tag:theconversation.com,2011:/fr/topics/diagnosis-10817/articlesDiagnosis – The Conversation2024-02-29T03:38:04Ztag:theconversation.com,2011:article/2246162024-02-29T03:38:04Z2024-02-29T03:38:04ZWhy Barnaby Joyce’s TV diagnosis of insomnia plus sleep apnoea is such a big deal<p>The <a href="https://theconversation.com/view-from-the-hill-how-does-david-littleproud-handle-the-latest-barnaby-joyce-embarrassment-223289">health</a> of Nationals MP Barnaby Joyce is in the news again, this time with a diagnosis of a sleep disorder made <a href="https://www.afr.com/companies/media-and-marketing/barnaby-joyce-to-be-diagnosed-with-a-sleep-disorder-on-live-tv-20240223-p5f79q">while filming</a> a TV documentary.</p>
<p>Joyce’s diagnosis of insomnia plus sleep apnoea arose while filming <a href="https://www.sbs.com.au/whats-on/article/australias-sleep-revolution-with-dr-michael-mosley/nuyko305b">Australia’s Sleep Revolution with Dr Michael Mosley</a> in 2023. SBS has confirmed episode three, in which my Flinders University colleagues reveal his sleep disorder, is set to air on March 20.</p>
<p>I was not involved in the program and have no knowledge of Joyce’s <a href="https://www.theaustralian.com.au/weekend-australian-magazine/australias-sleep-crisis-has-flinders-university-cracked-the-code-to-a-better-nights-sleep/news-story/d3b82617af33fff82487da2534722733">ongoing health care</a>. But I was part of the research team that in 2017 <a href="https://doi.org/10.1016/j.smrv.2016.04.004">coined the term COMISA</a> (co-morbid insomnia and sleep apnoea), the official name of Joyce’s on-screen diagnosis. Since then, I’ve led research into this <a href="https://doi.org/10.1016/j.smrv.2019.01.004">common</a> sleep disorder.</p>
<p>Here’s why it’s so important to diagnose and treat it.</p>
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Read more:
<a href="https://theconversation.com/view-from-the-hill-how-does-david-littleproud-handle-the-latest-barnaby-joyce-embarrassment-223289">View from The Hill: How does David Littleproud handle the latest Barnaby Joyce embarrassment?</a>
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<h2>What was Joyce’s diagnosis?</h2>
<p>People can be diagnosed separately with <a href="https://www.sleephealthfoundation.org.au/sleep-disorders/insomnia-2">insomnia</a> or <a href="https://www.sleephealthfoundation.org.au/sleep-disorders/obstructive-sleep-apnoea">sleep apnoea</a>.</p>
<p>Insomnia includes frequent difficulties falling asleep at the start of the night or difficulties staying asleep during the night. These can result in daytime fatigue, reduced energy, concentration difficulties and poor mood. Over time, insomnia can start to impact your <a href="https://theconversation.com/insomnia-and-mental-disorders-are-linked-but-exactly-how-is-still-a-mystery-212106">mental health</a> and quality of life.</p>
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<p>Sleep apnoea (specifically, obstructive sleep apnoea) is when people experience repeated interruptions or pauses in breathing while they sleep. This reduces oxygen levels during sleep, and you can wake up multiple times at night. People with sleep apnoea may be aware of loud snoring, gasping for air when they wake up, or feeling exhausted the next morning. However, not all people have these symptoms, and sleep apnoea can go undiagnosed for years.</p>
<p>But in Joyce’s case, both insomnia and sleep apnoea occur at the same time.</p>
<p>We’ve known this could happen since <a href="https://doi.org/10.1126/science.181.4102.856">the 1970s</a>, with <a href="https://psycnet.apa.org/doi/10.1037/0022-006X.67.3.405">evidence growing</a> over <a href="https://doi.org/10.1378/chest.120.6.1923">subsequent decades</a>. Since then, sleep researchers and clinicians around the world have learned more about how <a href="https://doi.org/10.1016/j.smrv.2019.01.004">common</a> this is, its <a href="https://doi.org/10.1183/13993003.01958-2021">consequences</a> and how best to <a href="https://doi.org/10.1111/jsr.13847">treat it</a>.</p>
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Read more:
<a href="https://theconversation.com/a-short-history-of-insomnia-and-how-we-became-obsessed-with-sleep-211729">A short history of insomnia and how we became obsessed with sleep</a>
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<h2>How do you know if you have it?</h2>
<p>Many people <a href="https://doi.org/10.1016/j.sleep.2005.08.008">seek help</a> for their sleep problems because of fatigue, exhaustion, physical symptoms, or poor mood during the day.</p>
<p>If you think you have insomnia, a GP or sleep specialist can talk to you about your sleep pattern, and might ask you to complete <a href="https://www.sleepprimarycareresources.org.au/insomnia/assessment-questionnaires">brief questionnaires</a> about your sleep and daytime symptoms. You might also be asked to fill in a “sleep diary” for one to two weeks. These will allow a trained clinician to see if you have insomnia.</p>
<p>If you or your GP think you may have (or are at risk of having) sleep apnoea, you may be referred for a sleep study. This normally involves sleeping overnight in a sleep clinic where your sleep patterns and breathing are monitored. Alternatively, you might be set up with a recording device to monitor your sleep at home. A trained medical professional, such as a sleep and respiratory physician, will often make the diagnosis.</p>
<p><a href="https://doi.org/10.1016/j.smrv.2021.101519">Up to 50%</a> of people with sleep apnoea report symptoms of insomnia. About <a href="https://doi.org/10.1016/j.smrv.2021.101519">30–40%</a> of people with insomnia also have sleep apnoea. </p>
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Read more:
<a href="https://theconversation.com/health-check-heres-what-you-need-to-know-about-sleep-apnoea-26402">Health Check: here's what you need to know about sleep apnoea</a>
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<h2>What are the consequences?</h2>
<p>Insomnia and sleep apnoea (individually) are associated with reduced <a href="https://theconversation.com/a-short-history-of-insomnia-and-how-we-became-obsessed-with-sleep-211729">sleep quality</a>, <a href="https://theconversation.com/insomnia-and-mental-disorders-are-linked-but-exactly-how-is-still-a-mystery-212106">mental health</a> and <a href="https://theconversation.com/health-check-heres-what-you-need-to-know-about-sleep-apnoea-26402">physical health</a>. </p>
<p>Importantly, people with both at the same also tend to <a href="https://doi.org/10.3390/brainsci9120371">experience</a> worse sleep, daytime function, mental health, physical health and quality of life, compared with people with no sleep disorder.</p>
<p>For instance, we know having both conditions comes with an <a href="https://doi.org/10.1111/jsr.13563">increased risk</a> of diseases of the heart.</p>
<p><a href="https://doi.org/10.2147/NSS.S379252">In</a> <a href="https://doi.org/10.1183/13993003.01958-2021">three</a> <a href="https://doi.org/10.1016/j.sleepe.2022.100043">studies</a>, we found people with both insomnia and sleep apnoea have about a 50–70% higher risk of dying early from any cause, compared with people with neither sleep condition. People with insomnia alone and sleep apnoea alone did not have an increased risk of dying early.</p>
<p>However, there are effective treatments to reduce these health consequences.</p>
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Read more:
<a href="https://theconversation.com/sleep-apnoea-can-be-scary-but-heres-what-happened-when-first-nations-people-had-a-say-in-their-own-care-214641">Sleep apnoea can be scary. But here's what happened when First Nations people had a say in their own care</a>
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<h2>How is it treated?</h2>
<p>In general, it is best for people to access evidence-based treatments for both disorders. These treatments vary according to the patient and the severity of their condition.</p>
<p>For instance, wearing a <a href="https://www.sleephealthfoundation.org.au/sleep-disorders/cpap-continuous-positive-airway-pressure">CPAP mask</a> while sleeping improves breathing during sleep and reduces many of the daytime consequences of obstructive sleep apnoea. However, other effective treatments may be recommended based on each person’s symptoms, such as weight management, avoiding sleeping on your back, <a href="https://www.sleephealthfoundation.org.au/sleep-disorders/oral-appliances-to-treat-snoring-and-obstructive-sleep-apnoea-osa">oral devices</a> (which look a bit like a mouthguard), or surgery.</p>
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<p>The <a href="https://theconversation.com/how-can-i-get-some-sleep-which-treatments-actually-work-212964">most effective</a> treatment for insomnia is cognitive behavioural therapy for insomnia, also known as <a href="https://www.sleepprimarycareresources.org.au/insomnia/cbti">CBTi</a>. About four to eight sessions often lead to improvements in sleep, daytime function and mental health that are maintained for many <a href="https://doi.org/10.1080/16506073.2021.2009019">years</a>. This can be delivered by trained therapists such as psychologists, nurses or GPs, as well as via <a href="https://www.sleepprimarycareresources.org.au/insomnia/cbti/referral-to-digital-cbti-programs">online</a> programs.</p>
<p>Last year, we drew together evidence from more than 1,000 people with both conditions. We found CBTi is an <a href="https://doi.org/10.1111/jsr.13847">effective treatment</a> for insomnia in people with treated and untreated sleep apnoea. </p>
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Read more:
<a href="https://theconversation.com/my-snoring-is-waking-up-my-partner-apart-from-a-cpap-machine-what-are-the-options-188825">My snoring is waking up my partner. Apart from a CPAP machine, what are the options?</a>
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<h2>New treatments and approaches</h2>
<p><a href="https://www.frontiersin.org/articles/10.3389/frsle.2024.1355468/abstract">We</a> and <a href="https://doi.org/10.1186/s13063-022-06753-4">other teams</a> internationally are developing and testing new ways of delivering CBTi.</p>
<p>Several groups are testing devices, which <a href="https://doi.org/10.1002%2Flio2.761">stimulate</a> the tongue muscles during sleep, to treat sleep apnoea in people with both disorders.</p>
<p>And we’re still working out the best order for patients to access treatments, and the best combination of treatments.</p>
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Read more:
<a href="https://theconversation.com/how-can-i-get-some-sleep-which-treatments-actually-work-212964">How can I get some sleep? Which treatments actually work?</a>
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<h2>The power of TV</h2>
<p>Joyce’s public diagnosis of both insomnia and sleep apnoea will no doubt raise awareness of what we suspect is an underdiagnosed condition. </p>
<p>Based on how common insomnia and sleep apnoea are in Australia, we estimate Joyce is one of about <a href="https://doi.org/10.1016/j.sleep.2021.03.023">5–10%</a> of Australian adults to have both at the same time.</p>
<p>The Conversation contacted Joyce’s spokesperson for comment but did not hear back before deadline.</p><img src="https://counter.theconversation.com/content/224616/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alexander Sweetman is a Senior Program Manager at the Australasian Sleep Association, the peak sleep health scientific and advocacy body in Australia and New Zealand, and has academic status at Flinders University. Alexander Sweetman reports previous research funding and/or consultancy work for; the National Health and Medical Research Council, The Hospital Research Foundation, Flinders University, Flinders Foundation, ResMed, Phillips, Cerebra, Re-Time, Sleep Review Mag, and Australian Doctor.</span></em></p>Having both conditions at the same time increases your risk of dying prematurely. But it can be treated. Here’s what’s involved.Alexander Sweetman, Research Fellow, College of Medicine and Public Health, Flinders UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2220592024-02-25T14:18:51Z2024-02-25T14:18:51ZHealth-care AI: The potential and pitfalls of diagnosis by app<figure><img src="https://images.theconversation.com/files/577606/original/file-20240223-24-vcg7d2.jpg?ixlib=rb-1.1.0&rect=1951%2C0%2C3458%2C2313&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">As apps are direct-to-consumer health technologies, they represent a new folk medicine. Users adopt these technologies based on trust rather than understanding how they operate.
</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>If <a href="https://www.who.int/about/accountability/governance/constitution">health is a fundamental human right</a>, health-care delivery must be <a href="https://nap.edu/25152">improved globally to achieve universal access</a>. However, the limited number of practitioners creates a barrier for all health-care systems.</p>
<p>Approaches to health-care delivery driven by artificial intelligence (AI) are poised to fill this gap. Whether in urban hospitals or in <a href="https://www.cbc.ca/news/canada/prince-edward-island/pei-artificial-intelligence-1.6994961">rural and remote homes</a>, AI has the reach that health-care professionals cannot hope to achieve. People seeking health information can obtain it quickly and conveniently. For health care to be effective, <a href="https://doi.org/10.2196/18599">patient safety</a> must remain a priority. </p>
<p>The news is filled with examples of novel applications of AI. Riding the wave of recent interest in conversational agents, Google researchers have developed an experimental <a href="https://blog.research.google/2024/01/amie-research-ai-system-for-diagnostic_12.html">diagnostic AI, Articulate Medical Intelligence Explorer (AMIE)</a>. People seeking health information provide their symptoms through a text-chat interface and AMIE begins to ask questions and provide recommendations as a human clinician might. The researchers claim that, when compared against clinicians, <a href="https://arxiv.org/abs/2312.00164">AMIE outperformed clinicians in both diagnostic accuracy and performance</a>.</p>
<figure class="align-center ">
<img alt="Text bubbles in chat." src="https://images.theconversation.com/files/574774/original/file-20240211-30-7rkqni.gif?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/574774/original/file-20240211-30-7rkqni.gif?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=533&fit=crop&dpr=1 600w, https://images.theconversation.com/files/574774/original/file-20240211-30-7rkqni.gif?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=533&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/574774/original/file-20240211-30-7rkqni.gif?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=533&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/574774/original/file-20240211-30-7rkqni.gif?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=670&fit=crop&dpr=1 754w, https://images.theconversation.com/files/574774/original/file-20240211-30-7rkqni.gif?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=670&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/574774/original/file-20240211-30-7rkqni.gif?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=670&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">AMIE dialogue.</span>
<span class="attribution"><a class="source" href="https://blog.research.google/2024/01/amie-research-ai-system-for-diagnostic_12.html">(Google)</a></span>
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<p>The potential of large language models (LLMs) like AMIE are clear. By being trained on a large database of text, LLM can generate text, identify the underlying meaning, and respond in a human-like manner. Provided patients have access to the internet, health advice could be tailored to the patient, provided quickly and easily, and allowing for triage of cases that are best handled by human health-care professionals.</p>
<p>But these tools are still in the experimental stages and have limitations. <a href="https://blog.research.google/2024/01/amie-research-ai-system-for-diagnostic_12.html">AMIE researchers</a> say further study is needed to “envision a future in which conversational, empathic and diagnostic AI systems might become safe, helpful and accessible.”</p>
<p>Precautions must be taken. Health-care delivery is a complicated task. Left unregulated — professionally or internationally — it presents challenges to quality of care, privacy and security.</p>
<h2>Medical decision-making</h2>
<p>Medical decision-making is among the most complicated and consequential of any activities. It might seem unlikely that an AI could work as effectively as a human clinician, however, <a href="https://doi.org/10.1037/1040-3590.12.1.19">decades of research</a> suggest that <a href="https://doi.org/10.1177/0011000005285875">algorithmic approaches to decision-making can be equal, or superior to, clinical intuition</a>.</p>
<p>Pattern recognition represents the core of medical expertise. Like other forms of <a href="https://doi.org/10.1111/j.1365-2923.2007.02946.x">expertise</a>, medical experts require <a href="https://doi.org/10.5489%2Fcuaj.3267">extensive training</a> to learn the diagnostic patterns, provide treatment recommendations and deliver care. Through effective instruction, <a href="https://doi.org/10.1037/a0016272">learners</a> <a href="https://doi.org/10.1016/j.humpath.2006.08.024">narrow the focus of their attention to diagnostic features, while ignoring non-diagnostic features</a>. </p>
<p>Yet, effective health-care delivery requires <a href="https://doi.org/10.3109/0142159X.2010.501190">more than just the ability to recognize patterns</a>. Health-care professionals must be capable of communicating this information to their patients. Beyond the difficulties of translating technical knowledge to patients with varying levels of <a href="https://doi.org/10.1111/j.1525-1497.2005.40245.x">health literacy</a>, health information is often emotionally charged, leading to <a href="https://doi.org/10.1136/archdischild-2021-323451">communication traps</a> where doctors and patients withhold information. By developing <a href="https://doi.org/10.1016/j.cpr.2008.04.002">a strong relationship with their patients</a>, health-care professionals can bridge these gaps.</p>
<p>The conversational features of LLMs, like <a href="https://chat.openai.com/auth/login">ChatGPT</a>, have generated considerable public interest. While claims that ChatGPT has “<a href="https://doi.org/10.1038/d41586-023-02361-7">broken the Turing Test</a>” are overstated, their human-like responses make LLM more engaging than previous <a href="https://doi.org/10.1016/j.chb.2016.01.004">chatbots</a>. Future LLMs like AMIE might prove to fill gaps in health-care delivery, however, they must be adopted with caution.</p>
<h2>Promise of accurate, explainable AI in health-care</h2>
<figure class="align-center ">
<img alt="A smartphone with a stethoscope and an image of a white coat on the screen" src="https://images.theconversation.com/files/577607/original/file-20240223-20-fl3i6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/577607/original/file-20240223-20-fl3i6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=333&fit=crop&dpr=1 600w, https://images.theconversation.com/files/577607/original/file-20240223-20-fl3i6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=333&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/577607/original/file-20240223-20-fl3i6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=333&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/577607/original/file-20240223-20-fl3i6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=418&fit=crop&dpr=1 754w, https://images.theconversation.com/files/577607/original/file-20240223-20-fl3i6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=418&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/577607/original/file-20240223-20-fl3i6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=418&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Effective health-care delivery requires more than just the ability to recognize patterns. Health-care professionals must be capable of communicating this information to their patients.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>AMIE is not Google’s first health-care technology. In 2008, <a href="https://www.google.com/publicdata/explore?ds=z3bsqef7ki44ac_">Google Flu Trends (GFT)</a> was used to estimate the prevalence of influenza within a population by using aggregated search terms. They assumed that users’ search behaviour should be related to the prevalence of the flu, with the search trends of the past predicting future cases.</p>
<p>GFT’s early predictions were <a href="https://doi.org/10.1038/nature07634">quite promising</a>. <a href="https://doi.org/10.1126/science.1248506">Until they failed</a>, with old data being identified as the source of bias. <a href="https://doi.org/10.1371/journal.pcbi.1007258">Later efforts to retrain the model with updated search trends again proved successful</a>. </p>
<p><a href="https://www.ibm.com/watson">IBM’s Watson</a> provides another cautionary tale. IBM invested considerable capital in developing Watson and implemented over 50 health-care projects. Watson’s potential <a href="https://doi.org/10.1109/MSPEC.2019.8678513">failed to materialize</a>, with the underlying technologies quietly being sold off. Not only did the system fail to engender trust, that distrust was well deserved as it produced <a href="https://www.statnews.com/2018/07/25/ibm-watson-recommended-unsafe-incorrect-treatments/">“unsafe and incorrect” treatment recommendations</a>.</p>
<p>AIs developed to diagnose, triage and predict the progression of COVID-19 provide the best example of the readiness of AIs in health care to handle public health challenges. Broad reviews of these efforts cast doubt on the outcomes. <a href="https://doi.org/10.1136/bmj.m1328">The validity and accuracy of the models and their predictions were generally lacking</a>. This was largely attributed to <a href="https://cdei.blog.gov.uk/2021/03/08/reflecting-on-the-use-of-ai-and-data-driven-technology-in-the-pandemic/">the quality of data</a>.</p>
<p>One of the lessons that can be gleaned from the use of AI during COVID is that there is no shortage of researchers and algorithms, however, there is a dire need for <em>human</em> quality control. This has led to calls for <a href="https://doi.org/10.1109/TTS.2023.3257627">human-centred design</a>. </p>
<p>This is also true of expert reviews of the technologies themselves. Like <a href="https://arxiv.org/abs/2312.00164">Google’s AMIE</a>, many publications that assess these technologies are released as pre-prints before or during the peer review process. There can also be extensive <a href="https://doi.org/10.1002/asi.23044">lags between a pre-print and its eventual publication</a>. Rather than quality, research has demonstrated that <a href="https://doi.org/10.1371%2Fjournal.pone.0047523">the number of mentions on social media is a greater predictor of a publication’s download rate</a>.</p>
<p>Without ensuring <a href="https://www.routledge.com/Ethical-Artificial-Intelligence-from-Popular-to-Cognitive-Science-Trust/Schoenherr/p/book/9780367697983">the validity of the methods for training and implementation</a>, health technologies might be adopted without any formal means of quality control. </p>
<h2>Technology as folk medicine</h2>
<p>The problem of AI in health-care is made clear when we acknowledge that many health ecosystems can exist in parallel. <a href="https://doi.org/10.1002/9781444395303.ch20">Medical pluralism</a> is observed when two or more <em>systems</em> are available to health consumers. This typically takes the form of <a href="https://www.who.int/health-topics/traditional-complementary-and-integrative-medicine#tab=tab_1">traditional medicine</a> and a western biomedical approach.</p>
<p>As apps are direct-to-consumer health technologies, they represent a <a href="https://doi.org/10.1109/MTS.2022.3197273">new folk medicine</a>. Users adopt these technologies based on <a href="https://doi.org/10.1145/3428361.3428362">trust rather than understanding how they operate</a>. In the absence of medical knowledge and technical understanding of an AIs operations, <a href="https://doi.org/10.2196/11254">users are left to look for cues about a technology’s effectiveness</a>. <a href="https://doi.org/10.1109/MTS.2022.3197273">App store ratings and endorsements</a> can replace the expert review of health-care professionals. </p>
<p>Users might prefer to use AI-enabled technologies rather than humans in cases where their health concerns are associated with <a href="https://doi.org/10.1016/j.jad.2024.01.168">stigma</a> or <a href="https://doi.org/10.1007/978-3-030-91684-8_7">chronic emotional distress</a>. However, the accuracy of these systems might lag due to failures to update data. </p>
<p>The provision of user data also creates challenges. Much like <a href="https://doi.org/10.1186/s12910-016-0101-9">23andMe</a>, if users disclose personal information, it might leave clues to others in their social networks. </p>
<p>If left unregulated, these technologies pose challenges for the quality of care. Professional and national regulations are required to ensure these technologies truly benefit the public.</p><img src="https://counter.theconversation.com/content/222059/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jordan Richard Schoenherr has received funding from the Ottawa Hospital Research Institute for his research in medical education and decision-making.</span></em></p>Future AI large language models like Google’s AMIE might prove to fill gaps in health-care delivery, however, they must be adopted with caution.Jordan Richard Schoenherr, Assistant Professor, Psychology, Concordia UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2191782023-12-13T12:59:22Z2023-12-13T12:59:22ZMicroscopic colitis explained – and why it’s often mistaken for IBS<figure><img src="https://images.theconversation.com/files/565160/original/file-20231212-19-z2meix.jpg?ixlib=rb-1.1.0&rect=0%2C11%2C7348%2C4616&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/girl-having-stomachache-young-woman-suffering-2118544205">Body Stock/Shutterstock</a></span></figcaption></figure><p>In 1976, a Swedish pathologist, C.G Lindström, published a <a href="https://pubmed.ncbi.nlm.nih.gov/934705/">paper</a> describing a colonic anomaly. Through his microscope, he noted that part of the large intestinal wall of one of his patients was thickened. The patient, whose large intestine had been so thoroughly examined, suffered from chronic diarrhoea. The pathologist suggested naming the new entity collagenous colitis, with “colitis” referring to inflammation of the large intestine.</p>
<p>Ten years later, an American pathologist, A.J. Lazenby, <a href="https://doi.org/10.1016/0046-8177(89)90198-6">noted</a> an increased concentration of white blood cells in the colonic wall in patients experiencing similar chronic diarrhoea. She named the condition lymphocytic colitis. </p>
<p>Since patients diagnosed with these two new diseases experienced identical symptoms, had tissue changes only visible through a microscope and responded to the same medication, they were seen as suffering from one entity: microscopic colitis. </p>
<p>Although the medical community gradually became aware of microscopic colitis, the condition was rarely diagnosed. Several factors likely contributed to this, such as the absence of blood in the stools, which is rightly considered a serious symptom requiring a thorough and prompt investigation. </p>
<p>Also, <a href="https://doi.org/10.1111/apt.13573">studies</a> have found that microscopic colitis is often misdiagnosed as irritable bowel syndrome, a functional disorder (arising from changes in how the body works, rather than a disease). </p>
<p>Another explanation is, of course, the healthcare resources required to diagnose the condition. </p>
<h2>More people being diagnosed</h2>
<p>First, an examination of the large intestine must be undertaken during which tissue samples have to be collected and then these tissue samples must be properly examined by a pathologist who knows what changes to look for. </p>
<p>However, as the awareness of the disease has increased along with the access to the healthcare resources described above, more people are being diagnosed with microscopic colitis. </p>
<p>In a study examining the diagnosis of microscopic colitis in Sweden from 1990 to 2015, my colleagues and I noted a sharp rise in the <a href="https://doi.org/10.1111/apt.15246">curve</a> depicting the number of people diagnosed per year for the first 20 years, followed by a plateau. </p>
<p>What we also noted was that 70% of people with the condition were women and that the average age at diagnosis was around 60 years – although 25% were younger than 45. </p>
<p>In another of our <a href="https://doi.org/10.1080/00365521.2018.1543446">studies</a>, we investigated what symptoms these patients experienced. Almost everyone suffered from watery diarrhoea (without blood). Other symptoms included abdominal pain, weight loss, nausea and some patients even experienced faecal incontinence. </p>
<p>Among gastroenterologists, it is well known that patients with this disease often experience stress and anxiety related to their bowel movements. Some may even avoid going outdoors for fear of not making it to a restroom in time. And when going out they always know where the nearest toilet is. </p>
<figure class="align-center ">
<img alt="Woman staring out a window" src="https://images.theconversation.com/files/565161/original/file-20231212-23-bdnmji.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/565161/original/file-20231212-23-bdnmji.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/565161/original/file-20231212-23-bdnmji.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/565161/original/file-20231212-23-bdnmji.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/565161/original/file-20231212-23-bdnmji.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/565161/original/file-20231212-23-bdnmji.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/565161/original/file-20231212-23-bdnmji.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Some people with microscopic colitis will even avoid going out.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-worried-woman-looking-through-window-1681794337">Marjan Apostolovic/Shutterstock</a></span>
</figcaption>
</figure>
<p>Unfortunately, we do not yet know what causes the disease, but it is considered to be a complex combination of genetic and environmental factors as well as an imbalanced immune system. </p>
<p>Smoking also seems to be a risk factor. People with microscopic colitis who smoke, are diagnosed at a younger age and have more symptoms. On the bright side, there are effective treatments, such as the steroid drug budesonide, usually without any serious side-effects. And people who do smoke and quit may even experience an alleviation of their symptoms. </p>
<p>Properly diagnosing and treating microscopic colitis can make a huge difference for people with the condition.</p><img src="https://counter.theconversation.com/content/219178/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Bergman has previously received funding from Mag-Tarmfonden.</span></em></p>Some people with microscopic colitis avoid going outdoors.David Bergman, Karolinska InstitutetLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2178812023-12-04T19:17:08Z2023-12-04T19:17:08ZEndometriosis: It’s time to change the pattern of pain, stigma and barriers to diagnosis and treatment<figure><img src="https://images.theconversation.com/files/563001/original/file-20231201-29-ehllq0.jpg?ixlib=rb-1.1.0&rect=135%2C45%2C6527%2C4366&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Government of Canada recently announced more than $1.6 million for endometriosis patients and research, the largest single investment in endometriosis care in Canada for the last 20 years.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/endometriosis-its-time-to-change-the-pattern-of-pain-stigma-and-barriers-to-diagnosis-and-treatment" width="100%" height="400"></iframe>
<p><a href="https://www.who.int/news-room/fact-sheets/detail/endometriosis">Endometriosis</a> is a debilitating disease that <a href="https://doi.org/10.1016/j.jogc.2020.05.009">affects an estimated one million Canadians</a>. It involves the overgrowth of tissue similar to endometrium tissue (the tissue that lines the uterus). </p>
<p>For people with endometriosis, this tissue grows excessively, both inside and outside of the uterus, which can cause pelvic pain, extreme menstrual cramping and non-menstrual cramping, as well as chronic fatigue and reduced fertility. </p>
<p>The Government of Canada <a href="https://www.canada.ca/en/health-canada/news/2023/09/government-of-canada-strengthens-access-to-sexual-and-reproductive-services-for-people-living-with-endometriosis.html">recently announced more than $1.6 million</a> for endometriosis patients and research, the largest single investment in endometriosis care in Canada for the last 20 years. This much-needed, long-awaited funding will go far to address the many challenges that endometriosis patients face, including struggling to get a diagnosis in the first place, dismissal of their symptoms, related stigma, and ineffective treatments.</p>
<p>Left untreated, endometriosis can affect the central nervous system, leaving patients at heightened risk of abnormal pain and chronic pain presentation, which too often negatively impacts their overall quality of life.</p>
<p>In fact, endometriosis patients often experience a reduced ability to participate in the activities of everyday life. Yolanda Kirkham, an obstetrician-gynecologist (OBGYN) from the University of Toronto, <a href="https://obgyn.utoronto.ca/news/invisible-disease-endometriosis">has reported that</a> girls and young women are unable to attend school for a few days each month due to their symptoms, while others with the disease frequently miss work due to nausea and vomiting. </p>
<figure class="align-center ">
<img alt="A doctor and a young woman patient in a clinic" src="https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Most cases of endometriosis are not diagnosed by primary care providers, but by specialists — namely OBGYNs to whom they are referred. Long waiting lists to see specialists can contribute to delayed diagnosis.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>The unfortunate outcome for these patients is not just their reduced ability to participate in activities. It also means they experience significant losses in their economic productivity. Researchers have found that the average endometriosis patient in Canada <a href="https://doi.org/10.1016/s1701-2163(16)34986-6">loses around $3,400 in economic productivity per year.</a> </p>
<h2>Delayed diagnosis</h2>
<p>One of the significant challenges faced by people with endometriosis is receiving a diagnosis. Patients experience an average delay of <a href="https://doi.org/10.1016/j.jogc.2019.10.038">5.4 years</a> from the onset of symptoms to diagnosis. The symptoms are similar to other reproductive health issues (such as <a href="https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/">polycystic ovary syndrome</a>) or severe period pain, which can be confusing for non-specialist health-care professionals. </p>
<p>Research with endometriosis patients has shown that most cases of endometriosis are not diagnosed by primary care providers, <a href="https://doi.org/10.1016/j.srhc.2015.11.003">but by specialists</a> — namely OBGYNs to whom they are referred. Taken together with long waiting lists for specialists, the barriers to diagnosis are significant. </p>
<p>Another barrier is that women often have difficulty convincing care providers their pain is real and a cause of concern. In a recent research project, one of us (Sarah Seabrook) examined 70 publicly available accounts of people experiencing endometriosis, including quotes printed in newspapers, as well as from the narratives published by endometriosis not-for-profit <a href="https://endoact.ca/">EndoAct</a>. </p>
<p>Patients described being dismissed, that their pain was “<a href="https://endoact.ca/maureen-2/">just muscle pain</a>,” “<a href="https://endoact.ca/kat/">all women go through this</a>,” and “<a href="https://www.cbc.ca/news/canada/saskatoon/endometriosis-chelsea-fataki-1.4605830">this is the way cycles are for women</a>,” and to live with it.</p>
<p>This dismissal of pain is particularly troublesome because people don’t often share their menstrual experiences and may be unable to differentiate between normal and abnormal menstrual experiences. In an article published by CBC News in 2021, a woman with endometriosis reported that the first few times she had her period, she was hospitalized for severe pain, but because this was her initial experience of menstruation, “<a href="https://www.cbc.ca/news/canada/british-columbia/endometriosis-lacking-research-1.5910342">she thought the pain related to her period was normal</a>.”</p>
<h2>Lack of effective treatments</h2>
<p>Once endometriosis is diagnosed, there are significant barriers to receiving effective treatment. <a href="https://doi.org/10.1016/j.fertnstert.2017.01.003">The first line of treatment is typically hormonal birth control</a>, which does nothing to address the growth of endometrium-like tissue, although for some people it can help with controlling menstrual pain. The same is true of anti-inflammatories and painkillers, which can reduce pain, but do little for the growth of endometrium-like tissue. </p>
<p>When things are more severe, patients might be given surgical options such as tissue excision (removing the entire endometriosis lesion) or ablation (burning off the surface of the endometriosis lesion). However, these procedures are rarely curative — the excess endometrium-like tissue grows back in a lot of cases. As a final resort, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/">some patients undergo a hysterectomy</a>. For the most part, endometriosis care is focused on either temporarily reducing pain, or temporarily controlling the growth of tissue. </p>
<p>The lack of effective treatment options is tied to an ongoing failure to understand endometriosis, its underlying causes and effects. Leading <a href="https://doi.org/10.1503/cmaj.220637">Canadian experts</a> have been calling for the improved understanding of endometriosis care and its treatment options, and <a href="https://endoact.ca/wp-content/uploads/2023/04/DiscussionENF2023.pdf">advocates</a> have been mobilizing for increased funding to understand, diagnose and treat endometriosis in Canada. </p>
<p>To improve outcomes, endometriosis patients need more research, more options and more attention to be paid to the disease. The newly announced federal investment in endometriosis research and care by the federal government is a good first step — although continued funding and support will be needed to address the continued, far-reaching effects of endometriosis in Canada.</p>
<p><em>This is a corrected version of a story originally published on Dec. 4, 2023. The earlier story used the term “endometrial tissue” instead of “endometrium-like tissue” or “tissue similar to endometrium tissue.”</em></p><img src="https://counter.theconversation.com/content/217881/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alana Cattapan receives funding from the Social Sciences and Humanities Research Council of Canada and the Canadian Institutes of Health Research. </span></em></p><p class="fine-print"><em><span>Sarah Seabrook does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Endometriosis often means years of severe pain, lost productivity and dismissed symptoms before getting a diagnosis — followed by ineffective treatment. New funding aims to change this pattern.Sarah Seabrook, Research Assistant in the Department of Political Science, University of WaterlooAlana Cattapan, Assistant Professor and Canada Research Chair in the Politics of Reproduction, University of WaterlooLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2173742023-11-30T01:09:07Z2023-11-30T01:09:07ZArtificial intelligence is already in our hospitals. 5 questions people want answered<figure><img src="https://images.theconversation.com/files/560122/original/file-20231117-23-mms70g.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1000%2C666&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/female-face-matrix-digital-numbers-artifical-2268966863">Shutterstock</a></span></figcaption></figure><p>Artificial intelligence (AI) is already being used in health care. AI can look for patterns in <a href="https://journal.achsm.org.au/index.php/achsm/article/view/861">medical images</a> to help diagnose disease. It can help predict who in a hospital ward might <a href="https://www.jmir.org/2021/9/e28209">deteriorate</a>. It can <a href="https://elicit.com/">rapidly summarise</a> medical research papers to help doctors stay up-to-date with the latest evidence.</p>
<p>These are examples of AI making <a href="https://theconversation.com/artificial-intelligence-wont-replace-a-doctor-any-time-soon-but-it-can-help-with-diagnosis-83353">or shaping</a> decisions health professionals previously made. More applications are being developed.</p>
<p>But what do consumers think of using AI in health care? And how should their answers shape how it’s used in the future?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ai-is-already-being-used-in-healthcare-but-not-all-of-it-is-medical-grade-207912">AI is already being used in healthcare. But not all of it is 'medical grade'</a>
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<h2>What do consumers think?</h2>
<p>AI systems are trained to look for patterns in large amounts of data. Based on these patterns, AI systems can make recommendations, suggest diagnoses, or initiate actions. They can potentially continually learn, becoming better at tasks over time.</p>
<p>If we draw together <a href="https://www.sciencedirect.com/science/article/pii/S0277953623007141#appsec1">international</a> evidence, including <a href="https://www.uow.edu.au/the-arts-social-sciences-humanities/research/acheev/artificial-intelligence-in-health/">our own</a> <a href="https://journal.achsm.org.au/index.php/achsm/article/view/861">and that</a> <a href="https://humanfactors.jmir.org/2022/3/e34514/authors">of others</a>, it seems most consumers accept the potential value of AI in health care. </p>
<p>This value could include, for example, increasing the <a href="https://www.jmir.org/2022/8/e37611/">accuracy of diagnoses</a> or improving <a href="https://mental.jmir.org/2019/11/e12942/">access to care</a>. At present, these are largely potential, rather than proven, benefits. </p>
<p>But consumers say their acceptance is conditional. They still have serious concerns.</p>
<p><strong>1. Does the AI work?</strong></p>
<p>A baseline expectation is AI tools should work well. Often, consumers say AI should be at least as good as a <a href="https://journal.achsm.org.au/index.php/achsm/article/view/861">human doctor</a> at the tasks it performs. They say we should not use AI if it will lead to more incorrect diagnoses or medical errors.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ai-chatbots-are-still-far-from-replacing-human-therapists-201084">AI chatbots are still far from replacing human therapists</a>
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<p><strong>2. Who’s responsible if AI gets it wrong?</strong></p>
<p>Consumers also worry that if AI systems generate decisions – such as diagnoses or treatment plans – without human input, it may be unclear who is responsible for errors. So people often want clinicians to remain responsible for the final decisions, and for <a href="https://www.nature.com/articles/s41746-021-00509-1">protecting patients</a> from harms.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/who-will-write-the-rules-for-ai-how-nations-are-racing-to-regulate-artificial-intelligence-216900">Who will write the rules for AI? How nations are racing to regulate artificial intelligence</a>
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<p><strong>3. Will AI make health care less fair?</strong></p>
<p>If health services are <a href="https://theconversation.com/ms-dhu-coronial-findings-show-importance-of-teaching-doctors-and-nurses-about-unconscious-bias-60319">already discriminatory</a>, AI systems can learn these patterns from data and <a href="https://www.science.org/doi/10.1126/science.aax2342">repeat or worsen</a> the discrimination. So AI used in health care can make health inequities worse. In our studies consumers said this <a href="https://journals.sagepub.com/doi/pdf/10.1177/20552076231191057">is not OK</a>.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1655077669610962944"}"></div></p>
<p><strong>4. Will AI dehumanise health care?</strong></p>
<p>Consumers are concerned AI will take the “human” elements out of health care, consistently saying AI tools should <a href="https://journals.sagepub.com/doi/full/10.1177/20552076221116772">support rather than replace</a> doctors. Often, this is because AI is perceived to lack important human traits, <a href="https://journals.sagepub.com/doi/full/10.1177/2055207619871808">such as empathy</a>. Consumers say the communication skills, care and touch of a health professional are especially important when feeling vulnerable.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/chatbots-for-medical-advice-three-ways-to-avoid-misleading-information-213266">Chatbots for medical advice: three ways to avoid misleading information</a>
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<p><strong>5. Will AI de-skill our health workers?</strong></p>
<p>Consumers value human clinicians and their expertise. In our <a href="https://journals.sagepub.com/doi/full/10.1177/20552076231191057">research with women</a> about AI in breast screening, women were concerned about the potential effect on radiologists’ skills and expertise. Women saw this expertise as a precious shared resource: too much dependence on AI tools, and this resource might be lost.</p>
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<h2>Consumers and communities need a say</h2>
<p>The Australian health-care system cannot focus only on the technical elements of AI tools. Social and ethical considerations, including high-quality engagement with consumers and communities, are essential to shape AI use in health care.</p>
<p>Communities need opportunities to develop <a href="https://theconversation.com/chatbots-for-medical-advice-three-ways-to-avoid-misleading-information-213266">digital health literacy</a>: <a href="https://www.goodthingsfoundation.org.au/the-digital-divide/digital-health/">digital skills</a> to access reliable, trustworthy health information, services and resources. </p>
<p>Respectful engagement with Aboriginal and Torres Strait Islander communities must be central. This includes upholding Indigenous data sovereignty, which the Australian Institute of Aboriginal and Torres Strait Islander Studies <a href="https://aiatsis.gov.au/publication/116530">describes as</a>:</p>
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<p>the right of Indigenous peoples to govern the collection, ownership and application of data about Indigenous communities, peoples, lands, and resources.</p>
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<p>This includes any use of data to create AI. </p>
<p>This critically important consumer and community engagement needs to take place before managers design (more) AI into health systems, before <a href="https://theconversation.com/who-will-write-the-rules-for-ai-how-nations-are-racing-to-regulate-artificial-intelligence-216900">regulators</a> create guidance for how AI should and shouldn’t be used, and before clinicians consider buying a new AI tool for their practice.</p>
<p>We’re making some progress. Earlier this year, we ran a <a href="https://www.uow.edu.au/the-arts-social-sciences-humanities/research/acheev/artificial-intelligence-in-health/">citizens’ jury on AI in health care</a>. We supported 30 diverse Australians, from every state and territory, to spend three weeks learning about AI in health care, and developing recommendations for policymakers.</p>
<p>Their recommendations, which will be published in an upcoming issue of the Medical Journal of Australia, have informed a recently released <a href="https://aihealthalliance.org/">national roadmap</a> for using AI in health care.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/worried-about-ai-you-might-have-ai-nxiety-heres-how-to-cope-205874">Worried about AI? You might have AI-nxiety – here's how to cope</a>
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<h2>That’s not all</h2>
<p>Health professionals also need to be upskilled and supported to use AI in health care. They need to learn to be critical users of digital health tools, including understanding their pros and cons.</p>
<p>Our <a href="https://pubmed.ncbi.nlm.nih.gov/37071804/">analysis</a> of safety events reported to the Food and Drug Administration shows the most serious harms reported to the US regulator came not from a faulty device, but from the way consumers and clinicians used the device.</p>
<p>We also need to consider when health professionals should tell patients an AI tool is being used in their care, and when health workers should seek informed consent for that use.</p>
<p>Lastly, people involved in every stage of developing and using AI need to get accustomed to asking themselves: do consumers and communities agree this is a justified use of AI? </p>
<p>Only then will we have the AI-enabled health-care system consumers actually want.</p><img src="https://counter.theconversation.com/content/217374/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Stacy Carter receives funding from National Health and Medical Research Council, National Breast Cancer Foundation, Medical Research Futures Fund. </span></em></p><p class="fine-print"><em><span>Emma Frost receives funding from the Australian Government Research Training Program and the National Health and Medical Research Council.</span></em></p><p class="fine-print"><em><span>Farah Magrabi receives funding from the National Health and Medical Research Council, the Digital Health CRC and Macquarie University. She is Co-Chair of the Australian Alliance for AI in Healthcare's Safety, Quality and Ethics Working Group. </span></em></p><p class="fine-print"><em><span>Yves Saint James Aquino receives funding from the National Health and Medical Research Council (CRE 2006-545 - WiserHealthcare). He is affiliated with Bellberry Limited, a not-for-profit organisation providing scientific and ethical review of human research projects.</span></em></p>Before AI becomes widespread in health care, we need to ask what matters to consumers.Stacy Carter, Professor and Director, Australian Centre for Health Engagement, Evidence and Values, University of WollongongEmma Frost, PhD candidate, Australian Centre for Health Engagement, Evidence and Values, University of WollongongFarah Magrabi, Professor of Biomedical and Health Informatics at the Australian Institute of Health Innovation, Macquarie UniversityYves Saint James Aquino, Research Fellow, Australian Centre for Health Engagement, Evidence and Values, University of WollongongLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2148922023-10-17T15:09:58Z2023-10-17T15:09:58ZPeople with intellectual disability are often diagnosed with cancer when it is already well advanced<figure><img src="https://images.theconversation.com/files/554240/original/file-20231017-17-a0uhr1.jpg?ixlib=rb-1.1.0&rect=0%2C6%2C4089%2C2146&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-meeting-patient-office-giving-medical-1873762048">Stokkete/Shutterstock</a></span></figcaption></figure><p>Many people with intellectual disability are diagnosed with cancer <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8948391/">when it has already spread</a> (metastasized) and the odds of survival are lower.</p>
<p>Intellectual disability is a <a href="https://www.psychiatry.org/patients-families/intellectual-disability/what-is-intellectual-disability#:%7E:text=Intellectual%20disability%20is%20a%20life,to%20thrive%20throughout%20their%20lifetime.">lifelong condition</a> that occurs before adulthood where people have a reduced ability to understand new or complex information, learn new skills and cope independently. In the UK it is called “learning disability”.</p>
<p>Cancer has been reported as the cause of death <a href="https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.34030">about 1.5 times more often</a> among people with intellectual disability than people without it. In a recent study, my colleagues and I found that cancer is the <a href="https://bmjopen.bmj.com/content/13/5/e065745">second leading cause of death</a> in Ireland for people with intellectual disability who live in residential care homes.</p>
<p>Cancers tend to be found late in this cohort for a number of reasons. One of these is the <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/jir.12353">attitudes of healthcare staff</a>, who may be influenced by stigma, previous negative experiences and communication barriers.</p>
<p>Other problems include underestimating the severity of a person’s symptoms or assuming that the symptoms are to do with their intellectual disability rather than having a <a href="http://www.intellectualdisability.info/changing-values/diagnostic-overshadowing-see-beyond-the-diagnosis">biological cause</a>. For example, if a person sees a doctor because they are self-harming, the doctor might assume that it’s related to the patient’s intellectual disability rather than a sign of distress caused by other symptoms they can’t verbalise.</p>
<p>Many people in this population have a higher chance of developing cancer and having worse outcomes because they have more long-term health issues with high rates of <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/jir.12900">obesity</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9020532/#:%7E:text=Adults%20with%20an%20intellectual%20disability%20(ID)%20have%20poorer%20health%20than,inactivity%20contribute%20to%20poorer%20health.">physical inactivity</a>, and <a href="https://www.cambridge.org/core/services/aop-cambridge-core/content/view/FAA6A2056D942D333CDDEE5892B1DA6C/S2056472400002337a.pdf/prevalence_of_mental_health_conditions_and_relationship_with_general_health_in_a_wholecountry_population_of_people_with_intellectual_disabilities_compared_with_the_general_population.pdf">mental health issues</a>. They are more likely to be <a href="https://pubmed.ncbi.nlm.nih.gov/17563898/">poor</a>, <a href="https://www.emerald.com/insight/content/doi/10.1108/TLDR-03-2019-0014/full/html#:%7E:text=with%20family%20members.-,Discussion,is%20that%20outcomes%20remain%20poor.">unemployed</a> and <a href="https://www.sciencedirect.com/science/article/pii/S0891422218302373?casa_token=HBUMzi3t-DQAAAAA:j7fosrPJbsESH0HWbVCrH9GIfBXYrVJy3rRvqsZYBuimql5H2v217P5mD9_Bd-cxCNSlGTS8UA">lonely</a> and their housing situation also tends to be <a href="https://inclusionireland.ie/wp-content/uploads/2020/11/housing-position-report.pdf">precarious</a>. Some studies have found that they are less likely to take part in cancer <a href="https://journals.sagepub.com/doi/full/10.1177/0969141319870221">screening programmes</a>.</p>
<figure class="align-center ">
<img alt="Person playing a videogame in the dark" src="https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">People with intellectual disability can often be socially isolated and physically inactive.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-gamer-playing-video-game-wearing-624801452">sezer66/Shutterstock</a></span>
</figcaption>
</figure>
<p>People with intellectual disability often have <a href="https://www.sciencedirect.com/science/article/abs/pii/S0891422219302240?via%3Dihub">poor communication skills</a>. This can stop them from being able to get their point across about the symptoms they are experiencing. So it is up to healthcare professionals to identify signs of illness, which can be difficult.</p>
<p>When all these risks are combined, it is clear why people with this disability may experience delayed cancer diagnosis – or even no diagnosis at all.</p>
<h2>Making reasonable adjustments</h2>
<p>In England, <a href="https://bmjopen.bmj.com/content/12/3/e056974">recent research</a> found that over 40% of adults with intellectual disability who died from bowel cancer died before they reached the age for cancer screening.</p>
<p>To improve cancer care, health professionals need to make <a href="https://bmjopen.bmj.com/content/11/2/e039647">reasonable adjustments</a> for this group of people. These adjustments could include screening at an earlier age, giving them longer appointments, making information accessible so they can understand it, involving them in decision-making, and providing a <a href="https://healthservice.hse.ie/filelibrary/onmsd/hse-health-passport-for-people-with-intellectual-disability.pdf">hospital passport</a> that includes details about their abilities and needs and general health.</p>
<p>In England, healthcare professionals receive <a href="https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism">mandatory training</a> on people with intellectual disability. The training provides an overview and awareness of the support that they need and ensures that health and social care staff have the right skills and knowledge to provide care for them. </p>
<p>This training on a national level is unique and could be used in Ireland and other countries to help improve healthcare for people with this disability.</p>
<p>People in this cohort are <a href="https://www.irishexaminer.com/news/spotlight/arid-41217634.html">living longer</a> but <a href="https://pubmed.ncbi.nlm.nih.gov/34673770/">getting</a> cancer and <a href="https://pubmed.ncbi.nlm.nih.gov/34787906/">dying</a> from it at a higher rate than other people. To detect cancer early and increase their chances of survival there needs to be recognition by health and care staff that this population experience greater challenges and risks and is more vulnerable to receiving late-stage diagnosis. </p>
<p>Increased uptake of cancer screening, reasonable adjustments and training are urgently needed to make this situation better.</p><img src="https://counter.theconversation.com/content/214892/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Martin McMahon does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>People with intellectual disability are 50% more likely to die from cancer than the general population.Martin McMahon, Assistant Professor in Intellectual Disability Nursing, Trinity College DublinLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2096112023-09-18T14:54:03Z2023-09-18T14:54:03ZMedical gaslighting: when conditions turn out not to be ‘all in the mind’<p>Gaslight, a psychological thriller starring Ingrid Bergman, was a box-office hit when it was <a href="https://www.imdb.com/title/tt0036855/">released in 1944</a>, but its time in the limelight could have ended there. However, the ruse employed by its villain gave the work remarkable staying power.</p>
<p>Set in 1880s London, the story plays out in the upper-middle-class, gas-lit home of Gregory and Paula Anton. Gregory is intent on making Paula think she is going insane so that he can have her committed to a mental institution and claim her inheritance. He attempts to convince her that the gas lighting in their house, which the audience can see is flickering, is not really flickering. What her senses tell her is a lie – a sign of her steady descent into madness. </p>
<p>Today, the term “gaslighting” is widely used to describe psychological manipulation, where a person is made to doubt their perception of reality. Politicians are <a href="https://www.salon.com/2016/10/16/donald-trump-as-a-gaslighter-what-we-must-learn-from-his-manipulative-non-apology/">accused of it</a>, as are <a href="https://metro.co.uk/2023/08/07/lizzo-accused-of-gaslighting-and-victim-blaming-by-dancers-19292919/">celebrities</a>. The term also used in discussions about health. </p>
<p><a href="https://www.bmj.com/content/378/bmj.o1974">Medical gaslighting</a> refers to cases in which a healthcare practitioner imposes a pattern of questions, testing or diagnosis that runs counter or tangential to the history or symptoms the patient is describing or experiencing.</p>
<p>There is usually a clear power imbalance at play. More often than not, <a href="https://www.nytimes.com/2022/07/29/well/mind/medical-gaslighting.html?searchResultPosition=2">gaslit patients</a> are women, members of the LGBTQ community, people of colour and older adults. </p>
<p>It is a painful reminder that medicine does not occupy a rarefied space apart from society and history. Those who are socially, culturally, politically or economically marginalised don’t find that this experience suddenly changes when they walk through the clinic door. </p>
<p>In many ways, the term gaslighting is an apt fit for medical settings, especially when it comes to the common refrain: “It’s all in your head.” </p>
<p>One of the best-known examples relates to heart disease, where a woman’s symptoms are <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2825679/pdf/jwh.2008.1007.pdf">twice as likely</a> as a man’s to be simply written off as mental illness. This missed diagnosis is often explained by the fact that women’s heart attack symptoms are “strange and unpredictable” (compared with a man’s “normal” symptoms). However, <a href="https://www.theguardian.com/society/2022/sep/18/why-gender-is-at-the-heart-of-the-matter-for-cardiac-illness">that excuse doesn’t hold water</a> – there is a large overlap in heart attack symptoms between the sexes. </p>
<p>Elsewhere, social media and news reports are full of egregious examples of women being medically gaslit. There are those whose <a href="https://www.insider.com/doctors-told-student-pain-vomiting-from-partying-she-had-cancer-2022-5">cancer</a> reached an advanced stage before they could get a doctor to take them seriously. And those whose lives were imperilled by a doctor who dismissed their pain as anxiety, as postpartum depression, as not nearly as bad as they think it is. </p>
<p>Examples of medical gaslighting also accrue around chronic but poorly understood diseases. In recent years, there’s been the medical community’s slow and halting recognition of <a href="https://theconversation.com/people-with-long-covid-continue-to-experience-medical-gaslighting-more-than-3-years-into-the-pandemic-203744">long COVID</a>. Before that, it was long Lyme disease or chronic fatigue syndrome, as Jennifer Brea’s 2017 documentary <a href="https://www.unrest.film/">Unrest</a> movingly shows. </p>
<h2>Algorithmically out of whack</h2>
<p>Yet medical gaslighting is a far more complex creature than gaslighting in other contexts. While Gregory’s attempts to gaslight his wife were malicious and intentional, medical gaslighting quite often overlaps with a more basic problem in medicine: <a href="https://www.nytimes.com/2022/12/15/health/medical-errors-emergency-rooms.html">misdiagnosis</a>. </p>
<p>In many cases, misdiagnosis occurs not because an individual doctor is being malicious or even intentionally – though perhaps unconsciously – prejudiced, but because the symptoms they observe in the patient before them are <a href="https://www.nytimes.com/2022/03/28/well/live/gaslighting-doctors-patients-health.html">“algorithmically”</a> out of whack with the standard set of symptoms and characteristics they have been taught to look for and associate with different diseases. </p>
<p>Since these algorithms were explicitly built around <a href="https://www.sciencedaily.com/releases/2008/10/081015132108.htm">heterosexual white men</a>, it makes sense that the vast majority of those who have experienced medical gaslighting or misdiagnosis hail from beyond this extremely narrow band of the population. But even at a more basic level, individuals are simply not standard. Human bodies don’t conform as closely to the algorithms as medicine would ideally like them to. </p>
<p>“The bottom line,” as one doctor <a href="https://www.nytimes.com/2022/12/15/health/medical-errors-emergency-rooms.html">put it</a>, “is that diagnosis is hard.” It does not help that research into diagnosis is never as well-funded as research into treatment. </p>
<p>That’s not to say there aren’t any covert (or overt) Gregory Antons out there in medical practice, of course. But it does mean that if we want to address medical gaslighting, the answer is probably not as simple as training medical professionals to be more sensitive to their patient’s descriptions of their symptoms. </p>
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Read more:
<a href="https://theconversation.com/from-a-deranged-provocateur-to-ibms-failed-ai-superproject-the-controversial-story-of-how-data-has-transformed-healthcare-189362">From a 'deranged' provocateur to IBM's failed AI superproject: the controversial story of how data has transformed healthcare</a>
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<p>Indeed, the very foundation of modern medicine agitates against this kind of attention to individual symptoms, asking medical professionals instead to measure patients against a set of standards – to think statistically as they make their diagnostic decisions. </p>
<p>Until a much greater part of society is included in that statistical reckoning, we can expect medical gaslighting to remain a part of our medical experiences. And even if or when that happens, our system will still be one that grapples with the difficult task of matching the emphatically square holes of symptom and diagnostic categories with the differently shaped realities of individual symptoms and illness experiences.</p><img src="https://counter.theconversation.com/content/209611/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Caitjan Gainty has received funding for her "Healthy Scepticism" project from the Wellcome Trust. </span></em></p>More often than not, it is women who have been gaslighted by medical professionals.Caitjan Gainty, Senior Lecturer in the History of Science, Technology and Medicine, King's College LondonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2097042023-08-24T10:52:28Z2023-08-24T10:52:28ZWhat your hands say about your health<p>Your hands reveal a lot about the state of your health. This is something that has been recognised since at least the time of Hippocrates – the father of modern medicine.</p>
<p>The ancient Greek physician <a href="https://jamanetwork.com/journals/jama/fullarticle/1150736">first described “clubbing”</a> in a patient with empyema (where pus fills the space between the lungs and the membrane around it) in the fifth century BC. Clubbing is where the nail looks like an upside-down spoon, and it is still recognised as a sign of disease. Although nowadays, clubbing is linked to more than just empyema. It is also <a href="https://my.clevelandclinic.org/health/symptoms/24474-nail-clubbing">linked to</a> cystic fibrosis, cirrhosis of the liver and thyroid conditions.</p>
<p>Another nail change that can signal disease is Lindsay’s nails. This is where one or more nails are half white and half reddish brown. Around
<a href="https://onlinelibrary.wiley.com/doi/full/10.1002/ccr3.4426#ccr34426-bib-0007">50%</a> of people with <a href="https://www.nejm.org/doi/full/10.1056/nejmicm1406572">chronic kidney disease</a> have nails like this. But it can also be a sign of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8183706/">cirrhosis of the liver</a> and <a href="https://journal.chestnet.org/article/S0012-3692(15)41065-7/fulltext">Behcet’s disease</a>, a rare condition that causes inflammation of the blood vessels.</p>
<p><a href="https://pubmed.ncbi.nlm.nih.gov/13153107/">Terry’s nails</a>, where <a href="https://www.ccjm.org/content/ccjom/81/10/603.full.pdf">one or more fingernails</a> have a ground-glass appearance, can also be a sign of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6025669/">cirrhosis of the liver</a>, but they are also associated with type 2 diabetes, kidney failure and HIV. </p>
<figure class="align-right ">
<img alt="Terry's nails" src="https://images.theconversation.com/files/539806/original/file-20230727-23-j6jvf4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/539806/original/file-20230727-23-j6jvf4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/539806/original/file-20230727-23-j6jvf4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/539806/original/file-20230727-23-j6jvf4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/539806/original/file-20230727-23-j6jvf4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/539806/original/file-20230727-23-j6jvf4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/539806/original/file-20230727-23-j6jvf4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1005&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Typical ground glass appearance of Terry’s nails.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/w/index.php?curid=22101599">Hojasmuertas/Wikimedia commons</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
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</figure>
<p>And sounding a bit more medical and a bit less like a high street nail bar is <a href="https://www.ncbi.nlm.nih.gov/books/NBK559136/">Muehrcke’s nails</a>, which is where one or more horizontal lines run across the fingernails. This nail pattern indicates a decrease in the most abundant protein in the blood: <a href="https://www.ncbi.nlm.nih.gov/books/NBK459198/">albumin</a>. These nail markings can be an indicator of <a href="https://www.amjmed.com/article/S0002-9343(10)00297-4/fulltext">kidney disease</a>.</p>
<p>But sometimes changes in nail colour and pattern are not sinister and are merely signs of ageing. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3038811/">Neapolitan nails</a>, so called because of their three distinct colour zones, are often seen in people over the age of 70 and are nothing to worry about.</p>
<h2>Palms</h2>
<p>Nails aren’t the only part of the hand that can reveal ill health, though. The palms can tell a story too.</p>
<p>If you find your palms are becoming sweaty in the absence of nervousness, hot temperatures or exercise, it could be down to faulty nerve signals causing the sweat glands to become active. This can be benign, in which case it is called primary hyperhidrosis. But unexplained sweaty palms – and face, neck and armpits – can be a sign of thyroid problems. </p>
<p><a href="https://www.ncbi.nlm.nih.gov/books/NBK279480/">Hyperthyroidism</a> is where the thyroid gland in the neck produces too much <a href="https://www.ncbi.nlm.nih.gov/books/NBK500006/">thyroxine</a>. Excess of this hormone causes bodily processes to speed up and can be the cause of sweaty palms. Thankfully, this condition is easily treated with the right drugs. </p>
<p>A more concerning palm change is the appearance of small areas of red or purple discolouration on the palms of the hands and fingers. This can be a sign of bacterial <a href="https://www.nhs.uk/conditions/endocarditis/">endocarditis</a> (inflammation of the inside lining of the heart), which has a high <a href="https://bmccardiovascdisord.biomedcentral.com/articles/10.1186/s12872-021-01853-6">mortality rate</a>. </p>
<p>These discolourations come in two forms: <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3603816/">Osler’s nodes</a> and <a href="https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.112.127787">Janeway lesions</a>. Osler’s nodes are typically painful <a href="https://link.springer.com/article/10.1007/s11739-014-1063-x">red 1mm-10mm</a> coloured nodules on the fingers appearing for hours to days, whereas Janeway lesions are <a href="https://heart.bmj.com/content/91/4/516">irregular shaped with varying sizes</a> and typically seen on the palms and are not painful, lasting few days up to a few weeks.</p>
<p>Both these palm patterns are very serious and urgent medical attention should be sought. </p>
<h2>Pins and needles</h2>
<p>If you experience pins and needles in your hand that you can’t shake off, it might be a sign that you have <a href="https://www.nhs.uk/conditions/carpal-tunnel-syndrome/">carpal tunnel syndrome</a>. This is where a major nerve (the median nerve) in the wrist is being compressed, causing numbness, tingling or pain. </p>
<p>It usually gets better without treatment, but a wrist splint can help to relieve pressure on the nerve. People who are overweight or pregnant are at greater risk of carpal tunnel syndrome.</p>
<p>Pins and needles in the hand can also be a sign of diabetes. Raised blood sugar in diabetes causes <a href="https://www.webmd.com/diabetes/peripheral-neuropathy-risk-factors-symptoms">nerve damage</a> that manifests as <a href="https://www.nature.com/articles/s41572-019-0092-1">tingling or numbness</a> in the extremities, such as the hands. This condition is called “diabetic neuropathy”. </p>
<p>Everyone experiences pins and needles at some point, but if you get it a lot or it lasts a long time, you should see your doctor.</p>
<h2>Finger length</h2>
<p>The length of your fingers can give you some indication of your risk of developing certain diseases in later life. </p>
<p>The length of the index versus ring finger varies in men and women. In women, they are fairly equal in length, but in men, the ring finger is typically longer than the index finger. This is believed to be due to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5296424/">exposure to hormones in the womb</a>.</p>
<figure class="align-center ">
<img alt="Finger length comparison" src="https://images.theconversation.com/files/539916/original/file-20230728-21-ku5ia8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/539916/original/file-20230728-21-ku5ia8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=343&fit=crop&dpr=1 600w, https://images.theconversation.com/files/539916/original/file-20230728-21-ku5ia8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=343&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/539916/original/file-20230728-21-ku5ia8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=343&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/539916/original/file-20230728-21-ku5ia8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=431&fit=crop&dpr=1 754w, https://images.theconversation.com/files/539916/original/file-20230728-21-ku5ia8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=431&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/539916/original/file-20230728-21-ku5ia8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=431&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Your finger length can reveal how much testosterone you were exposed to in the womb.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/different-length-finger-index-ring-2132603433">logika600/Shutterstock</a></span>
</figcaption>
</figure>
<p>This longer ring than index finger relationship is associated with better performance in a <a href="https://pubmed.ncbi.nlm.nih.gov/16403410/">number of sports</a> in men and women, but also a risk of <a href="https://pubmed.ncbi.nlm.nih.gov/18163515/">developing knee and hip osteoarthritis</a> in women.</p>
<p>There is nothing you can do to change your finger length, but you can help stave off osteoarthritis by keeping a healthy weight, staying active and controlling your blood sugar levels. In fact, if you stick to that advice, you can stave off most illness.</p><img src="https://counter.theconversation.com/content/209704/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Adam Taylor does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Since the time of Hippocrates, doctors have looked at patients hands for signs of ill health.Adam Taylor, Professor and Director of the Clinical Anatomy Learning Centre, Lancaster UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2099252023-08-21T13:01:08Z2023-08-21T13:01:08ZThe order in which you acquire diseases could affect your life expectancy – new research<figure><img src="https://images.theconversation.com/files/542634/original/file-20230814-15-6ly3wb.jpg?ixlib=rb-1.1.0&rect=47%2C0%2C5310%2C3497&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Almost two-thirds of UK adults aged 65 and over possess two or more long-term health conditions.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/elderly-couple-tourists-sea-resort-1596444508">EvgL/Shutterstock</a></span></figcaption></figure><p><a href="https://doi.org/10.1016/S0140-6736(12)60240-2">More than 25%</a> of adults in the UK have two or more long-term health conditions. This increases to 65% for people older than 65 years, and to almost 82% for those aged 85 or older. </p>
<p><a href="https://doi.org/10.1016/S2468-2667(23)00098-1">Our study</a> assessed how a number of multiple long-term health conditions (<a href="https://www.nhs.uk/mental-health/conditions/psychosis/overview/">psychosis</a>, diabetes and congestive heart failure) develop over time, and what effect this can have on life expectancy. We chose these conditions because, together, they can lead to substantial reductions in how long someone lives.</p>
<p>We analysed the development of these conditions over a 20-year period for more than 1.6 million adults aged 25 and over. We used data held within the <a href="https://saildatabank.com/">SAIL databank</a>, which provides secure access to routinely collected anonymous health and administrative records for the population of Wales.</p>
<p>We also worked with patients and the public from across the UK to understand their experience of living with multiple long-term conditions. </p>
<p>Using statistical models, we examined the order and timing of developing psychosis, diabetes and congestive heart failure in patients of the same age, sex and area-level deprivation – and the related impact on their life expectancy. </p>
<h2>The impact of disease order</h2>
<p>We found that the order in which people developed these diseases had an important impact on their life expectancy. People who developed diabetes, psychosis and congestive heart failure, in that order, had the largest loss in life expectancy (approximately 13 years, on average).</p>
<p>People who developed the same conditions in a different order were less affected. So, for example, a 50-year-old man in an area of average deprivation could experience a difference in his life expectancy of more than 10 years, depending on the order in which he developed the three diseases. </p>
<p>Our research also identified that people who first developed diabetes, then psychosis and finally congestive heart failure carried a higher risk of developing the next long-term health condition, or dying within five years of their last diagnosis. </p>
<p>However, the development of further conditions is not always life-limiting. For example, people diagnosed with psychosis and diabetes – in any order – had a higher life expectancy than those diagnosed with psychosis alone. While this was a surprising finding, we expect people with diabetes to have more regular contact with health professionals through diabetic clinics, for example, which may improve their overall health. </p>
<p>Our study also found that congestive heart failure on its own, and in combination with psychosis (in any order), had a similar effect on life expectancy to the “worst case” combination of diabetes, psychosis and congestive heart failure (in that order). </p>
<figure class="align-center ">
<img alt="An empty bed in a hospital surrounded with medical equipment" src="https://images.theconversation.com/files/542796/original/file-20230815-25-8wyoa2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/542796/original/file-20230815-25-8wyoa2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/542796/original/file-20230815-25-8wyoa2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/542796/original/file-20230815-25-8wyoa2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/542796/original/file-20230815-25-8wyoa2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/542796/original/file-20230815-25-8wyoa2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/542796/original/file-20230815-25-8wyoa2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The application of this research could lead to improved outcomes for the NHS.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/national-health-service-uk-19th-march-608498993">Imran Khan's Photography/Shutterstock</a></span>
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</figure>
<p>This is the first study to examine how the order of developing multiple long-term conditions affects a person’s life expectancy. This research could be used to inform patients, healthcare providers and decision-makers on the appropriate identification of diseases and management of patient care. In turn, this could lead to improved outcomes for patients and the NHS. </p>
<p>Our research also helps to support healthcare delivery by looking at the factors that may increase a person’s risk of developing disease, as well as identifying potential opportunities for disease screening and earlier intervention.</p>
<h2>Applying our research</h2>
<p>Future research could evaluate the impact of screening programmes and interventions in delaying the development of further long-term conditions and extending life.</p>
<p>However, it is important to note that our research used information from routinely collected health records, which are not always accurate – some diagnoses may be missing or delayed. Also, diagnoses are not always accurately described. These are all important factors in being able to accurately estimate the impact of multiple long-term conditions on life expectancy. </p>
<p><a href="https://phenotypes.healthdatagateway.org/">Further research funded by Health Data Research UK</a>, the national institute for health data science, aims to harmonise how this data is collected and reported. Over time, this will improve the quality of information obtained from routinely collected health records for research. </p>
<p>While our study examined the development of one group of multiple long-term conditions, this approach could be replicated for any other combination of conditions – including the development of long-term health conditions following COVID-19 infection (known as long COVID), and the impact this has on quality of life.</p>
<p>Those living with multiple long-term conditions often experience increased use of healthcare services and medications, as well as greater difficulty with day-to-day tasks. This leads to a reduced quality of life as well as reduced life expectancy. </p>
<p>Our research has shown that the combination of long-term conditions and order in which you develop them may both have a substantial impact on your life expectancy. However, this relationship can be complex, and the development of further disease does not always reduce life expectancy.</p><img src="https://counter.theconversation.com/content/209925/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rhiannon Owen receives funding from the Academy of Medical Sciences (AMS), Health and Care Research Wales (HCRW), Heath Data Research UK (HDRUK), Medical Research Council (MRC), and the National Institute for Health and Care Research (NIHR). She is affiliated with the National Institute for Health and Care Excellence (NICE). </span></em></p>People who developed diabetes, psychosis and congestive heart failure, in that order, experienced the largest reduction in life expectancyRhiannon Owen, Professor of Statistics, Swansea UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2108102023-08-07T20:01:51Z2023-08-07T20:01:51ZPictures of pain: how a visual chatbot can help people with chronic pain<p>Chronic or persistent pain is the main reason people seek medical care in Australia. Yet, most chronic pain is incurable and relies on education, exercise and other interventions for management, making it a <a href="https://www.deloitte.com/au/en/services/economics/analysis/cost-pain-australia.html">complex, common and expensive health challenge</a>.</p>
<p>The challenge is more pronounced in the treatment of children and people with diverse needs, such as those with language deficits and varying learning abilities. </p>
<p>Our team of researchers from <a href="http://aehrc.csiro.au">CSIRO</a>, <a href="https://recover.centre.uq.edu.au/">RECOVER Injury Research Centre</a>, the <a href="https://metronorth.health.qld.gov.au/rbwh/healthcare-services/persistent-pain">Tess Cramond Pain and Research Centre</a> and the <a href="https://www.childrens.health.qld.gov.au/service-queensland-interdisciplinary-paediatric-persistent-pain/">Queensland Interdisciplinary Paediatric Pain Service</a> are exploring how therapeutic chatbots can help improve communication between people with chronic pain and health professionals.</p>
<p>To do this, we built a chatbot called <a href="https://twitter.com/RecoverResearch/status/1394776246525960195">Dolores</a>, with a unique feature: a canvas for users to describe their pain with drawings, sketches and doodles. We found that in this case, a picture truly is worth a thousand words. </p>
<h2>About Dolores</h2>
<p>Dolores’s main function is to help users report data on their own pain and provide personalised education. This can be used to enhance communication between users and health professionals and improve pain management.</p>
<p>Dolores is designed to prompt the user for more information, ask follow-up questions, and generally lead the conversation. </p>
<p>The chatbot tailors its responses to the user. It will respond to children with short answers and a limited vocabulary, and responses will gradually increase in complexity with the user’s age.</p>
<p>As the app often captures sensitive data, it was designed with privacy and ethical considerations in mind.</p>
<p>The technology behind Dolores is very different from the large language models behind chatbots such as <a href="https://theconversation.com/chatgpt-isnt-the-death-of-homework-just-an-opportunity-for-schools-to-do-things-differently-205053">ChatGPT</a>. It works from a knowledge base and conversation flow built by occupational, speech and physio therapists, based on diverse experience with clients of different ages. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/aristotle-and-the-chatbot-how-ancient-rules-of-logic-could-make-artificial-intelligence-more-human-142811">Aristotle and the chatbot: how ancient rules of logic could make artificial intelligence more human</a>
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<p>Dolores’s “brain” was built with help from hackathons and industry experts to ensure its responses are always focused on meeting the needs of users. Importantly, it will not give incorrect information or “hallucinate” responses.</p>
<h2>Pain history</h2>
<p>One thing Dolores is used for is to administer what is called a “pain history interview”. </p>
<p>In this process, Dolores asks questions about the onset, location and duration of the user’s pain. It also asks about the sensations and emotions associated with the pain and its impact on daily life, as well as the user’s understanding of pain and their perceptions of different kinds of treatment.</p>
<p>The user can respond to Dolores by talking, typing or drawing. Dolores then produces a transcript which the user can choose to share with their medical professional. </p>
<p>The transcript below was generated using speech recognition from a conversation with an individual living with chronic pain.</p>
<blockquote>
<p><strong>Dolores</strong>: Could you describe or draw what your pain physically feels like?</p>
<p><strong>Client</strong>: Sometimes it’s different … it’s not all the same … then all the days it’s burning tingling </p>
<p><strong>Dolores</strong>: Could you tell me or draw how your pain makes you feel? Physically and mentally.</p>
<p><strong>Client</strong>: Shit makes me feel like shit </p>
<p><strong>Dolores</strong>: And how long have you been in pain for?</p>
<p><strong>Client</strong>: Since I was about 15 years old</p>
<p><strong>Dolores</strong>: Can you tell me or draw how your pain began?</p>
<p><strong>Client</strong>: I am not sure it just began</p>
<p><strong>Dolores</strong>: And how does your pain affect your day-to-day life?</p>
<p><strong>Client</strong>: It affects everything even down to driving, shopping, taking my kids to school. Even just making a cup of tea</p>
<p><strong>Dolores</strong>: What do you believe is the cause of your pain?</p>
<p><strong>Client</strong>: Autoimmune disease and follow on disorders from that</p>
<p><strong>Dolores</strong>: What do you believe are the best treatments for managing your pain?</p>
<p><strong>Client</strong>: Nothing really helps it’s just a matter of learning to deal with it and manage it</p>
</blockquote>
<p>While this example was verbal and detailed, some users – particularly children and adolescents – preferred to doodle. For example, a volcano erupting symbolised a pain flare-up; lightning strikes symbolised sharp, sudden pain; and swirls and waves symbolised cyclic pain. </p>
<p>When asking about the impact of pain on daily life, we received an abundance of stick figures and faces depicting sorrow and loss of identity. </p>
<h2>The future</h2>
<p>In its present state, Dolores can interpret the colours used in a drawing, but not the drawing itself. <a href="https://pubmed.ncbi.nlm.nih.gov/25822055/">Research</a> shows red and black, for example, are commonly used when “painting pain”.</p>
<p>So when soliciting more information about a doodle, Dolores might say things like “That’s a lot of red. What is it?” </p>
<p>The next version of Dolores will have sketch recognition, which we believe will give her more insight and provide extended engagement with clients. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/introducing-edna-the-chatbot-trained-to-help-patients-make-a-difficult-medical-decision-150847">Introducing Edna: the chatbot trained to help patients make a difficult medical decision</a>
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</p>
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<p>Dolores was received positively in cohorts of patients across different age groups. It will soon be used in the broader chronic pain intervention platform, <a href="https://recover.centre.uq.edu.au/pain-roadmap-mobile-app-help-people-chronic-pain">Pain ROADMAP</a>. </p>
<p>Dolores is a step forward in catering for clients and communities whose language may differ from the clinician and for children and individuals with language disorders, who often have <a href="https://www.spectrumnews.org/news/autistic-children-disproportionately-affected-by-chronic-pain/">higher rates of chronic pain</a> and have difficulties communicating about their pain. </p>
<p>We believe a chatbot that identifies and conveys the symbols of pain to a clinician can be an effective tool for enhanced communication, leading to more effective pain management.</p><img src="https://counter.theconversation.com/content/210810/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nicole Andrews is affiliated with RECOVER Injury Research Centre, The University of Queensland and the Tess Cramond Pain and Research Centre, Metro North Hospital and Health Service.</span></em></p><p class="fine-print"><em><span>David Ireland does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A chatbot that lets users express their feelings by drawing may help communication and treatment for people with chronic pain.David Ireland, Senior Research Scientist at the Australian E-Health Research Centre, CSIRONicole Emma Andrews, Research Fellow, The University of QueenslandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2096802023-08-01T20:15:56Z2023-08-01T20:15:56ZMigraine: A common headache disorder that is underdiagnosed and undertreated<figure><img src="https://images.theconversation.com/files/540507/original/file-20230801-29-fazyxx.jpg?ixlib=rb-1.1.0&rect=0%2C170%2C5317%2C3556&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">In Canada, migraine affects 4.7 per cent of men and 11.8 per cent of women.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/migraine-a-common-headache-disorder-that-is-underdiagnosed-and-undertreated" width="100%" height="400"></iframe>
<p>Migraine is a common chronic health condition and a <a href="https://doi.org/10.1186/s10194-016-0699-5">leading cause of disability</a> globally. However, even in Canada, with a universal health-care system, migraine is <a href="https://doi.org/10.1177/03000605221126380">underdiagnosed and undertreated</a>.</p>
<p>This is an important public health issue since migraine is associated with <a href="https://doi.org/10.1212/WNL.55.5.624">reduced quality of life</a>, affecting <a href="https://doi.org/10.3389/fpsyg.2023.1129926">social life and relationships, productivity and overall health</a>.</p>
<p>Increasing awareness of migraine symptoms is critical for those living with undiagnosed migraine, since getting a clinical diagnosis is the first step to receiving appropriate and effective care. </p>
<p>But this alone will not solve the burden associated with migraine. Policymakers need to act now to remove the barriers to accessing migraine medications in Canada, particularly as new medications are marketed. </p>
<h2>What is migraine?</h2>
<p><a href="https://doi.org/10.1177/0333102417738202">Migraine is a neurological disorder</a> characterized by moderate to severely painful headache attacks. Pain typically affects one side of the head and presents with nausea or vomiting, sensitivity to light or sound and interference with routine physical activity. </p>
<figure class="align-center ">
<img alt="A woman with her hands covering her face, with streaks of coloured light around her head" src="https://images.theconversation.com/files/540508/original/file-20230801-25-qssv9r.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/540508/original/file-20230801-25-qssv9r.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/540508/original/file-20230801-25-qssv9r.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/540508/original/file-20230801-25-qssv9r.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/540508/original/file-20230801-25-qssv9r.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/540508/original/file-20230801-25-qssv9r.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/540508/original/file-20230801-25-qssv9r.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Aura, which affects about one in five people with migraine, can manifest as transient visual, sensory (such as tingling or numbness), movement or speech disturbances.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Around 20 per cent of individuals with migraine have <a href="https://www.mayoclinic.org/diseases-conditions/migraine-with-aura/multimedia/migraine-aura/vid-20084707">aura</a>, which manifests as transient visual, sensory (such as tingling or numbness), movement, speech or other central nervous system disturbances.</p>
<p>Migraine can be episodic (fewer than 15 headache days per month) or chronic (15 or more headache days per month for longer than three months). In both cases, migraine is considered a <a href="https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases">chronic health condition</a>, which means the disease tends to be long-term and is caused by a combination of genetic, physiological, environmental and behavioural factors. </p>
<h2>Impact of migraine</h2>
<p>The association between migraine with <a href="https://doi.org/10.1212/WNL.55.5.624">poor quality of life</a> and <a href="https://migrainecanada.org/disability-and-migraine-2/">disability</a> is well-established. Migraine is associated with <a href="https://doi.org/10.1017/cjn.2021.75">lost productivity</a> and with <a href="https://doi.org/10.1186/s10194-020-1084-y">other health conditions</a> including asthma, epilepsy and cardiovascular disease. Furthermore, migraine can <a href="https://doi.org/10.1186/s10194-022-01388-x">contribute to mental health problems</a>, including depression and anxiety.</p>
<p>The <a href="https://doi.org/10.1186/s10194-020-01208-0">2019 Global Burden of Disease Study</a> revealed migraine is the leading cause of disability in young women and second overall (in all ages and both sexes), in terms of years lived with a disability, a measure of the impact of a disease on quality of life. </p>
<p>This is important since migraine is <a href="https://doi.org/10.1016/S0140-6736(18)32279-7">extremely common</a> globally. Canada is no stranger to this trend, where migraine affects <a href="https://pubmed.ncbi.nlm.nih.gov/24941316/">4.7 per cent of men and 11.8 per cent of women</a> each year. The prevalence of migraine is highest among women and girls of reproductive age. It affects 11 per cent of 12- to 29-year-old women and girls, and nearly 18 per cent of women aged 30 to 49 years. </p>
<h2>Historically, migraine has been underdiagnosed</h2>
<figure class="align-center ">
<img alt="A man lying in bed with a pained expression, with his hand to his head" src="https://images.theconversation.com/files/540506/original/file-20230801-27-czuoe6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/540506/original/file-20230801-27-czuoe6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/540506/original/file-20230801-27-czuoe6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/540506/original/file-20230801-27-czuoe6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/540506/original/file-20230801-27-czuoe6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/540506/original/file-20230801-27-czuoe6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/540506/original/file-20230801-27-czuoe6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">In people with chronic migraine specifically, underdiagnosis may be driven by the failure to receive a correct diagnosis from a health-care provider.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<p>These numbers <a href="https://doi.org/10.1177/03000605221126380">underestimate the true prevalence of migraine</a> since they only count cases diagnosed by a health-care professional. <a href="https://doi.org/10.1212/01.wnl.0000323925.29520.e7">Factors influencing diagnosis</a> include an individual’s ability and willingness to access care, and a physician identifying and correctly diagnosing migraine. </p>
<p><a href="https://doi.org/10.1017/s0317167100010738">One study</a> of women in Canada reported that only 51 per cent of those identified as having migraine ever consulted a physician about the headaches they experience. Data suggests that <a href="https://doi.org/10.1212/01.wnl.0000323925.29520.e7">health-seeking behaviour contributes to the underdiagnosis of episodic migraine</a>. </p>
<p>However, research has demonstrated that for chronic migraine, <a href="https://doi.org/10.1212/01.wnl.0000323925.29520.e7">most individuals report consulting a physician about their headaches</a>. This suggests that in people with chronic migraine specifically, underdiagnosis may be driven by the failure to receive a correct diagnosis from a health-care provider.</p>
<p>In individuals with migraine, receiving a diagnosis is associated with being <a href="https://doi.org/10.1046/j.1526-4610.2001.041007638.x">female and with older age</a>. A study in the United States also identified <a href="https://doi.org/10.1046/j.1526-4610.2001.041007638.x">higher income</a> as a factor. </p>
<h2>Migraine-specific medications are under-used</h2>
<p>Medications approved specifically to treat migraine attacks are <a href="https://doi.org/10.1001/jama.2021.7939">effective</a> at relieving symptoms in individuals who do not experience relief from over-the-counter options, including acetaminophen (such as Tylenol) and ibuprofen (such as Advil).</p>
<p>Triptans are among the oldest migraine-specific medications, and <a href="https://www.aafp.org/pubs/afp/issues/2018/0215/p243.html">the first-line treatment for migraine</a> for those who do not get relief from over-the-counter medications. However, because they affect blood vessels, triptans should not be used by people with certain types of underlying vascular disease.</p>
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<img alt="A hand holding a package of medication labelled eletriptan hydrobromide tablets" src="https://images.theconversation.com/files/540509/original/file-20230801-15-razjr1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/540509/original/file-20230801-15-razjr1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/540509/original/file-20230801-15-razjr1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/540509/original/file-20230801-15-razjr1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/540509/original/file-20230801-15-razjr1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/540509/original/file-20230801-15-razjr1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/540509/original/file-20230801-15-razjr1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Triptans have been available in Canada since the 1990s.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<p>Triptans have been available in Canada since the 1990s. The Canadian Headache Society strongly <a href="https://doi.org/10.1017/S0317167100118943">recommends their use</a> in migraine therapy. Seven triptans are approved by Health Canada for use in adults. </p>
<p>Despite this, many individuals living with migraine in Canada do not use or have not tried migraine-specific medications. A <a href="https://doi.org/10.1177/03000605221126380">recent review</a> found that most individuals with episodic migraine had not tried migraine-specific medication and use non-prescription medications to manage migraine symptoms, indicating a gap in the medical management of migraine in Canada. </p>
<p><a href="https://doi.org/10.1111/head.13918">Challenges to accessing migraine-specific medications in Canada</a> include their high cost and limited coverage through provincial public drug insurance programs, such as the Ontario Drug Benefit.</p>
<p>Provider knowledge may also explain the underuse of migraine-specific therapies in Canada. Opiates and non-steroidal anti-inflammatory drugs are prescribed more commonly than migraine-specific therapies <a href="https://doi.org/10.1155/2011/182867">in Ontario emergency departments</a>, indicating room for physician training in treating migraine.</p>
<p><a href="https://doi.org/10.1503/cmaj.221607">As new migraine-specific medications are approved in Canada</a>, it is important that those who need them can access these treatments. Initiatives such as <a href="https://www.cbc.ca/news/canada/british-columbia/b-c-adds-migraine-medication-to-coverage-but-life-changing-drug-left-off-the-list-1.6833947">British Columbia’s recent decision</a> to cover the cost of certain calcitonin gene-related peptide (CGRP) inhibitors can help. These medications are used to prevent migrainous headaches, and cost over $600 per month. </p>
<h2>Steps you can take if you think you might have migraine</h2>
<p><a href="https://migrainebuddy.com/">Migraine Buddy</a> is a migraine tracking app with a questionnaire to help individuals determine if they may have migraine and should discuss their symptoms with a physician.</p>
<p>Effective treatment options exist to manage migraine, which can be accessed through a physician. Tools such as the <a href="https://doi.org/10.1111/head.13428">Traffic Light of Headache</a>, with green, yellow and red corresponding to headache severity, can assist individuals with migraine in making treatment decisions to manage their symptoms. </p>
<p>With access to appropriate treatments, individuals living with migraine can manage their condition and live life to the fullest.</p><img src="https://counter.theconversation.com/content/209680/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Melina Albanese receives funding from the Guiding interdisciplinary Research On Women’s and girls’ health and Wellbeing (GROWW) program and the Queen Elizabeth II Graduate Scholarship in Science and Technology. </span></em></p>Increasing awareness of migraine symptoms is critical for those living with undiagnosed migraine, since getting a diagnosis is the first step to receiving appropriate and effective care.Melina Albanese, PhD Candidate (Epidemiology), University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2037862023-05-30T11:37:27Z2023-05-30T11:37:27ZAnkylosing spondylitis: machine learning could pave the way for early diagnosis of inflammatory arthritis<figure><img src="https://images.theconversation.com/files/526271/original/file-20230515-21229-5sc62o.jpg?ixlib=rb-1.1.0&rect=0%2C18%2C4140%2C3526&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An X-ray image comparing a healthy spine and one showing signs of ankylosing spondylitis.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/ls-spine-xray-image-ap-view-274780355">Suttha Burawonk/Shutterstock</a></span></figcaption></figure><p><a href="https://www.nhs.uk/conditions/ankylosing-spondylitis/">Ankylosing spondylitis</a> (AS) is the second most common type of inflammatory arthritis, often affecting teenagers and young adults. Symptoms of AS can include back pain, stiffness, joint inflammation (arthritis), inflammation where tendons attach to bones (enthesitis), and fatigue. Over time, these symptoms can lead to spinal fusion, which significantly affects quality of life, particularly in young people.</p>
<p>Unfortunately, diagnosing AS can be a lengthy process, taking up to ten years from the onset of symptoms and usually requiring X-rays. The slow progression of the condition, coupled with the lack of a definitive test, contributes to these delays. </p>
<p>However, early detection of the condition can make a tremendous difference, halting the degenerative process and preserving a good quality of life for those affected.</p>
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Read more:
<a href="https://theconversation.com/unexplained-lower-back-pain-it-could-be-ankylosing-spondylitis-56809">Unexplained lower back pain? It could be ankylosing spondylitis</a>
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<p>Our study explored the potential of using routinely collected healthcare data from GPs and hospitals, combined with advanced machine learning techniques, to identify AS at an earlier stage. Machine learning involves using algorithms to analyse sample data, enabling predictions and decisions without explicit programming. </p>
<p>We analysed data separately for men and women, and <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0279076">our findings</a> could transform the way in which GPs detect and diagnose AS.</p>
<h2>A valuable tool</h2>
<p>To conduct our study, we used anonymous data from a national data repository at Swansea University Medical School. Patients with AS were identified and matched with people with no record of a diagnosis.</p>
<p>Our analysis of this data found that factors such as lower back pain, <a href="https://www.nhs.uk/conditions/uveitis/">uveitis</a> (inflammation of the middle layer of the eye), and use of non-steroidal anti-inflammatory drugs before the age of 20 were factors associated with an increased risk of developing AS in men. </p>
<p>In contrast, our model revealed that women tend to experience AS symptoms at a later age, and often rely on multiple pain relief medications compared with men. This possibly indicates a higher likelihood of misdiagnosis of the condition in women.</p>
<p>Machine learning is a valuable tool for profiling and understanding the characteristics of people who are likely to develop AS. It performs well in test data sets with artificially high prevalence rates. </p>
<p>However, when applied to the general population in GPs and hospitals, where AS is rare, even the best model can only achieve a low positive predictive value of 1.4%. (That’s the probability that following a positive test result, the individual will truly have AS.)</p>
<p>So, using multiple models over time may be necessary to narrow down the population and improve this predictive value, which would result in a faster AS diagnosis.</p>
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<img alt="A person wearing a long sleeved white top faces away from the camera clasping the bottom of their back." src="https://images.theconversation.com/files/526283/original/file-20230515-24356-b8m735.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526283/original/file-20230515-24356-b8m735.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526283/original/file-20230515-24356-b8m735.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526283/original/file-20230515-24356-b8m735.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526283/original/file-20230515-24356-b8m735.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526283/original/file-20230515-24356-b8m735.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526283/original/file-20230515-24356-b8m735.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Ankylosing spondylitis is the second most common cause of inflammatory arthritis.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/herniated-discspondylosis-scoliosis-asian-woman-she-1481955053">jaojormami/Shutterstock</a></span>
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<h2>Acknowledge the challenges too</h2>
<p>Machine learning techniques have tremendous potential to improve patient care. But it is also crucial to acknowledge the challenges associated with using these techniques effectively. </p>
<p>These models depend on high-quality data that is diverse and comprehensive to produce reliable, accurate results. But healthcare data can be limited due to privacy concerns, data sensitivity and lack of standardisation. These limitations may therefore compromise the accuracy and reliability of the models.</p>
<p>It’s important to acknowledge that machine learning in relation to this topic is still in its infancy. To develop this further, we will need to gather more detailed data to improve prediction rates and clinical usefulness.</p>
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Read more:
<a href="https://theconversation.com/from-a-deranged-provocateur-to-ibms-failed-ai-superproject-the-controversial-story-of-how-data-has-transformed-healthcare-189362">From a 'deranged' provocateur to IBM's failed AI superproject: the controversial story of how data has transformed healthcare</a>
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<p>But our study demonstrates the enormous potential that machine learning has to help identify people with AS and better understand their diagnostic journeys through the health system. </p>
<p>We know that the early detection and diagnosis of AS is crucial to secure the best outcomes for patients. We believe machine learning could help with this. It could also empower GPs, helping them to detect and refer patients more effectively and efficiently.</p><img src="https://counter.theconversation.com/content/203786/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jonathan Kennedy does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Our new study demonstrates the enormous potential that machine learning has to help identify people with ASJonathan Kennedy, Data Lab Manager, Swansea UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1740562023-04-17T20:02:51Z2023-04-17T20:02:51ZFrom Trump to Winnie the Pooh: how we use diagnosis as a narrative tool to make sense of dysfunction and deviance<figure><img src="https://images.theconversation.com/files/520361/original/file-20230411-16-rb7hr6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">diagnosis</span> </figcaption></figure><p>During these pandemic times, the importance of diagnosis is driven home forcefully. Being diagnosed with COVID makes sense of symptoms, determines what we should do about them, and shapes our collective responsibility to the community.</p>
<p>Diagnosing seems a pretty straightforward business. You have symptoms, the doctor examines or tests you, you get a name for what ails you. </p>
<p>But the reality is far more complex. Diagnoses are actually social agreements about what counts as disease. </p>
<p>Of course, there’s dysfunction of some kind at the start, but not all dysfunctions get diagnostic status, some <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/j.1467-9566.2011.01443.x">diagnoses shift over time</a> from one category to another and different diagnoses will have different connotations. </p>
<p>Even a diagnosis as seemingly clear-cut as COVID is more than just a label stuck to a virus. You can have presumed COVID, historical COVID, alpha, delta or omicron. You can have long COVID.</p>
<p>The latter is diagnosed as COVID, even when the virus is long gone and it could in fact be something else: chronic fatigue syndrome or fibromyalgia. Long COVID may be a particularly visible form of post-viral fatigue. That would require yet another diagnosis.</p>
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Read more:
<a href="https://theconversation.com/covid-testing-led-to-new-techniques-of-disease-diagnosis-progress-mustnt-stop-now-201406">COVID testing led to new techniques of disease diagnosis: progress mustn’t stop now</a>
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<h2>Diagnosis as storytelling</h2>
<p>Diagnosis is so important to understanding our lives and those around us that it’s often applied outside of the health setting.</p>
<p>“Doing diagnosis” has become a popular form of entertainment. TV shows such as House use diagnostic mysteries to underpin plots – less Whodunit and more Whatisit.</p>
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<img alt="Surgeons in the operating theatre" src="https://images.theconversation.com/files/520365/original/file-20230411-582-zudtyl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/520365/original/file-20230411-582-zudtyl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/520365/original/file-20230411-582-zudtyl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/520365/original/file-20230411-582-zudtyl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/520365/original/file-20230411-582-zudtyl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/520365/original/file-20230411-582-zudtyl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/520365/original/file-20230411-582-zudtyl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=504&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">TV shows like House play on diagnostic mysteries to drive the plot.</span>
<span class="attribution"><span class="source">Getty Images</span></span>
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<p>Does Donald Trump have a narcissistic personality? Was Joan of Arc schizophrenic? What was the cause of Richard III’s hunchback? And even, does Winnie the Pooh have obsessive compulsive disorder?</p>
<p>What is interesting in this fascination with Trump’s presumed narcissism, or even the psychic health of Jesus, is less whether these diagnoses are valid and explanatory, but more how diagnostic frameworks have become dominant ways of telling stories.</p>
<p>A diagnosis is a story, in and of itself. When a doctor says “you have pneumonia”, they have actually said:</p>
<blockquote>
<p>You have an infection of your lungs, probably caused by bacteria or a virus and possibly triggered by that cold you had last week. It will incapacitate you but is likely to be self-limiting if all goes well. Stay at home and take your antibiotics.</p>
</blockquote>
<p>You can repeat that story by saying the same thing to your employer or your friends. They will know the narrative arc.</p>
<h2>Stories and deviance</h2>
<p>Diagnostic stories are explanations of deviance. By “deviance” we mean the sociological sense of the term: an inability to meet social expectations of behaviour, belief or experience.</p>
<p>To explain deviance, we often defer to diagnosis. Having visions, having an inflated sense of self-worth, being lethargic and unable to keep up with the pace of others are all somehow outside of normal expectations. Diagnosing them as psychosis, narcissism or depression is one way of making sense.</p>
<p>Diagnosis is also used as a storytelling technique for dead people, fictional characters and politicians. Vincent Van Gogh, for example, who died of a self-inflicted gunshot, has received <a href="https://doi.org/10.1176/appi.ajp.159.4.519">retrospective diagnoses</a> ranging from depression to bipolar disorder, temporal lobe epilepsy and acute intermittent porphyria.</p>
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<img alt="People in front of a large-scale self portrait of Vincent van Gogh." src="https://images.theconversation.com/files/520642/original/file-20230412-24-mz1dym.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/520642/original/file-20230412-24-mz1dym.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/520642/original/file-20230412-24-mz1dym.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/520642/original/file-20230412-24-mz1dym.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/520642/original/file-20230412-24-mz1dym.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/520642/original/file-20230412-24-mz1dym.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/520642/original/file-20230412-24-mz1dym.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Many people have attempted to diagnose the painter Vincent van Gogh posthumously.</span>
<span class="attribution"><span class="source">Uriel Sinai/Getty Images</span></span>
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<p>More than 150 scientific authors have thrown themselves at finding a diagnosis to explain his deviance. Each diagnostic proposition is an example of the desire to understand Van Gogh. </p>
<p>In similar style, the analysis of Arthur Fleck in the film Joker is replete with learned specialists picking up what the film got wrong, what <a href="https://psychcentral.com/pro/the-joker-mental-status-examination">diagnosis he might actually have</a> or what the impact of his candidate diagnoses might be on real-world sufferers. </p>
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Read more:
<a href="https://theconversation.com/the-jokers-origin-story-comes-at-a-perfect-moment-clowns-define-our-times-123009">The Joker’s origin story comes at a perfect moment: clowns define our times</a>
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<p>The diagnoses proposed for Joker include psychopathy, pseudobulbar affect, schizotypal personal disorder and many more. But, Fleck doesn’t exist and the cinematic objective of suspending disbelief constructs a character, not a patient. </p>
<p>Similarly, Winnie the Pooh does not have obsessive compulsive disorder, Roo is not autistic and Tigger does not have ADHD. They are make believe. While one could argue these stories serve as ways of helping children to see themselves, stories are sometimes just stories. Not everything is a cautionary tale, an educational tool or a self-reflexive device. </p>
<h2>Medicalising experiences</h2>
<p>The social practice of diagnosis as a way of talking about characters reflects our contemporary understanding of disease and illness as the master narrative to explain deviance, and to legitimise the diagnoses themselves.</p>
<p>These stories say more about us, the diagnosers, and our contemporary views, than the lives of those they seek to describe. But this practice is not without its downsides. </p>
<p>By using diagnosis to explain people, we medicalise our experience of the world and shut down other avenues of explanation. Calling someone a narcissist to explain political behaviour means we’ve given up on politics. We see pathology as the undergirding explanation for unpalatable policy, rather than structural failure.</p>
<p>Just as explaining an imaginary character via diagnosis means we’ve lost faith in stories. Winnie the Pooh is simply a child’s toy “of very little brain.”</p><img src="https://counter.theconversation.com/content/174056/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Diagnosis is more than the medical process of identifying an illness. It’s a social agreement about what counts as disease and a storytelling tool to make sense of dysfunction.Annemarie Jutel, Professor of Health, Te Herenga Waka — Victoria University of WellingtonGinny Russell, University of ExeterLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1966512023-03-29T00:56:43Z2023-03-29T00:56:43ZObsessive compulsive disorder is more common than you think. But it can take 9 years for an OCD diagnosis<figure><img src="https://images.theconversation.com/files/511868/original/file-20230223-25-gc8koi.jpg?ixlib=rb-1.1.0&rect=1%2C5%2C997%2C770&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/man-obsessive-compulsive-disorder-placing-corn-1838649955">Shutterstock</a></span></figcaption></figure><p>Obsessive compulsive disorder, or OCD, is a <a href="https://www.sciencedirect.com/science/article/abs/pii/S2211364916301579">misunderstood</a>
mental illness despite affecting <a href="https://pubmed.ncbi.nlm.nih.gov/18725912">about one in 50 people</a> – that’s about half a million Australians.</p>
<p>Our <a href="https://www.tandfonline.com/doi/full/10.1080/00050067.2023.2189003">new research</a> shows how long and fraught the path to diagnosis and treatment can be. </p>
<p>This initial study showed it takes an average of almost nine years to receive a diagnosis of OCD and about four months to get some form of help.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/no-ocd-in-a-pandemic-doesnt-necessarily-get-worse-with-all-that-extra-hand-washing-157961">No, OCD in a pandemic doesn't necessarily get worse with all that extra hand washing</a>
</strong>
</em>
</p>
<hr>
<h2>What is OCD?</h2>
<p>OCD affects children, adolescents and adults. <a href="https://www.nature.com/articles/mp200894">About 60%</a> report symptoms before the age of 20.</p>
<p>One misconception is that OCD is mild: someone who is extra tidy or likes cleaning. You might have even heard someone say they are “<a href="https://theconversation.com/you-cant-be-a-little-bit-ocd-but-your-everyday-obsessions-can-help-end-the-conditions-stigma-49265">a little bit OCD</a>” while joking about having beautiful stationery.</p>
<p>But OCD is not enjoyable. Obsessions are highly distressing and there are repetitive, intrusive thoughts a person with OCD can’t control. They might believe, for instance, they or their loved ones are in grave danger. </p>
<p><a href="https://iocdf.org/about-ocd/">Compulsions</a> are actions that temporarily alleviate, but ultimately exacerbate, this distress, such as checking the door is locked. People with OCD spend hours each day consumed by this cycle, instead of their normal activities, such as school, work or having a social life. </p>
<p>It can also be very distressing for <a href="https://www.tandfonline.com/doi/abs/10.1586/ern.11.200">family members</a> who often end up completing rituals or providing excessive reassurance to the person with OCD.</p>
<p><div data-react-class="InstagramEmbed" data-react-props="{"url":"https://www.instagram.com/reel/Cl7ElJqBg4f","accessToken":"127105130696839|b4b75090c9688d81dfd245afe6052f20"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/you-cant-be-a-little-bit-ocd-but-your-everyday-obsessions-can-help-end-the-conditions-stigma-49265">You can't be 'a little bit OCD' but your everyday obsessions can help end the condition's stigma</a>
</strong>
</em>
</p>
<hr>
<h2>How is it diagnosed?</h2>
<p>People with OCD often don’t tell others about their disturbing thoughts or repetitive rituals. They often feel <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/%28SICI%291099-0879%28199905%296%3A2%3C80%3A%3AAID-CPP188%3E3.0.CO%3B2-C">ashamed or worried</a> that by telling someone their disturbing thoughts, they might become true.</p>
<p>Doctors <a href="https://www.ncbi.nlm.nih.gov/books/NBK56470/#ch2">don’t always ask about</a> OCD symptoms when people first seek treatment. </p>
<p>Both lead to delays getting correctly diagnosed.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1399443462152404993"}"></div></p>
<p>When people do feel comfortable talking about their OCD symptoms, a diagnosis might be made by a GP, psychologist or other health-care professional, such as a psychiatrist. </p>
<p>Sometimes OCD can be <a href="https://link.springer.com/article/10.1007/s10566-009-9092-8">tricky to differentiate</a> from other conditions, such as eating disorders, anxiety disorders or autism. </p>
<p>Having an additional mental health diagnosis <a href="https://www.nature.com/articles/s41572-019-0102-3">is common</a> in people with OCD. In those cases, a health-care provider experienced in OCD is helpful. </p>
<p>To diagnose OCD, the health professional asks people and/or their families questions about the presence of obsessions and/or compulsions, and how this impacts their life and family. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/more-than-a-habit-when-to-worry-about-nail-biting-skin-picking-and-other-body-focused-repetitive-behaviours-102263">More than a habit? When to worry about nail biting, skin picking and other body-focused repetitive behaviours</a>
</strong>
</em>
</p>
<hr>
<h2>How is it treated?</h2>
<p>After someone receives a diagnosis, it helps to learn more about OCD and what treatment involves. Great places to start are the <a href="https://iocdf.org">International OCD Foundation</a> and <a href="https://www.ocduk.org">OCD UK</a>. </p>
<p>Next, they will need to find a health-care provider, usually a psychologist, who offers a special type of psychological therapy called “exposure and response prevention” or ERP.</p>
<p>This is a type of
<a href="https://theconversation.com/explainer-what-is-cognitive-behaviour-therapy-37351">cognitive-behavioural therapy</a> that is a <a href="https://doi.org/10.1016/j.jocrd.2021.100684">powerful, effective treatment</a> for OCD. It’s recommended people with OCD try this first.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/511870/original/file-20230223-25-ge0aea.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Man with dreadlocks sitting on sofa talking to therapist" src="https://images.theconversation.com/files/511870/original/file-20230223-25-ge0aea.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/511870/original/file-20230223-25-ge0aea.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/511870/original/file-20230223-25-ge0aea.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/511870/original/file-20230223-25-ge0aea.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/511870/original/file-20230223-25-ge0aea.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/511870/original/file-20230223-25-ge0aea.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/511870/original/file-20230223-25-ge0aea.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">A type of psychological therapy known as ‘exposure and response prevention’ is recommended first.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/positive-black-man-talking-to-female-therapist-5699421/">Alex Green/Pexels</a></span>
</figcaption>
</figure>
<p>It involves therapists helping people to understand the cycle of OCD and how to break that cycle. They support people to deliberately enter anxiety-provoking situations while resisting completing a compulsion. </p>
<p>Importantly, people and their ERP therapist <a href="https://pubmed.ncbi.nlm.nih.gov/18005936/">decide together</a> what steps to take to truly tackle their fears. </p>
<p>People with OCD learn new thoughts, for example, “germs don’t always lead to illness” rather than “germs are dangerous”.</p>
<p>There are a range of medications that also <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4967667/">effectively</a> <a href="https://pubmed.ncbi.nlm.nih.gov/27663940/">treat</a> OCD. But more research is needed to know more about when a medication should be added. For most people these are best considered a “boost” to help ERP.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/brain-scans-reveal-why-it-is-so-difficult-to-recover-from-ocd-and-hint-at-ways-forward-74092">Brain scans reveal why it is so difficult to recover from OCD – and hint at ways forward</a>
</strong>
</em>
</p>
<hr>
<h2>But not everything goes to plan</h2>
<p>Delays in being diagnosed is only the start:</p>
<ul>
<li><p>treatment is challenging to access. Only <a href="https://www.sciencedirect.com/science/article/abs/pii/S0887618518301038?via%3Dihub">30% of clinicians</a> in the United States offer ERP therapy. There is likely a similar situation in Australia</p></li>
<li><p>many people receive therapies that appear credible, <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/cpsp.12337?casa_token=Wn3bgnvINSsAAAAA%3A2sqam0BKtCzFA680_f6ln4scp1SKVpN_cOB6Tg8vQyEiNDZPwS-Z-NNveLelKYF6iz4PFqQSXyHKZYJS">but lack evidence</a>, such as general cognitive therapy that is not tailored to the mechanisms maintaining OCD. Inappropriate treatments waste valuable time and effort that the person could use to recover. Ineffective treatments can make OCD symptoms worse</p></li>
<li><p>even when someone receives first-line, evidence-based treatments, <a href="https://www.sciencedirect.com/science/article/pii/S0005796722001413?via%3Dihub">about 40-60%</a> of people don’t get better</p></li>
<li><p>there are no Australian clinical treatment guidelines, nor state or national clinical service plans for OCD. This makes it hard for health-care providers to know how to treat it</p></li>
<li><p>there has been <a href="https://journals.sagepub.com/doi/full/10.1177/00048674221125595">relatively little research funding</a> spent on OCD in the past ten years, compared with, for example, psychosis or dementia.</p></li>
</ul>
<h2>What can we do?</h2>
<p>Real change demands collaboration between health-care professionals, researchers, government, people with OCD and their families to advocate for proportionate funding for research and clinical services to:</p>
<ul>
<li><p>deliver public health messaging to improve general knowledge about OCD and reduce the stigma so people feel more comfortable disclosing their worries</p></li>
<li><p>upskill and support health professionals to speed up diagnosis so people can receive targeted early intervention</p></li>
<li><p>support health-care professionals to offer evidence-based treatment for OCD, so more people can access these treatments</p></li>
<li><p>develop state and national service plans and clinical guidelines. For example, the Australian government funds the <a href="https://nedc.com.au/">National Eating Disorders Collaboration</a> to develop and implement a nationally consistent approach to preventing and treating eating disorders</p></li>
<li><p>research to discover new, and enhance existing, treatments. These include ones for people who don’t get better after “exposure and response prevention” therapy.</p></li>
</ul>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/seeing-a-psychologist-on-medicare-soon-youll-be-back-to-10-sessions-but-we-know-thats-not-often-enough-194338">Seeing a psychologist on Medicare? Soon you'll be back to 10 sessions. But we know that's not often enough</a>
</strong>
</em>
</p>
<hr>
<h2>What if I think I have OCD?</h2>
<p>The most common barrier to getting help is not knowing who to see or where to go. Start with your GP: tell them you think you might have OCD and ask to discuss treatment options. These might include therapy and/or medication and a referral to a psychologist or psychiatrist.</p>
<p>If you choose therapy, it’s important to find a clinician that offers specific and effective treatment for OCD. To help, we’ve started <a href="https://ocd.org.au/directory">a directory</a> of clinicians with a special interest in treating OCD. </p>
<p>You <a href="https://iocdf.org/ocd-finding-help/how-to-find-the-right-therapist/#:%7E:text=Tips%20for%20Finding%20the%20Right%20Therapist&text=Also%2C%20remember%20that%20some%20therapists,the%20phone%20or%20in%20person">can ask</a> any potential health professional if they offer “exposure and response prevention”. If they don’t, it’s a sign this isn’t their area of expertise. But you still can ask them if they know of a colleague who does. You might need to call around, so hang in there. Good treatment can be life changing.</p>
<p><em>If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.</em></p><img src="https://counter.theconversation.com/content/196651/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Iain Perkes is employed by UNSW, Sydney and the Sydney Children's Hospitals Network. He receives funding from Rotary Mental Health, the Mindgardens Neuroscience Network, National Health and Medical Research, the Tourette's Association of America, and the New South Wales Higher Education and Training Institute.</span></em></p><p class="fine-print"><em><span>David Cooper was funded by the UNSW Scientia PhD scholarship for his time on this article. David is also a clinical psychologist in private practice.</span></em></p><p class="fine-print"><em><span>Jessica Grisham receives funding from the Australian Research Council and Rotary Mental Health. </span></em></p><p class="fine-print"><em><span>Katelyn Dyason receives funding from Rotary Mental Health, and was funded by Mindgardens Neuroscience Network for her time on this article. </span></em></p><p class="fine-print"><em><span>Lara Farrell receives funding from Rotary Mental Health, National Health and Medical Research Council (NHMRC), and Medical Research Future Fund (MRFF). </span></em></p><p class="fine-print"><em><span>Lizzie Manning receives funding from National Health and Medical Research Council (NHMRC), Australian Research Council (ARC) and Tourette Association of America (TAA). </span></em></p>People can be reluctant to discuss symptoms with their doctor. When they do, their symptoms can be mistaken for other illnesses. Even when people are diagnosed, they don’t always get the right treatment.Iain Perkes, Senior Lecturer, child and adolescent psychiatry, UNSW SydneyDavid Cooper, PhD Candidate, UNSW SydneyJessica Grisham, Professor in Psychology, UNSW SydneyKatelyn Dyason, Project manager and psychologist, School of Psychiatry, UNSW SydneyLara Farrell, Associate Professor and Clinical Psychologist, Griffith UniversityLizzie Manning, Lecturer in Physiology and Neuroscience, University of NewcastleLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2014062023-03-24T09:34:57Z2023-03-24T09:34:57ZCOVID testing led to new techniques of disease diagnosis: progress mustn’t stop now<figure><img src="https://images.theconversation.com/files/514637/original/file-20230310-142-f88cb4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Covid-19 exposed critical shortcomings of existing diagnostic techniques</span> <span class="attribution"><span class="source">Michael Tewelde/Xinhua via Getty Images</span></span></figcaption></figure><p>In March 2020, weeks before the World Health Organization (WHO) declared COVID-19 a pandemic, its director-general Tedros Adhanom Ghebreyesus delivered <a href="https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---16-march-2020">a speech</a> in which he emphasised the importance of testing:</p>
<blockquote>
<p>… the most effective way to prevent infections and save lives is breaking the chains of transmission. And to do that, you must test and isolate. You cannot fight a fire blindfolded. And we cannot stop this pandemic if we don’t know who is infected. We have a simple message for all countries: test, test, test.</p>
</blockquote>
<p>The pandemic exposed critical shortcomings of existing diagnostic techniques. It revealed an urgent need for tests that are faster, simpler, cheaper and more scalable than existing methods, and just as accurate. </p>
<p>Three years on, the global face of diagnostics has changed. New techniques of disease diagnosis have been developed that can be applied to other emerging zoonotic pathogens such as “<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8367867/">disease X</a>” – a hypothetical infectious disease that has the potential to develop into a pandemic.</p>
<p>As a molecular scientist with a keen interest in veterinary disease diagnostics, I have closely followed developments in the diagnostic space since the start of the pandemic. These emerging technologies, together with conventional tests, have the potential to overcome bottlenecks in the current diagnostic procedures. By incorporating these tests into a country’s healthcare system, clinicians and policy makers are better equipped to practise precision medicine and to react to potential outbreaks.</p>
<h2>How the tests changed</h2>
<p>The first diagnostic tests for SARS-CoV-2 (the virus that causes COVID disease) used established molecular techniques such as reverse transcription polymerase reaction (RT-PCR). These techniques detect and identify organisms by amplifying their genetic material millions of times. Running the tests however requires trained technicians and expensive equipment.</p>
<p>As the pandemic became more severe, other ways to test for the virus had to be developed. Substances and compounds needed to effectively run diagnostic tests were in short supply and many countries did not have the kinds of sophisticated laboratories needed for the existing tests. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9178421/">Low- and middle-income countries</a> like those throughout the African continent had limited finances too and not enough trained specialists to handle the demand.</p>
<p>Isothermal amplification techniques helped to address the need. This is a simple process which rapidly and effectively amplifies DNA and RNA (genetic material) at constant temperature. </p>
<p>Immunological assays also helped. These tests can be used on-site or in the lab and are able to detect specific molecules such as antibodies and antigens. Antibodies are generated in a person’s body when a foreign molecule (antigen) invades the body.</p>
<p>These cost-effective tests provide rapid results and can be used on a big scale even where resources are scarce. The <a href="https://www.mdpi.com/2075-4418/11/2/182">major challenge</a> of these tests is that they are less accurate. Unlike molecular tests, which amplify the genetic material of the virus, immunological assays do not amplify their protein signal. This makes them <a href="https://www.science.org/content/article/coronavirus-antigen-tests-quick-and-cheap-too-often-wrong">less sensitive</a>. The risk is high that an infected person might incorrectly be told that they don’t have the virus.</p>
<p>The global diagnostic community realised it was time to look at methods that were as accurate as conventional molecular tests but could be used outside laboratories and on a large scale. </p>
<h2>Big strides</h2>
<p>Scientists needed a new generation of rapid, accurate, accessible and affordable diagnostic tests. The National Institutes of Health in the US set up the Rapid Acceleration of Diagnostics programme (<a href="https://www.nih.gov/research-training/medical-research-initiatives/radx/radx-programs">RADx</a>) in 2020 to fund innovative point-of-care and home-based tests and to speed up the development, validation and commercialisation of these tests.</p>
<p>One particularly interesting change in this space is the use of <a href="https://www.sciencedirect.com/science/article/pii/S1046202321000992">CRISPR</a>. The technology was previously known for its use in gene editing. But now it has revolutionised diagnostics with the launch of SHERLOCK and DETECTR, two innovative CRISPR-based kits used for the detection of SARS-CoV-2. These are particularly sensitive and specific and provide a visual colour readout using a commercially available paper dipstick, making them suitable for use as a point-of-care test. </p>
<p>The versatility of these techniques enables researches to apply the same principles to the detection of other infectious diseases too.</p>
<p>There have also been advances in using <a href="https://www.mdpi.com/1467-3045/44/10/325">biosensors</a>, <a href="https://luminostics.com/">nanotechnology</a>, <a href="https://nicoyalife.com/blog/nicoya-covid-19-diagnostic-test-2/?utm_campaign=COVID-19">smartphone-based tests</a> and <a href="https://www.nature.com/articles/s41591-020-1123-x">wearable technologies</a> for diagnostics.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-crispr-the-gene-editing-technology-that-won-the-chemistry-nobel-prize-147695">What is CRISPR, the gene editing technology that won the Chemistry Nobel prize?</a>
</strong>
</em>
</p>
<hr>
<p>Overall, in the past three years, the <a href="https://pubs.rsc.org/en/content/articlelanding/2023/lc/d2lc00662f">focus of disease testing</a> has moved from simple detecting and understanding to incorporating speed, efficiency and portability of the tests.</p>
<h2>Problems remain</h2>
<p>While there is a lot to celebrate in the diagnostic space, problems remain. There are barriers in developing and disseminating tests, particularly in poorer countries. <a href="https://www.finddx.org/wp-content/uploads/2022/12/20221210_rep_democratizing_testing_FV_EN.pdf">Fairer</a> access to quality testing and improved data sharing between countries is needed to eliminate the inequity in diagnostics.</p>
<p>The lack of resources to deliver a robust regulatory system in low- and middle-income countries also poses a serious challenge. Companies have less incentive to develop and commercialise products where there is weak regulation. Thus countries still depend on tests that are manufactured elsewhere. </p>
<p>As the world moves out of its pandemic response phase, it is likely that investment in diagnostics will fall. With a reduced need for tests, the economic return of investing in developing tests will diminish.</p>
<p>This is unfortunate as there are still so many healthcare challenges worldwide and unless disease surveillance is proactive, it won’t be possible to predict where the next pandemic might emerge from. The momentum created by the COVID pandemic offers an opportunity and should be used to build on the things that worked well in the diagnostic industry and to improve on the things that didn’t.</p><img src="https://counter.theconversation.com/content/201406/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Angelika Loots does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The pandemic spurred the diagnostics industry to consider aspects like scale, affordability, speed and portability of tests.Angelika Loots, Postdoctoral Fellow, University of PretoriaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2008592023-03-23T17:33:33Z2023-03-23T17:33:33ZPeople with faceblindness aren’t believed by their doctors – here’s what needs to change<figure><img src="https://images.theconversation.com/files/514716/original/file-20230310-16-u72iau.jpg?ixlib=rb-1.1.0&rect=30%2C30%2C6720%2C4473&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People with faceblindness may even struggle to recognise photos of themselves.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/portrait-woman-blurred-face-she-holding-2195079003">Stokkete/Shutterstock</a></span></figcaption></figure><p>Imagine what life would be like if you couldn’t recognise your own family and friends unless they told you who they were. Now imagine no one will believe you and that even your doctor dismisses you, saying everyone forgets names sometimes. </p>
<p>Two recent studies show this is a common experience for people with a brain disorder called “<a href="https://doi.org/10.1016/S0010-9452(76)80033-0">developmental prosopagnosia</a>” – or as it is more informally known, faceblindness. This type of prosopagnosia is lifelong, in contrast to “acquired prosopagnosia” which can develop after a brain injury. Sufferers struggle to recognise people who they know well and, in extreme cases, close family members and <a href="https://doi.org/10.1016/j.neuropsychologia.2015.07.009">even photographs of themselves</a>. </p>
<p>No one is sure why people develop this condition but <a href="https://doi.org/10.1016/S0010-9452(08)70502-1">it can run in families</a>, suggesting it might have a genetic basis. It is estimated to afflict <a href="https://journals.sagepub.com/doi/10.1080/17470218.2016.1167924">2-3% of the adult population</a>.</p>
<p><a href="https://link.springer.com/article/10.3758/s13428-022-02017-w">One of the studies</a>, published in December 2022, comes from <a href="https://www.edgehill.ac.uk/person/dr-edwin-burns/staff/">my lab at Edge Hill University</a>. Our results suggested that up to 85% of people with faceblindness would not get diagnosed if they tried traditional approaches. For example, if participants complained to their doctor that they were failing to recognise friends and family members, they were often told their face recognition skills were normal. This can have a terrible impact on people, leaving them confused, frustrated and upset. </p>
<p>Researchers at Harvard University <a href="https://doi.org/10.1016/j.cortex.2022.12.014">published a paper in February 2023</a> that came to the same conclusion: many people with faceblindness won’t get a diagnosis from their clinician using current medical assessments. The current procedure requires people to score worse than 97.5% of the general public on both of two computer-based tests. </p>
<h2>Drawing a blank</h2>
<p>The first of these tasks is a “famous faces” test, where patients have to identify celebrities from their photographs (for example, Brad Pitt or Bill Clinton). In the second task, patients are asked to memorise a series of unfamiliar faces, then pick them out from a larger group – similar to how you would identify a criminal suspect in a police line-up. </p>
<p>This is the most common approach used by clinicians and researchers across Europe, North America and Australasia. However, the Harvard research and that by my own lab found that many prosopagnosia cases would not meet the criteria currently required for a diagnosis.</p>
<p>Our <a href="https://link.springer.com/article/10.3758/s13428-022-02017-w">study</a> tested 61 people who reported daily difficulties recognising faces. Assessments were carried out online due to COVID-19 restrictions, and we found that 85% of participants would not have met the diagnosis threshold on the computer tests. The Harvard <a href="https://doi.org/10.1016/j.cortex.2022.12.014">study</a> suggested that roughly 60-70% of people who struggle to recollect faces may be denied a diagnosis.</p>
<figure class="align-center ">
<img alt="Young man in jeans and trainers sitting cross-legged on the ground in front of a grey wall holding up a blank tablet in front of his face" src="https://images.theconversation.com/files/516930/original/file-20230322-1082-9ekfni.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/516930/original/file-20230322-1082-9ekfni.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/516930/original/file-20230322-1082-9ekfni.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/516930/original/file-20230322-1082-9ekfni.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/516930/original/file-20230322-1082-9ekfni.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/516930/original/file-20230322-1082-9ekfni.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/516930/original/file-20230322-1082-9ekfni.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">How would you get by if you struggled to recognise anyone?</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-man-jeans-sneakers-sitting-cross-235549699">Amir Kaljikovic/Shutterstock</a></span>
</figcaption>
</figure>
<p>Why do people with prosopagnosia perform too well on medical tests to get a diagnosis? One reason may be because of day-to-day changes in their ability to focus – for example, did they have a coffee this morning, or a good night’s sleep? <a href="https://doi.org/10.1098/rsos.200884">Previous research</a> has shown prosopagnosics’ scores on face tests change from one testing session to the next. </p>
<p>Computer-based tests may also be missing something about how we recognise faces in person. In the real world, we see faces in three dimensions, and they are moving as someone walks towards us and speaks. The current tests only use still images in two dimensions. </p>
<h2>A different result</h2>
<p>So, how should we diagnose prosopagnosia instead? While the Harvard group and I agree that we need to be much more understanding towards people who believe they have the condition, we differ in our views on how this should be accomplished. </p>
<p>The Harvard lab proposes we should diagnose people with prosopagnosia if they score in the bottom 16% of the general population on the two face recognition tests. One problem with this approach is that it will still block many people who report trouble with faces from getting help. </p>
<p>I would argue we should be guided by the patient’s symptoms when deciding on a diagnosis. Symptoms can be assessed by asking people how strongly they agree with statements like “I often mistake people I have met before for strangers”. These are taken from a questionnaire called the <a href="https://doi.org/10.1098/rsos.140343">prosopagnosia index</a>, first developed by a British research group in 2015. </p>
<p>This approach is used for other psychological conditions such as depression and post-traumatic stress disorder. Only with this method can we understand the range of the prosopagnosia spectrum, and avoid unnecessary suffering that comes with a lack of diagnosis. </p>
<p>The prosopagnosia index only takes a couple of minutes to administer, while computer based tests can take up to an hour. Diagnosing people more rapidly gives doctors more time to discuss options with their patients, such as <a href="https://doi.org/10.1093/brain/awu062">computer training with faces</a> and <a href="https://doi.org/10.1080/09602011.2019.1623824">coping mechanisms</a>. The latter includes telling friends and colleagues about your condition, and requesting they introduce themselves each time you meet. </p>
<p>Research in this area is ongoing so if you, or someone you know, thinks they might have prosopagnosia (either acquired or developmental) and would like to be tested, or you have failed to get a diagnosis in the past from a clinician, <a href="https://edgehillpsychology.eu.qualtrics.com/jfe/form/SV_4NoPGDFC9FJt2K2">please consider taking part</a>.</p>
<p>For those who might still be sceptical, I should add: faceblindness is a real disorder. People with this condition have atypical neural responses when they view faces. This suggests their brains are not functioning as they should be when they visualise faces.</p>
<p>If you happen to meet someone with faceblindness – and the chances are very high, given that one in 30 may have the condition – please be understanding. Give them cues as to who you are and where you met them. A little patience can make all the difference.</p><img src="https://counter.theconversation.com/content/200859/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Edwin Burns does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Research shows most people who can’t even recognise their family and friends won’t get the diagnosis needed to help them.Edwin Burns, Senior Lecturer in Psychology, Edge Hill UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2011682023-03-07T06:11:21Z2023-03-07T06:11:21ZBlack Inc. has stumbled with its anthology of neurodivergent writing. The term is not a diagnosis – it is part of a political movement<figure><img src="https://images.theconversation.com/files/513885/original/file-20230307-18-atzhip.jpg?ixlib=rb-1.1.0&rect=8%2C8%2C2771%2C1842&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Autistic actor Chloe Hayden has worked to transcend the limits of a world not designed for neurodivergent people.</span> <span class="attribution"><span class="source">Feros Care</span></span></figcaption></figure><p>I am blind and autistic. Like many people who grew up experiencing the world differently to mainstream Australians, I was thrilled last Thursday to read Black Inc.’s <a href="https://www.blackincbooks.com.au/news/growing-neurodivergent-australia-call-submissions">announcement</a> of a new anthology, to be edited by <a href="https://en.wikipedia.org/wiki/Osher_G%C3%BCnsberg">Osher Gunsberg</a>: “Growing up Neurodivergent in Australia: Call for submissions.” </p>
<p>Finally, I thought, after 25 years of the neurodiversity movement, founded by Australian sociologist Judy Singer, its birth country would have an anthology representing the range of our experiences.</p>
<p>But I was dismayed to read, in the first paragraph of the callout, that contributors were required to “have been diagnosed as neurodivergent”. This might sound like a reasonable request, but it fails to account for what the neurodivergent community is, what diagnosis is, and what has been expected of previous contributors to the <a href="https://www.blackincbooks.com.au/series/growing-series">Growing Up</a> series.</p>
<h2>Why diagnosis is a problem</h2>
<p>Neurodivergent people, many of them autistic, questioned the framing and language of Black Inc.’s callout, and asked it to reconsider the requirement for a diagnosis. The publisher <a href="https://twitter.com/BlackIncBooks/status/1631118113189273601">replied</a>: </p>
<blockquote>
<p>In the interests of protecting those who are yet to seek intervention, and to be ethically responsible in how we present this issue – we are only inviting submissions from people with a medical diagnosis.</p>
</blockquote>
<p>There was an outcry in response. Radio personality <a href="https://theconversation.com/real-life-autism-disclosures-are-complex-and-reactions-can-range-from-dismissal-to-celebration-199869">Em Rusciano</a>, diagnosed with ADHD and autism, wrote on Twitter:</p>
<blockquote>
<p>Getting diagnosed is nearly impossible atm. Most of us grew up ND [neurodivergent] in Australia without even realising we were until we figure it out as adults. Self diagnosis is totally valid… Do better.</p>
</blockquote>
<p>Two days later, Black Inc. <a href="https://www.blackincbooks.com.au/news/statement-regarding-growing-neurodivergent-australia">published a statement</a> apologising for the pain it had caused, but continuing to use the same framing and language regarding neurodiversity, and not changing its position on diagnosis.</p>
<p>The project is now on hold, while the publisher is “considering all the issues”.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1631944497394483201"}"></div></p>
<p>Black Inc.’s shift to requiring proof of identity should be of concern to all writers. We write to tell our stories of various identities, and when we submit them under nonfiction, we are labelling them as our truth. A submission process that requires proof of identity demands evidence that often does not or cannot exist. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/real-life-autism-disclosures-are-complex-and-reactions-can-range-from-dismissal-to-celebration-199869">Real-life autism disclosures are complex – and reactions can range from dismissal to celebration</a>
</strong>
</em>
</p>
<hr>
<h2>‘A tool of inclusion’</h2>
<p>Of course, there is no specific “neurodivergent” diagnosis, although neurodivergence covers a range of conditions that can be diagnosed, including <a href="https://theconversation.com/its-25-years-since-we-redefined-autism-heres-what-weve-learnt-125053">autism</a>, <a href="https://theconversation.com/i-think-i-have-adhd-how-do-i-get-a-diagnosis-what-might-it-mean-for-me-190239">ADHD</a>, <a href="https://theconversation.com/what-is-bipolar-disorder-the-condition-kanye-west-lives-with-143198">bipolar</a>, <a href="https://theconversation.com/epilepsy-sorting-the-myths-from-the-facts-of-a-common-disorder-47276">epilepsy</a>, <a href="https://theconversation.com/you-cant-be-a-little-bit-ocd-but-your-everyday-obsessions-can-help-end-the-conditions-stigma-49265">obsessive-compulsive disorder</a> (OCD), <a href="https://theconversation.com/what-causes-schizophrenia-what-we-know-dont-know-and-suspect-102651">schizophrenia</a> and <a href="https://theconversation.com/what-is-tourette-syndrome-the-condition-lewis-capaldi-lives-with-200630">Tourette syndrome</a>.</p>
<p>But the neurodiversity movement, which embraces a social model of disability over the medical model, is specifically against requiring a neurodivergent person to have a diagnosis of any kind. </p>
<p>Kassiane Asasumasu, who <a href="https://www.psychologytoday.com/au/blog/neurodiverse-age/202108/negotiating-the-neurodiversity-concept">coined the term</a> “neurodivergent”, <a href="https://sherlocksflataffect.tumblr.com/post/121295972384/psa-from-the-actual-coiner-of-neurodivergent">has written</a>: </p>
<blockquote>
<p>It is not another damn tool of exclusion. It is specifically a tool of inclusion. </p>
</blockquote>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/513898/original/file-20230307-24-asvvv5.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman with glasses in a black tank-top and a necklace, with a fringe and shoulder-length hair" src="https://images.theconversation.com/files/513898/original/file-20230307-24-asvvv5.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/513898/original/file-20230307-24-asvvv5.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/513898/original/file-20230307-24-asvvv5.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/513898/original/file-20230307-24-asvvv5.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/513898/original/file-20230307-24-asvvv5.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/513898/original/file-20230307-24-asvvv5.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/513898/original/file-20230307-24-asvvv5.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Kassiane Asasumasu, who coined ‘neurodivergence’, says: ‘It is not another damn tool of exclusion. It is specifically a tool of inclusion.’</span>
<span class="attribution"><span class="source">Commission for People with disAbilities 2017 Inclusion Jubilee</span></span>
</figcaption>
</figure>
<p>A diagnosis requirement would make many neurodivergent people ineligible to submit their story. Diagnoses are prohibitively expensive for many: current estimates for the cost of an <a href="https://theconversation.com/wondering-about-adhd-autism-and-your-childs-development-what-to-know-about-getting-a-neurodevelopmental-assessment-197528">autism diagnosis</a> in Australia, for instance, range from $1,000 to $8,000. </p>
<p>And while things are changing, the diagnostic tools for conditions like autism and ADHD have often failed to recognise those who fall outside the long-typical presentation of an otherwise non-disabled white male child.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/les-murray-said-his-autism-shaped-his-poetry-his-late-poems-offer-insights-into-his-creative-process-188212">Les Murray said his autism shaped his poetry – his late poems offer insights into his creative process</a>
</strong>
</em>
</p>
<hr>
<h2>What is neurodiversity?</h2>
<p>The word “<a href="https://www.webmd.com/add-adhd/features/what-is-neurodiversity">neurodiversity</a>” was born in the 1998 <a href="https://www.amazon.com.au/NeuroDiversity-Birth-Idea-Judy-Singer-ebook/dp/B01HY0QTEE">sociology Honours thesis</a> of Judy Singer, a student at University of Technology Sydney. </p>
<p>She was drawn to sociology after learning about the history of classifying human differences according to how compatible or otherwise they might be with industrial production, and how the medical profession gained its power through being the arbiter of who was or was not productive. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/513896/original/file-20230307-14-20m6qx.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A white woman with a silver-blonde bob and a black T-shirt" src="https://images.theconversation.com/files/513896/original/file-20230307-14-20m6qx.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/513896/original/file-20230307-14-20m6qx.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/513896/original/file-20230307-14-20m6qx.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/513896/original/file-20230307-14-20m6qx.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/513896/original/file-20230307-14-20m6qx.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/513896/original/file-20230307-14-20m6qx.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/513896/original/file-20230307-14-20m6qx.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Autistic Australian sociologist Judy Singer coined the concept of ‘neurodiversity’ in 1998.</span>
<span class="attribution"><span class="source">Autism Awareness Australia</span></span>
</figcaption>
</figure>
<p>She learned of a group of physically impaired UK activists who challenged this medical model with a social model of disability. The social model argues that the way an environment is constructed privileges those who are classified as “normal”, while disabling those classified as “abnormal”. </p>
<p>For example, stairs are more common than ramps or elevators because more people walk than use wheelchairs – so wheelchair users are disabled in terms of accessing buildings with stairs because they are not built to accommodate them, but to accommodate people who walk. Singer discovered the social model was foundational to the academic discipline of disability studies, and enrolled in this degree to learn more.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/513900/original/file-20230307-30-ocsgvb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A short-haired wheelchair user impressively navigates a flight of stairs." src="https://images.theconversation.com/files/513900/original/file-20230307-30-ocsgvb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/513900/original/file-20230307-30-ocsgvb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/513900/original/file-20230307-30-ocsgvb.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/513900/original/file-20230307-30-ocsgvb.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/513900/original/file-20230307-30-ocsgvb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/513900/original/file-20230307-30-ocsgvb.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/513900/original/file-20230307-30-ocsgvb.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Wheelchair users are disabled in terms of accessing buildings with stairs because they’re not built to accomodate them.</span>
<span class="attribution"><span class="source">Nadia Doloh/Pexels</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>At the same time, Singer’s baby daughter was developing differently to other children her age. Singer was searching for an explanation when she read about autistic scientist and author <a href="https://theconversation.com/temple-grandin-the-effect-mr-spock-had-on-me-38472">Temple Grandin</a>, and recognised her daughter’s characteristics. This led Singer to realise she and her mother were also autistic. There were few people in Australia she could discuss her situation with. </p>
<p>On the internet, which was just then beginning to expand beyond university walls, she discovered a world of people like her. All of them had stumbled through a maze of misdiagnosis and social isolation to finally find each other. So often, they’d been told they and their experiences of the world were “weird” and wrong. Accepting each other’s self-descriptions was key to this community.</p>
<p>Together they designed a future that did not exclude them from society. They created the term “neurotypical” to refer to those whose brains function in typical ways, leading them to instinctively communicate in ways society classified as normal. They referred to themselves as “autistics and cousins”.</p>
<p>Recognising the importance of this moment in history, Singer wanted to document the movement and its implications. To her, the most important of these implications was that humanity was constituted by a range of neurotypes, all of them vital for its survival. </p>
<p>Understanding humans as one element of Earth’s biodiversity, she coined the term “neurodiversity” to refer to this variety of minds. Neurodiversity is not simply a characteristic of humankind, she argued, but essential to its survival.</p>
<h2>‘Truly revolutionary’</h2>
<p>As the term “neurodiversity” became known beyond their online community, it was clear a similarly compact way to refer to “autistics and cousins” was needed. So Hapa and Asian American autistic activist Kassiane Asasumasu invented the term “neurodivergent”, to refer to people whose brains diverge from the typical.</p>
<p>Singer’s thesis has been truly revolutionary for the neurodivergent community. It has positively transformed the way many neurodivergent people understand themselves: allowing them to find their kin, to understand their worth, and to live the kind of lives the medical model - which framed their characteristics in terms of deficits - told them was impossible.</p>
<p>As a result of neurodivergent people who have concentrated on their strengths while working to transcend the limits of a world not designed for them, Australia is known for <a href="https://theconversation.com/hannah-gadsby-navigates-the-mirror-maze-of-trauma-as-an-autistic-gender-queer-comedian-176010">Hannah Gadsby</a>’s groundbreaking comedy, <a href="https://theconversation.com/there-is-great-strength-in-vulnerability-grace-tames-surprising-irreverent-memoir-has-a-message-of-hope-191074">Grace Tame</a>’s work to support survivors of sexual abuse, and <a href="https://theconversation.com/teenage-misfits-messy-emotions-and-joyous-discussions-on-consent-heartbreak-high-is-a-bright-new-piece-of-television-188733">Chloe Hayden</a>’s acting.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/513901/original/file-20230307-14-b4peij.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/513901/original/file-20230307-14-b4peij.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/513901/original/file-20230307-14-b4peij.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=386&fit=crop&dpr=1 600w, https://images.theconversation.com/files/513901/original/file-20230307-14-b4peij.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=386&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/513901/original/file-20230307-14-b4peij.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=386&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/513901/original/file-20230307-14-b4peij.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=485&fit=crop&dpr=1 754w, https://images.theconversation.com/files/513901/original/file-20230307-14-b4peij.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=485&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/513901/original/file-20230307-14-b4peij.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=485&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Neurodivergent people like autistic comedian Hannah Gadsby have worked to transcend the limits of a world not designed for them.</span>
<span class="attribution"><span class="source">Allen & Unwin</span></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/hannah-gadsby-navigates-the-mirror-maze-of-trauma-as-an-autistic-gender-queer-comedian-176010">Hannah Gadsby navigates the mirror maze of trauma as an autistic, gender queer comedian</a>
</strong>
</em>
</p>
<hr>
<h2>Why diagnosis isn’t simple – or available to all</h2>
<p>“Neurodivergent” is a proudly nonscientific identifier. The neurodivergent community welcomes people who experience the world atypically – and does not base membership on the medical labels people do or do not have. </p>
<p>Therefore, to require a neurodivergent person to have a diagnosis directly contradicts the community’s foundations. It also ignores the many difficulties and complications involved in seeking a diagnosis.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1631288219944865795"}"></div></p>
<p>Diagnosis is of course necessary to be prescribed medication, or when applying for <a href="https://theconversation.com/understanding-the-ndis-how-does-the-scheme-work-and-am-i-eligible-for-funding-58726">NDIS assistance</a>. However, if you need medication or NDIS assistance, you will not be given a diagnosis of “neurodivergent”. You will be given one or more medical labels, such as autism, dyslexia, epilepsy or Tourette syndrome. </p>
<p>These medical labels are not as conclusive as they may seem. There is not a blood test for autism. People can be diagnosed with epilepsy even with a normal EEG and MRI. Many neurological medical conditions are diagnosed entirely on the basis of questionnaires and self-reported medical history.</p>
<p>And what each medical label encompasses changes over time. This is why the <a href="https://theconversation.com/explainer-what-is-the-dsm-and-how-are-mental-disorders-diagnosed-9568">Diagnostic and Statistical Manual</a> (DSM) is continually debated and regularly updated. </p>
<p>For example, autism was originally described as a form of childhood schizophrenia, and only became its own diagnosis in 1980. In 1994, autism was divided into so-called low-functioning “autism” and so-called high-functioning “Asperger’s Syndrome”. In 2013, <a href="https://theconversation.com/redefining-autism-in-the-dsm-5-6385">Asperger’s Syndrome was retired</a> as a term, and folded back into “autism”. </p>
<p>An increasing number of conditions, including autism and ADHD, have been revealed to be based on disablist, racist and sexist stereotypes, leading to misdiagnosis and underdiagnosis.</p>
<p>Seeking a diagnosis engulfs your life. This is not hyperbole. It is time-consuming, traumatising, exhausting and expensive. It involves waiting lists, multiple assessments, multiple specialists, and a lot of travel. And, particularly if you are from one or more of the groups that are frequently misdiagnosed and underdiagnosed, such as women or First Nations people, you may have to endure it several times over. The only shortcut through this process in Australia is wealth.</p>
<h2>Proof of identity</h2>
<p>When neurodivergent people began to explain to Black Inc. why their requirement for diagnosis was unacceptable, disabled activist Carly Findlay was quick to support us. When she was editor of <a href="https://www.blackincbooks.com.au/books/growing-disabled-australia">Growing up Disabled in Australia</a>, and when she contributed to <a href="https://www.blackincbooks.com.au/books/growing-african-australia">Growing up African in Australia</a>, proof of identity was not required.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1631281930435190786"}"></div></p>
<p>Where it does exist, proof of identity will always be vulnerable to accusations of inadequacy. And when it puts vulnerable people at risk when their private medical information is stored by organisations and companies who might not be equipped to manage it safely.</p>
<p>Many neurodivergent people avoid diagnostic labels so as to avoid discrimination. This happens to diagnosed people in many aspects of their lives, including getting an education, getting a job, accessing healthcare and health insurance, signing contracts, and moving to or from Australia.</p>
<p>An absence of proof of course makes it possible for situations such as the 1995 Miles Franklin award, where <a href="https://www.smh.com.au/culture/books/from-the-archives-1995-writer-demidenko-revealed-to-be-helen-darville-20200813-p55ldc.html">Helen Demidenko faked a Ukrainian identity</a>, to occur. But this is rare. I do not want to minimise the pain one fake causes a whole community. I want to argue that a whole community should not be punished because of the rare fake.</p>
<p>Nevertheless, Black Inc.’s bad example has been a reminder both of the strengths of the neurodivergent community, and the allies who respect our history and culture. This has resulted in a burst of creativity, including three neurodivergent anthologies in the works that I know of – all committed to the principles of neurodiversity.</p><img src="https://counter.theconversation.com/content/201168/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Amanda Tink does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>After an outcry on social media over its requirement that writers provide a medical diagnosis, Black Inc. has put on hold a planned anthology: Growing up Neurodivergent in Australia.Amanda Tink, PhD Candidate, Western Sydney UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2001752023-03-06T20:03:36Z2023-03-06T20:03:36ZProstate cancer test: is it time to ditch the digital rectal examination?<p>The finger-up-the-bottom examination for prostate cancer has been drawn into question. An international panel of experts recently suggested that so-called digital rectal examination for “active surveillance” should be <a href="https://euoncology.europeanurology.com/article/S2588-9311(23)00002-0/fulltext">replaced by MRI scans</a>.</p>
<p>This news may be celebrated as the overcoming of an intrusive medical examination by the forward march of technology, but what exactly is a digital rectal examination (DRE) and what are the implications of replacing it?</p>
<p>The <a href="https://www.nhs.uk/conditions/rectal-examination/">DRE</a> involves a doctor examining a patient’s rectal wall by inserting a finger into the bottom. This gives doctors access to <a href="https://www.mayoclinic.org/diseases-conditions/prostate-cancer/multimedia/digital-rectal-exam/img-20006434">the prostate gland</a>, helping them find signs of cancer. Before the prostate-specific antigen (PSA) test (from drawn blood) was introduced in 1986, the DRE was the <a href="https://emedicine.medscape.com/article/1948001-overview#:%7E:text=Before%20the%20advent%20of%20serum,relation%20to%20all%20surrounding%20structures.">only method</a> of screening men for prostate cancer.</p>
<p>The DRE can also be used to detect other cancers, such as rectal cancer and anal cancer. It can be used to check for impacted stool in people with constipation, and, under certain circumstances which won’t be discussed further, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3577617/">foreign bodies</a>. </p>
<p>It is also used in women to check for cancer, including the spread of ovarian cancer.</p>
<p>Done correctly, it shouldn’t be too uncomfortable. And privacy and good communication can go a long way in overcoming embarrassment. </p>
<p>All medical students are taught to do it and for generations have been told that when examining patients: “If you don’t put your finger in it, you may put your foot in it.”</p>
<figure class="align-right ">
<img alt="A man having his prostate gland examined." src="https://images.theconversation.com/files/512709/original/file-20230228-26-d4db58.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/512709/original/file-20230228-26-d4db58.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=598&fit=crop&dpr=1 600w, https://images.theconversation.com/files/512709/original/file-20230228-26-d4db58.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=598&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/512709/original/file-20230228-26-d4db58.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=598&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/512709/original/file-20230228-26-d4db58.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=751&fit=crop&dpr=1 754w, https://images.theconversation.com/files/512709/original/file-20230228-26-d4db58.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=751&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/512709/original/file-20230228-26-d4db58.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=751&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A man having his prostate gland examined.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/w/index.php?curid=5581404">National Cancer Institute/Wikimedia</a></span>
</figcaption>
</figure>
<p>The walnut-sized prostate gland sits in the pelvis, surrounding the urethra as it leaves the bladder. Rather conveniently, it lies next to the rectum and is easily felt by the examining finger. </p>
<p>If it is inflamed, as in cases of <a href="https://www.nhs.uk/conditions/prostatitis/">prostatitis</a>, it will be tender. And in <a href="https://www.nhs.uk/conditions/prostate-enlargement/">benign prostate enlargement</a>, which happens in middle age and causes the urinary stream to slow, the prostate gland will feel enlarged. </p>
<p>In cases of cancer of the prostate, the surface may be irregular and the texture firm to the touch. However, it is quite common for <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5985061/">prostate cancer to be missed in the early stages of the disease</a>. </p>
<h2>The gloves are off</h2>
<p>In the UK medical school system, great emphasis is quite rightly placed on learning good clinical skills. Over-reliance on technology is seen as potentially wasteful of scarce resources, and it would seem that patients like to think of their doctors as skilled diagnosticians. But there are times when technology is more accurate at finding disease – especially in its early stages. </p>
<p>Magnetic resonance imaging (MRI) provides detailed pictures of bodily structures. Unlike X-rays and CT scanning, it does not rely on ionising radiation (which is linked to an increased risk of cancer) and is thought to be safe. It is good at picking up early prostate cancer and for “surveillance” (monitoring the disease). </p>
<p>But <a href="https://www.researchgate.net/profile/David-Young-8/publication/353123295_MRICost/links/60e8549cb8c0d5588ce61127/MRICost.pdf">MRI scans are expensive</a> and the machines are bulky, power-hungry and usually confined to hospitals. This limits their use.</p>
<p>There is a blood test, the previously mentioned PSA test, which is used as a marker for diseases of the prostate, but it is not specific for cancer. When used in combination with the DRE, it <a href="https://pubmed.ncbi.nlm.nih.gov/7512659/">helps to detect cases</a>. But PSA levels become elevated after a DRE which makes the timing of testing awkward. It means blood needs to be drawn on a separate visit.</p>
<p>So what is the role of DRE in diagnosing prostate cancer? I believe it still has a place. Prostate cancer spreads easily to the bones, and it is not uncommon for undiagnosed prostate cancer to manifest as back pain when it has spread to the vertebrae. If this is suspected, then positive findings on rectal examination may lead to a more timely diagnosis and fewer delays in getting the correct treatment.</p>
<h2>Gloves on again?</h2>
<p>DRE performs rather better for rectal cancer. If the tumour is in a site accessible to the examiner’s finger, <a href="https://pubmed.ncbi.nlm.nih.gov/17868406/">then up to 76% can be detected</a>.</p>
<p>For constipation, the finding of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8568520/">impacted stool in the rectum</a> can save the expense and radiation exposure of modern investigations, which have done away with X-rays of the abdomen in favour of <a href="https://www.health.harvard.edu/cancer/radiation-risk-from-medical-imaging">radiation-intensive</a> CT scans.</p>
<p>Has the rectal examination had its day? I think not. It’s a cheap examination that yields useful information when used and interpreted correctly.</p><img src="https://counter.theconversation.com/content/200175/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Stephen Hughes does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A panel of experts has deemed the digital rectal examination to be inferior to MRI in monitoring prostate cancer in men.Stephen Hughes, Senior Lecturer in Medicine, Anglia Ruskin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1969432023-02-22T19:04:16Z2023-02-22T19:04:16ZGastro or endometriosis? How your GP discusses uncertainty can harm your health<figure><img src="https://images.theconversation.com/files/507527/original/file-20230201-23-1odtda.jpg?ixlib=rb-1.1.0&rect=2%2C5%2C1914%2C1270&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.pexels.com/photo/woman-suffering-from-a-stomach-pain-lying-down-on-couch-5938365/">Sora Shimazaki/Pexels</a></span></figcaption></figure><p>You wake with stomach pain that worsens during the day and decide to see your doctor. You describe your symptoms and your doctor examines you. Then the doctor says, “From what I hear, I think you could just have a stomach bug. Rest and come back in three days.”</p>
<p>This might be a less definitive answer than you’re after. But doctors can’t always be sure of a diagnosis straight away. As <a href="https://link.springer.com/article/10.1007/s11606-022-07768-y">my review</a> shows, doctors use various ways of communicating such uncertainty.</p>
<p>Sometimes there is a mismatch between what doctors say when they’re uncertain and how patients interpret what they say, which can have harmful consequences.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/missed-something-the-doctor-said-recording-your-appointments-gives-you-a-chance-to-go-back-112302">Missed something the doctor said? Recording your appointments gives you a chance to go back</a>
</strong>
</em>
</p>
<hr>
<h2>Why does uncertainty matter?</h2>
<p>Doctors <a href="https://link.springer.com/article/10.1007/s11606-017-4164-1">cannot always explain</a> what your health problem is or what caused it. Such diagnostic uncertainty is a normal and <a href="https://doi.org/10.1001/jama.2022.2141">ever-present part</a> of the processes leading to a diagnosis. For instance, doctors often have to rule out other possible diagnoses before settling on one that’s most likely.</p>
<p>While doctors ultimately get the diagnosis right <a href="http://dx.doi.org/10.1136/bmjqs-2012-001615">in 85-90%</a> of cases, diagnostic uncertainty can lead to diagnostic delays and is a huge contributor to harmful or even deadly misdiagnoses.</p>
<p>Every year, <a href="https://www.mja.com.au/system/files/issues/213_07/mja250771.pdf">an estimated</a> 21,000 people are seriously harmed and 2,000-4,000 people die in Australia because their diagnosis was delayed, missed or wrong. That could be because the wrong treatment was provided and caused harm, or the right treatment was not started or given after the condition had already considerably progressed. More than <a href="https://www.mja.com.au/system/files/issues/213_07/mja250771.pdf">80% of diagnostic errors</a> could have been prevented. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C1000%2C663&q=45&auto=format&w=1000&fit=clip"><img alt="Doctor with stethoscope around neck talking to patient" src="https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C1000%2C663&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Diagnostic uncertainty is a huge contributor to harmful or even deadly misdiagnoses.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/crop-close-woman-doctor-prescribe-treatment-1930965026">Shutterstock</a></span>
</figcaption>
</figure>
<p>Three medical conditions – infections, cancer and major vascular events (such as strokes or heart attacks) – are the so-called “<a href="https://doi.org/10.1515/dx-2019-0019">Big Three</a>” and cause devastating harm if misdiagnosed.</p>
<p>In my review, the top three symptoms – fever, chest pain and abdominal pain – were most often linked to diagnostic uncertainty. In other words, most of us will have had at least one of these very common symptoms and thus been at risk of uncertainty and misdiagnosis.</p>
<p>Some groups are less likely to be diagnosed correctly or without inappropriate delay than others, leading to <a href="https://doi.org/10.1001/jama.2022.7252">diagnostic inequities</a>. This may be the case for <a href="https://www.liebertpub.com/doi/10.1089/whr.2022.0052">women</a>, and other groups marginalised because of their <a href="https://onlinelibrary.wiley.com/doi/10.1111/acem.14142">race or ethnicity</a>, <a href="https://doi.org/10.1016/j.socscimed.2020.113609">sexual orientation or gender identity</a>, or <a href="https://doi.org/10.1001/jama.2022.7252">language proficiency</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-your-doctor-describes-your-medical-condition-can-encourage-you-to-say-yes-to-surgery-when-there-are-other-options-157958">How your doctor describes your medical condition can encourage you to say 'yes' to surgery when there are other options</a>
</strong>
</em>
</p>
<hr>
<h2>How often do you hear ‘I don’t know’?</h2>
<p>My research showed doctors often make diagnostic uncertainty clear to patients by using explicit phrases such as: “I don’t know.”</p>
<p>But doctors can also keep quiet about any uncertainty or signal they’re uncertain in more subtle ways.</p>
<p>When doctors believe patients prefer clear answers, they may only share the most likely diagnosis. They say: “It’s a stomach bug” but leave out, “it could also be constipation, appendicitis or endometriosis”. </p>
<p>Patients leave thinking the doctor is confident about the (potentially correct or incorrect) diagnosis, and remain uninformed about possible other causes. </p>
<p>This can be especially frustrating for patients with chronic symptoms, where such knowledge gaps can lead to lengthy diagnostic delays, as reported for <a href="https://doi.org/10.1016/j.ajog.2018.12.039">endometriosis</a>.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1064608335217942528"}"></div></p>
<p>Subtle ways of communicating uncertainty include hedging with certain words (could, maybe) or using introductory phrases (my guess, I think). Other implicit ways are consulting a colleague or the Internet, or making follow-up appointments.</p>
<p>If patients hear “I think this could be a stomach bug” they may think there’s some uncertainty. But when they hear “come back in three days” the uncertainty may not be so obvious.</p>
<p>Sharing uncertainty implicitly (rather than more directly), can leave patients unaware of new symptoms signalling a dangerous change in their condition.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/1-in-10-women-are-affected-by-endometriosis-so-why-does-it-take-so-long-to-diagnose-141803">1 in 10 women are affected by endometriosis. So why does it take so long to diagnose?</a>
</strong>
</em>
</p>
<hr>
<h2>What can you do about it?</h2>
<p><strong>1. Ask about uncertainty</strong></p>
<p>Ask your doctor to share any <a href="http://dx.doi.org/10.1515/dx-2021-0086">uncertainty and other diagnostic reasoning</a>. Ask about alternative diagnoses they’re considering. If you’re armed with such knowledge, you can better engage in your care, for example asking for a review when your symptoms worsen.</p>
<p><strong>2. Manage expectations together</strong></p>
<p>Making a diagnosis can be an evolving process rather than a single event. So ask your doctor to outline the diagnostic process to help manage any <a href="http://dx.doi.org/10.1136/ebm.14.3.66">mismatched expectations</a> about how long it might take, or what might be involved, to reach a diagnosis. Some conditions need time for symptoms to evolve, or further tests to exclude or confirm.</p>
<p><strong>3. Book a long appointment</strong></p>
<p>When we feel sick, we might get anxious or find we experience heightened levels of fear and other emotions. When we hear our doctor isn’t certain about what’s causing our symptoms, we may get even more anxious or fearful.</p>
<p>In these cases, it can take time to discuss uncertainty and to learn about our options. So book a long appointment to give your doctor enough time to explain and for you to ask questions. If you feel you’d like some support, you can ask a close friend or family member to attend the appointment with you and to take notes for you.</p>
<hr>
<p><em>I acknowledge the contribution of patient advocate Jen Morris and GP Marisa Magiros to this article. The systematic review mentioned was co-authored by Maria Dahm, William Cattanach, Maureen Williams, Jocelyne Basseal, Kelly Gleason and Carmel Crock</em>.</p><img src="https://counter.theconversation.com/content/196943/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Maria R. Dahm receives funding from the Australian Research Council and the Society to Improve Diagnosis in Medicine. She is affiliated with the Australian New Zealand affiliate of the Society to Improve Diagnosis in Medicine. </span></em></p>Doctors don’t always tell you they’re unsure what’s behind common symptoms, such as a stomach ache. And that can have serious effects.Maria R. Dahm, ARC DECRA and Senior Research Fellow in Health Communication, Australian National UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1971272023-01-19T09:18:32Z2023-01-19T09:18:32ZEmerging from a coma: response to language can help assess states of consciousness<figure><img src="https://images.theconversation.com/files/503430/original/file-20230106-10033-7jgnj.jpg?ixlib=rb-1.1.0&rect=0%2C22%2C5120%2C2851&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An EEG and MRI allow physicians to follow the activity of the cerebral regions linked to language. This enables them to measure the reactions of a patient in a state of minimal consciousness to various commands.</span> <span class="attribution"><span class="source">Gorodenkoff/Shutterstock</span></span></figcaption></figure><p>A man – for the sake of this exercise, let’s call him “Paul” - has a heart attack and his brain is starved of oxygen. After several resuscitations and a week in a coma, he finally opens his eyes. However, he doesn’t always appear to be present. Doctors say he is still unconscious, in an “unresponsive state” – the patient’s eyes are open, but he doesn’t move his hand when asked. For families in such situations, the question is always the same: will their loved one become conscious again?</p>
<p>Recent advances in intensive-care medicine have allowed many people with severe brain injuries to “come back to life”. However, from a seemingly inert state to full wakefulness, there is a <a href="https://theconversation.com/etat-vegetatif-eveil-non-repondant-comment-evalue-t-on-le-niveau-de-conscience-des-patients-dans-le-coma-152046">wide range of different states of consciousness</a> that neuroscientists are working to better define. </p>
<p>After a coma episode (where the eyes remain closed) lasting between one hour and four weeks, there are normally several states of recovery until “emergence”, but some intermediate states of consciousness may persist and even become chronic:</p>
<ul>
<li><p><strong>Unresponsive wakefulness syndrome</strong>: the patients open their eyes but show no signs of consciousness. (This was previously called a “vegetative state”, but was renamed in 2010 to <a href="https://pubmed.ncbi.nlm.nih.gov/21040571/">better describe the symptoms</a>.)</p></li>
<li><p><strong>Minimally conscious state “minus”</strong>: recovery of some signs of consciousness such as visual pursuit/fixation, or localization of painful stimulation.</p></li>
<li><p><strong>Minimally conscious state “plus”</strong>: reappearance of signs of language awareness – response to verbal commands, production of words, attempts to communicate.</p></li>
<li><p><strong>Emergence from the minimally conscious state</strong>: as soon as the patient is able to communicate using a yes/no code or to use everyday objects.</p></li>
</ul>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/505311/original/file-20230119-23-pg8jys.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Each state is distinguished by different abilities: eye opening, answering questions, etc" src="https://images.theconversation.com/files/505311/original/file-20230119-23-pg8jys.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/505311/original/file-20230119-23-pg8jys.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=190&fit=crop&dpr=1 600w, https://images.theconversation.com/files/505311/original/file-20230119-23-pg8jys.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=190&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/505311/original/file-20230119-23-pg8jys.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=190&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/505311/original/file-20230119-23-pg8jys.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=239&fit=crop&dpr=1 754w, https://images.theconversation.com/files/505311/original/file-20230119-23-pg8jys.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=239&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/505311/original/file-20230119-23-pg8jys.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=239&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Diagnosis of the state of consciousness following brain damage: coma, unresponsive wakefulness syndrome (vegetative state), minimally conscious state minus, minimally conscious state plus and emergence.</span>
<span class="attribution"><span class="source">Wislowska et al. (2017). Night and day variations of sleep in patients with disorders of consciousness</span></span>
</figcaption>
</figure>
<p>It is crucial to be able to distinguish these disorders of consciousness from a <a href="https://www.ncbi.nlm.nih.gov/books/NBK559026/">locked-in syndrome</a>, also the result of a severe brain injury, but located in the brain stem. The result is paralysis of the body, head and face, although consciousness and cognition may be preserved. Communication is most often achieved through eye movements.</p>
<h2>The challenging diagnosis of disorders of consciousness</h2>
<p>Such altered states of consciousness are difficult to diagnose because brain imaging does not yet allow an optimal diagnosis of unresponsive wakefulness or minimal consciousness. The most widely accepted method at present is a bedside assessment using standardized and validated scales. The <a href="https://www.glasgowcomascale.org/">Glasgow Coma Scale</a> is the most known and investigated one. However, it does not assess the most frequent signs of minimal consciousness (notably visual fixation/pursuit). This is in contrast to the <a href="https://www.tbims.org/combi/crs/CRS%20Syllabus.pdf">Coma Recovery Scale-Revised</a> or the <a href="https://www.sciencedirect.com/science/article/pii/S1877065720301603#fig0005">Simplified evaluation of consciousness disorders</a>, which identify auditory, visual, motor and language signs of consciousness. </p>
<p>Without such assessments, a diagnosis based on simple clinical observation would have about <a href="https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-9-35">40% error</a>. These assessments must be repeated about <a href="https://pubmed.ncbi.nlm.nih.gov/28543735/">five times in a short period of time</a> (for example, two weeks), reducing the risk of diagnostic errors from 36% after one assessment to 5% after the fifth.</p>
<p>The challenge in making a correct diagnosis on the basis of behavioural assessments is partly related to patients’ fluctuating level of arousal, and also lesions such as <a href="https://pubmed.ncbi.nlm.nih.gov/16633170/">palpebral ptosis</a> – inability to open the eyes – that can impede the assessment of visual fixations/pursuits.</p>
<h2>A new approach through language</h2>
<p>One of the most frequent questions health professionals
are faced with when taking care of these patients is: “Can they understand us?” The assessment of language skills is also a key step in establishing communication with the patient. However, if the language regions of the patient’s brain have been too damaged, their state of consciousness could be underestimated – he or she may not respond to commands simply because they’re not understood. Indeed, a <a href="https://pubmed.ncbi.nlm.nih.gov/24743226/">2015 study</a> of stroke patients with aphasia – language impairment following brain damage – showed that about 25% of who were fully conscious could be erroneously diagnosed as minimally conscious.</p>
<p>These data underline the importance of improving the assessment of language in patients waking up from coma. Current research is trying to better understand how we can assess the language abilities of these patients, despite their visual, auditory and motor dysfunctions.</p>
<h2>An aid to limit misdiagnosis</h2>
<p>Our recent <a href="https://pubmed.ncbi.nlm.nih.gov/34864003/">systematic review of the literature</a> reports the use of electroencephalography (EEG) or magnetic resonance imaging (MRI) methods, which make it possible to measure the activity of brain regions generally linked to language. Two types of tasks can be performed with either technique:</p>
<ul>
<li><p><strong>Passive listening tasks</strong> consist of having patients listen to words or sentences. For example, we look at the difference in brain activity depending on whether the patient hears noise or language. According to the studies reviewed, about 33% of patients considered to have an unresponsive wakefulness syndrome show signs of language comprehension.</p></li>
<li><p><strong>Active listening tasks</strong>, in which the patient is asked to think about a physical activity – for example, “Imagine playing tennis”. If the patient shows signs of the activation of motor imagery on EEG or MRI, it can be deduced that he or she has responded to the command. Approximately 20% of patients considered to have an unresponsive wakefulness syndrome are able to perform these tasks.</p></li>
</ul>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/504690/original/file-20230116-20-81tqyi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Passive tasks involve comprehension of words, sentences… Active tasks require responding to a verbal command" src="https://images.theconversation.com/files/504690/original/file-20230116-20-81tqyi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/504690/original/file-20230116-20-81tqyi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=216&fit=crop&dpr=1 600w, https://images.theconversation.com/files/504690/original/file-20230116-20-81tqyi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=216&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/504690/original/file-20230116-20-81tqyi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=216&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/504690/original/file-20230116-20-81tqyi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=272&fit=crop&dpr=1 754w, https://images.theconversation.com/files/504690/original/file-20230116-20-81tqyi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=272&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/504690/original/file-20230116-20-81tqyi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=272&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Passive vs. active tasks to identify language comprehension in awake coma patients. The former are based on EEG and MRI and assess brain activity in response to different language stimuli; the latter measure the ability to respond to verbal commands, either behaviourally or via EEG and MRI.</span>
<span class="attribution"><span class="source">Charlène Aubinet</span></span>
</figcaption>
</figure>
<p>The <a href="https://pubmed.ncbi.nlm.nih.gov/33938027/">level of consciousness of these patients could therefore be misdiagnosed</a>. Since they respond to commands, they are actually in a minimally conscious state.</p>
<h2>The consequences of misdiagnosis</h2>
<p>Such diagnostic errors can have a significant impact on the prognosis and management of the patient. This is because health care staff tend to be <a href="https://pubmed.ncbi.nlm.nih.gov/26035522/">more attentive to the pain management of a minimally conscious patient</a> than an unresponsive patient who is considered to have impaired pain perception. More importantly, end-of-life decisions will be discussed more often in the case of an <a href="https://pubmed.ncbi.nlm.nih.gov/21221625/">unresponsive patient</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/505312/original/file-20230119-22-llxaxs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Language-related abilities increase progressively as states of consciousness evolve toward emergence" src="https://images.theconversation.com/files/505312/original/file-20230119-22-llxaxs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/505312/original/file-20230119-22-llxaxs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=339&fit=crop&dpr=1 600w, https://images.theconversation.com/files/505312/original/file-20230119-22-llxaxs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=339&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/505312/original/file-20230119-22-llxaxs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=339&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/505312/original/file-20230119-22-llxaxs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=426&fit=crop&dpr=1 754w, https://images.theconversation.com/files/505312/original/file-20230119-22-llxaxs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=426&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/505312/original/file-20230119-22-llxaxs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=426&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">One-third and one-fifth of patients with an unresponsive wakefulness syndrome (UWS) respond to passive and active tasks, respectively. As their level of consciousness increases, through the minimally conscious state (MCS) and up to the emergence from the minimally conscious state (EMCS), more residual language abilities are observed in patients.</span>
<span class="attribution"><span class="source">Charlène Aubinet</span></span>
</figcaption>
</figure>
<p>It therefore seems crucial to improve language assessment to better capture coma patients’ actual state of consciousness. Such efforts are only precipitated by the fact health professionals do not always have access to EEG and MRI techniques. At Liège University, our team has developed a <a href="https://www.tandfonline.com/doi/abs/10.1080/02699052.2021.1894482">“brief evaluation of receptive aphasia”</a> (BERA) tool that presents pairs of images to the patient, prompting them to fix their eyes on the one that corresponds to the word or sentence they hear. With this test, we hope to provide a new, easily accessible and inexpensive tool for all clinicians in coma recovery.</p>
<p>There are still many advances to be made in this area of clinical research. The methods of assessment (but also of rehabilitation) will have to evolve in parallel with those of intensive care medicine, in order to help patients such as “Paul” to be able to communicate again.</p>
<hr>
<p><em>For health professionals wishing to learn more, online materials are available on our [new diagnostic scales].</em></p><img src="https://counter.theconversation.com/content/197127/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Les auteurs ne travaillent pas, ne conseillent pas, ne possèdent pas de parts, ne reçoivent pas de fonds d'une organisation qui pourrait tirer profit de cet article, et n'ont déclaré aucune autre affiliation que leur organisme de recherche.</span></em></p>New research shows that post-coma patients who appear to be in a minimally conscious state can still mentally react to language. This finding could help improve their diagnosis and treatment.Charlène Aubinet, Chargée de recherches FNRS, neuropsychologue et logopède, Université de LiègeOlivia Gosseries, Co-directrice du Coma Science Group, Chercheuse qualifiée FNRS, Neuropsychologue, Université de LiègeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1934462023-01-08T19:00:28Z2023-01-08T19:00:28ZWhat are ‘masking’ and ‘camouflaging’ in the context of autism and ADHD?<figure><img src="https://images.theconversation.com/files/494311/original/file-20221109-8962-jjhq3g.jpg?ixlib=rb-1.1.0&rect=0%2C6%2C4288%2C2837&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Many <a href="http://link.springer.com/10.1007/s10803-018-03878-x">autistic</a> people and <a href="https://psychcentral.com/adhd/adhd-masking">ADHD-ers</a> report using “masking” and “camouflaging” in their lives. This is where people <a href="https://www.emeraldinsight.com/doi/10.1108/AIA-09-2018-0036">conceal certain traits</a> and replace them with neurotypical ones to avoid being recognised as neurominorities. </p>
<p>This can <a href="https://www.karger.com/Article/Abstract/524122">involve</a> changing things such as </p>
<ul>
<li><p>tone of voice</p></li>
<li><p>facial expressions</p></li>
<li><p>eye contact</p></li>
<li><p>speech patterns, and</p></li>
<li><p>body language.</p></li>
</ul>
<p><a href="http://link.springer.com/10.1007/s10803-018-03878-x">Autistic</a> people make these changes in an effort to match dominant social norms.</p>
<p>Some <a href="https://www.youtube.com/watch?v=Jk-FtgGV8I8&vl=en%22%22">ADHD</a>-ers also embrace the concept, though <a href="https://psychcentral.com/adhd/adhd-masking">ADHD masking</a> remains under-explored in research. </p>
<p>Masking and camouflaging can cause immense <a href="https://link.springer.com/article/10.1007/s10803-018-03878-x">stress</a> for neurominorities. And they’re different to the adjustments neurotypical people make in response to social cues. While neurotypical people may moderate behaviour to enhance social success, <a href="https://link.springer.com/article/10.1007/s10803-021-04912-1">masking and camouflaging differ</a> as they are used to avoid negative consequences.</p>
<p>Here’s what you need to know.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/494327/original/file-20221109-12-zqnn54.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A person's face is covered by a leaf." src="https://images.theconversation.com/files/494327/original/file-20221109-12-zqnn54.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/494327/original/file-20221109-12-zqnn54.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/494327/original/file-20221109-12-zqnn54.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/494327/original/file-20221109-12-zqnn54.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/494327/original/file-20221109-12-zqnn54.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/494327/original/file-20221109-12-zqnn54.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/494327/original/file-20221109-12-zqnn54.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Masking and camouflaging are linked to physical, emotional, and intellectual exhaustion.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>How does masking or camouflaging affect neurominorities?</h2>
<p>Masking and camouflaging are linked to:</p>
<ul>
<li><p><a href="https://link.springer.com/article/10.1007/s10803-017-3166-5">physical, emotional, and intellectual exhaustion</a></p></li>
<li><p><a href="https://pubmed.ncbi.nlm.nih.gov/29039208/">anxiety, depression, and poor self-image</a></p></li>
<li><p>negative <a href="https://pubmed.ncbi.nlm.nih.gov/32148068/">self-perception and identity loss</a></p></li>
<li><p><a href="https://doi.org/10.1089/aut.2021.0021%22%22">burnout</a> </p></li>
<li><p><a href="https://link.springer.com/article/10.1007/s10803-019-04323-3">suicidality</a>.</p></li>
</ul>
<p>Yet, without masking and camouflaging many autistic people report experiencing difficulty <a href="https://link.springer.com/article/10.1007/s10803-017-3166-5">getting jobs and qualifications</a> or issues with <a href="https://pubmed.ncbi.nlm.nih.gov/29071566/">social exclusion</a>. They may even risk <a href="https://link.springer.com/article/10.1007/s10803-017-3166-5">verbal and physical assaults</a>. </p>
<p>The consequences of unmasking can be enormous. Disclosing autism can risk <a href="https://theconversation.com/australia-has-kept-disabled-migrant-children-out-for-decades-its-time-we-gave-them-protection-instead-73677">permanent</a> residency <a href="https://www.equaljusticeproject.co.nz/articles/burdens-and-borders-disability-discrimination-in-new-zealand-immigration-law2020">applications</a> being denied, and may lead to unwanted “<a href="https://abcnews.go.com/Nightline/shock-therapy-massachussetts-school/story?id=11047334">treatments</a>”. For autistic people of colour in particular, this can even result in violence from <a href="https://doi.org/10.1089/aut.2020.0077">police</a>. </p>
<h2>Reducing the need for masking and camouflaging</h2>
<p>In my late twenties, I found out I am autistic. Suddenly, things started to make sense. From failing ninth grade, to chronic unemployment, and social isolation, I realised my disorder was causing these poor outcomes – or so I first thought. </p>
<p>This medical model understanding assumes disability is created primarily by a <a href="https://www.cdc.gov/ncbddd/autism/facts.html">medical disorder</a> in the body or brain. That struggles autistic people or ADHD-ers face with social life, employment, or schooling are because their brain doesn’t work the way it “should”. </p>
<p><iframe id="tc-infographic-790" class="tc-infographic" height="400px" src="https://cdn.theconversation.com/infographics/790/c3bc862b28fd8bfabcb03a877134e0029e20465e/site/index.html" width="100%" style="border: none" frameborder="0"></iframe></p>
<p>The <a href="https://dsq-sds.org/article/%C2%A0view/1065/1254">neurodiversity movement</a> asks us to rethink this. It challenges us to ask how society can change to better include <a href="https://www.amazon.com.au/NeuroDiversity-Birth-Idea-Judy-Singer/dp/064815470X">neurominorities</a> (rather than seeing neurominorities as a problem needing to be “fixed”). </p>
<p>The <a href="https://theautisticadvocate.com/2018/06/takethemaskoff/">#TakeTheMaskOff campaign</a> on Twitter, driven by neurodiversity activists, aims to address anti-autism discrimination and boost social acceptance and inclusion.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1030567928155045888"}"></div></p>
<p>So, how can society prevent poor wellbeing, social, educational, and employment outcomes for neurominorities? And what’s this got to do with masking?</p>
<p>My <a href="https://www.karger.com/Article/Abstract/524122">research</a> suggests a first step is to begin identifying how neurotypical privilege – the cultural and social dominance of neurotypical norms – drives masking and camouflaging. </p>
<p>My work on autism is influenced by the work of activists who have <a href="https://doi.org/10.1002/(SICI)1099-0798(199624)14:1%3c41::AID-BSL223%3e3.0.CO;2-R">paved the way for disability anti-discrimination policy</a>. My recent paper <a href="https://www.karger.com/Article/Abstract/524122">argues</a> for an <a href="https://doi.org/10.1146/annurev-soc-073014-112142">intersectional approach</a> to examining why autistic people use masking and camouflaging and what changes we can make to reduce the need for them to do so. </p>
<p>Intersectionality identifies how forces such as colonialism, racism and patriarchy help reinforce systemic inequity. </p>
<p>For example, might neurominority women in male-dominated settings be under extra pressure to mask in order to “pass” as neurotypical? Might <a href="https://www.amazon.com/All-Weight-Our-Dreams-Racialized/dp/0997504501">autistic people of colour</a> face <a href="https://link.springer.com/chapter/10.1007/978-981-13-8437-0_14">unique risks</a> when unmasking, in ways that most white people do not?</p>
<p>Perhaps one day we will see legal protections for visible neurominorities who cannot mask and camouflage, or choose not to.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/494329/original/file-20221109-26-wxbtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman covers her eye with a cardboard piece." src="https://images.theconversation.com/files/494329/original/file-20221109-26-wxbtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/494329/original/file-20221109-26-wxbtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/494329/original/file-20221109-26-wxbtt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/494329/original/file-20221109-26-wxbtt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/494329/original/file-20221109-26-wxbtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/494329/original/file-20221109-26-wxbtt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/494329/original/file-20221109-26-wxbtt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">We can begin identifying how neurotypical privilege – the cultural and social dominance of neurotypical norms – drives masking and camouflaging.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/woman-holding-a-cardboard-box-with-a-drawing-7304963/">Photo by Leeloo Thefirst/Pexels</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>In the meantime, you can support <a href="https://www.latrobe.edu.au/mylatrobe/neurodiversity-as-the-next-frontier-part-1-celebrating-all-kinds-of-clever-in-higher-education/">neurodiversity inclusion</a> by:</p>
<ul>
<li><p>learning what <a href="https://au-ti.com/2022/08/22/the-checklist-of-neurotypical-privilege/">neurotypical privilege</a> is and how it is perceived by neurominorities</p></li>
<li><p>acknowledging that unmasking and advocating for change can be <a href="https://www.frontiersin.org/articles/10.3389/fpsyg.2021.727542/full">risky</a> for neurominorities</p></li>
<li><p>learning about <a href="https://opal.latrobe.edu.au/articles/educational_resource/Neurodiversity_toolkit/13322981">neurodiversity cultural sensitivity</a></p></li>
<li><p>facilitating remote work and study options, and analysing how working from home during COVID lockdowns <a href="https://www.latrobe.edu.au/mylatrobe/what-learning-teaching-and-working-from-home-can-teach-us-about-neurodiversity/">showed what’s possible</a></p></li>
<li><p>using disability support resources designed by neurominorities. Try <a href="http://neurodiversityhub.org">Neurodiversity Hub</a>, which has resources for universities, employers, and students.</p></li>
</ul>
<p>Schools, workplaces, social circles, and research institutions should address neurotypical privilege. They should empower diverse neurominority leaders, and support them to drive systemic cultural change.</p>
<p>This is how we can remove barriers to unmasking, and improve life for neurominorities at work, school and in broader society.</p><img src="https://counter.theconversation.com/content/193446/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Elizabeth Radulski sits on the advisory board for Untapped.</span></em></p>Masking or camouflaging is where people conceal certain traits and replace them with neurotypical ones to avoid being recognised as visibly neurodiverse.Beth Radulski, PhD Candidate and Neurodiversity Project Manager, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1962102022-12-11T19:07:11Z2022-12-11T19:07:11ZIs my RAT actually working? How to tell if your COVID test can detect Omicron<figure><img src="https://images.theconversation.com/files/499734/original/file-20221208-12-65pkn0.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1000%2C666&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/asian-woman-using-rapid-antigen-test-2056195568">Shutterstock</a></span></figcaption></figure><p>You’ve tested negative for COVID using a rapid antigen test (RAT), but are a close contact of a positive family member and have symptoms. So you might be wondering if you’re really COVID-negative or if the test is working as well as it should.</p>
<p>There are many reasons why your RAT may not give you <a href="https://theconversation.com/15-things-not-to-do-when-using-a-rapid-antigen-test-from-storing-in-the-freezer-to-sampling-snot-176364">the results</a> <a href="https://theconversation.com/my-rats-are-negative-but-i-still-think-i-might-have-covid-should-i-get-a-pcr-test-194527">you expect</a>. But one factor is whether RATs can detect the Omicron variant of SARS-CoV-2 (the virus that causes COVID).</p>
<p>We know the virus has mutated during the pandemic. So health authorities and researchers are investigating whether RATs can still detect the <a href="https://www.who.int/activities/tracking-SARS-CoV-2-variants">more recent versions</a> of the virus.</p>
<p>The good news is, based on the <a href="https://www.tga.gov.au/sites/default/files/2022-10/post-market-review-of-antigen-and-rapid-antigen-tests-table.pdf">limited data released</a>, all RATs meant for use at home in Australia that have been independently tested so far seem to be able to detect Omicron. The bad news is that not all RATs have been independently tested yet. Yours might be one of those.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/15-things-not-to-do-when-using-a-rapid-antigen-test-from-storing-in-the-freezer-to-sampling-snot-176364">15 things not to do when using a rapid antigen test, from storing in the freezer to sampling snot</a>
</strong>
</em>
</p>
<hr>
<h2>What do mutations have to do with RATs?</h2>
<p>RATs diagnose COVID infection by detecting specific viral proteins. So there are concerns that as the virus evolves and produces altered viral proteins, this may affect the tests’ ability to diagnose COVID as well as they detected previous variants.</p>
<p>Whether RATs can adequately detect Omicron has been raised by authorities and researchers in various countries including <a href="https://www.bmj.com/content/378/bmj-2022-071215">The Netherlands</a>, <a href="https://pubmed.ncbi.nlm.nih.gov/35458384/">Belgium</a> and <a href="https://pubmed.ncbi.nlm.nih.gov/36339133/">Chile</a>, as well as Australia.</p>
<p>One <a href="https://journals.asm.org/doi/10.1128/jcm.01097-22">Australian study</a>
tested six RATs on Delta, and Omicron lineages BA.4, BA.5 and BA.2.75. The researchers found the kits performed equally well across the different samples at higher viral loads (higher concentrations of the virus), although one kit’s overall sensitivity fell below minimum sensitivity requirements. </p>
<p>However, <a href="https://pubmed.ncbi.nlm.nih.gov/36339133/">some international studies</a> have found RATs are less able to detect Omicron, particularly when <a href="https://pubmed.ncbi.nlm.nih.gov/36339133/">viral loads are lower</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/my-rats-are-negative-but-i-still-think-i-might-have-covid-should-i-get-a-pcr-test-194527">My RATs are negative but I still think I might have COVID. Should I get a PCR test?</a>
</strong>
</em>
</p>
<hr>
<h2>So what’s the case in Australia?</h2>
<p>Australia’s regulator, the Therapeutic Goods Administration (TGA), initially relied on <a href="https://www.tga.gov.au/products/covid-19/covid-19-tests/post-market-review-antigen-and-rapid-antigen-tests">test data</a> provided by RAT manufacturers to determine the test kit met World Health Organization <a href="https://www.who.int/publications/m/item/technical-specifications-for-selection-of-essential-in-vitro-diagnostics-for-sars-cov-2">standards</a> for acceptable sensitivity (ability to detect a positive case).</p>
<p>The TGA also requires manufacturers to send updated test data as new variants arise to demonstrate their test still meets those WHO standards.</p>
<p>But the TGA has also commissioned <a href="https://www.tga.gov.au/products/covid-19/covid-19-tests/post-market-review-antigen-and-rapid-antigen-tests">independent testing of RATs</a> to verify how well they detect the more recent COVID variants.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1590104415033335808"}"></div></p>
<p>They are tested for their ability to detect the wild-type virus (the original strain), the Delta variant, and the Omicron variant. The TGA does not state which specific lineages (descendents) of Omicron are included in the testing. </p>
<p>As it completes its analysis on individual tests (or groups of tests), the TGA reports them in a <a href="https://www.tga.gov.au/sites/default/files/2022-10/post-market-review-of-antigen-and-rapid-antigen-tests-table.pdf">table that’s publicly available</a>, which will be updated as more data come in.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/from-centaurus-to-xbb-your-handy-guide-to-the-latest-covid-subvariants-and-why-some-are-more-worrying-than-others-192945">From Centaurus to XBB: your handy guide to the latest COVID subvariants (and why some are more worrying than others)</a>
</strong>
</em>
</p>
<hr>
<h2>What does the table tell us?</h2>
<p>You can look up the brand name, manufacturer and batch number of the RAT you have at home. Look for those labelled “self-tests” (more on the different types of tests and their results later).</p>
<p>The most important columns in the table are those that indicate whether the kit passed its independent validation. Look for four ticks to indicate the kit meets minimum standards for detecting the original virus, Delta and Omicron variants, and has passed the quality test. A cross indicates is has not passed that component of the validation.</p>
<p>Haven’t found a result for your RAT? </p>
<p>If a product comes in two versions – a self-test and a type of test used in health-care facilities known as a point-of-care test (POCT in the table) – only one may be tested.</p>
<p>If that’s the case, the symbol † means testing was only done on one version and you can use those results for your test. Look for a matching registration number to make sure you’re comparing like with like.</p>
<p>The final column indicates what type of data the manufacturer has provided. Some manufacturers have tested the sensitivity of their kits for Omicron lineages BA.4 and BA.5.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-are-there-so-many-new-omicron-sub-variants-like-ba-4-and-ba-5-will-i-be-reinfected-is-the-virus-mutating-faster-182274">Why are there so many new Omicron sub-variants, like BA.4 and BA.5? Will I be reinfected? Is the virus mutating faster?</a>
</strong>
</em>
</p>
<hr>
<h2>What does the table not tell us?</h2>
<p>Just because your test has no ticks or crosses against it, this doesn’t mean it can’t detect Omicron. It could be that the independent validation has yet to be completed or uploaded to the table. So the jury is out.</p>
<p>The table also does not tell us what lineages of Omicron were tested for, although in some cases the manufacturer has supplied clinical test data. </p>
<p>The table data were only current as of October. Seeing as the number of cases of sub-variant infections <a href="https://theconversation.com/what-can-we-expect-from-this-latest-covid-wave-and-how-long-is-it-likely-to-last-194444">has risen since then</a>, so we don’t really know if that is impacting on the sensitivity of even those tests that have recently been validated.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-can-we-expect-from-this-latest-covid-wave-and-how-long-is-it-likely-to-last-194444">What can we expect from this latest COVID wave? And how long is it likely to last?</a>
</strong>
</em>
</p>
<hr>
<h2>I’ve grappled with the table, now what?</h2>
<p>If your brand of RAT has the ticks, particularly for Omicron, it has been assessed has having an acceptable sensitivity. If you are buying a RAT, check the table to see if that brand has been tested for sensitivity to the Omicron variant. </p>
<p>If your test has been sitting in a cupboard for months, check the expiry date before you use it. Also consider whether it has been stored at the correct temperature during that time (the instruction leaflet will tell you what that is).</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-accurate-is-your-rat-3-scenarios-show-its-about-more-than-looking-for-lines-175515">How accurate is your RAT? 3 scenarios show it's about more than looking for lines</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/196210/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Thea van de Mortel teaches into the Griffith University Master of Infection Prevention and Control program. </span></em></p>Some results of independent testing of rapid antigen tests available in Australia have been made public. Here’s what the data tell us.Thea van de Mortel, Professor, Nursing, School of Nursing and Midwifery, Griffith UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1802782022-08-15T19:13:29Z2022-08-15T19:13:29ZThe rise of ‘Dr. Google’: The risks of self-diagnosis and searching symptoms online<figure><img src="https://images.theconversation.com/files/468376/original/file-20220613-28923-zjfuv1.png?ixlib=rb-1.1.0&rect=0%2C2%2C1994%2C1239&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Googling symptoms to self-diagnose is not the same as virtual health care. </span> <span class="attribution"><span class="source">(Canva)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/the-rise-of--dr--google---the-risks-of-self-diagnosis-and-searching-symptoms-online" width="100%" height="400"></iframe>
<p>Virtual health care was <a href="https://doi.org/10.9778/cmajo.20200311">adopted more widely during the COVID-19 pandemic</a>, with many people accessing health-care providers remotely. However, easy and convenient access to technology means some people may choose to bypass health care and consult Dr. Google directly, with online self-diagnosis. </p>
<p>Here is a common scenario: picture someone sitting at home, when suddenly their head starts pounding, their eyes start to itch and their heart rate rises. They reach for their phone or laptop to quickly Google what can possibly be wrong. </p>
<p>It’s possible that the search results could offer accurate answers about the cause of the person’s symptoms. Or the search might erroneously suggest they’re well on their way to an early death.</p>
<p>As a researcher in the <a href="https://theconversation.com/virtual-care-still-has-a-place-in-post-pandemic-health-care-171401">virtual care domain</a>, I’m aware that online self-diagnosis has become very common, and that technology has shifted the way health care is delivered.</p>
<h2>Paging Dr. Google</h2>
<p>Online health information took on a new importance during the pandemic, when using <a href="https://doi.org/10.1038/s41598-022-13053-z">online sources to assess COVID-19 symptoms and self-triage</a> was encouraged. However, the act of self-diagnosis online is <a href="https://doi.org/10.1515/dx-2016-0045">not new</a>. </p>
<p>In 2013, it was reported that more than half of Canadians polled said they used Google search to <a href="https://globalnews.ca/news/752415/more-than-half-of-canadians-use-doctor-google-to-self-diagnose/">self-diagnose</a>. In 2020, 69 per cent of Canadians used the internet to search for <a href="https://www150.statcan.gc.ca/n1/daily-quotidien/210622/dq210622b-eng.htm">health information</a>, and 25 per cent used online sources to track their fitness or health.</p>
<p>Virtual care and online self-diagnosis share some beneficial traits, such as the convenience of not having to schedule an appointment, saving travel time to the doctor’s office and avoiding waiting rooms. However, the key difference between virtual care and Googling symptoms is that there is no direct communication with a physician when self-diagnosing online. </p>
<p>Some may choose to self-diagnose because they feel it gives them greater control over their health, while others may find it helps them better communicate symptoms to their physician. Some patients may <a href="https://doi.org/10.2196/14679">fear misdiagnosis</a> or <a href="https://www.ctvnews.ca/health/patients-who-suffer-from-medical-errors-face-rigged-system-critics-say-1.4507664">medical errors</a>. </p>
<figure class="align-center ">
<img alt="A woman in casual clothes on a sofa, looking at her phone with her hand to her face, looking concerned" src="https://images.theconversation.com/files/478157/original/file-20220808-9095-u6dphb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/478157/original/file-20220808-9095-u6dphb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/478157/original/file-20220808-9095-u6dphb.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/478157/original/file-20220808-9095-u6dphb.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/478157/original/file-20220808-9095-u6dphb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/478157/original/file-20220808-9095-u6dphb.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/478157/original/file-20220808-9095-u6dphb.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Googling symptoms and self-diagnosing can increase anxiety about health.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Over time, people can get better at diagnosing using the <a href="https://www.cbc.ca/radio/asithappens/as-it-happens-tuesday-edition-1.5969736/why-this-doctor-wants-you-to-consult-with-dr-google-to-help-diagnose-your-symptoms-1.5971609">internet</a>. Online sources can provide information and support for a specific medical condition. They may also be useful for people with ongoing symptoms who have been unable to get a diagnosis from <a href="https://patient.info/news-and-features/does-self-diagnosis-work-and-what-are-the-dangers">health-care professionals</a>. </p>
<p>Using the internet to <a href="https://doi.org/10.1016/j.ijmedinf.2005.07.032">learn more about a condition</a> after being diagnosed by a health-care provider may be useful and may decrease the stress of a diagnosis if the sites consulted are trustworthy.</p>
<p>However, trying to select credible sources and filter out misinformation can be an overwhelming process. Some information found online <a href="http://doi.org/10.1001/amajethics.2018.1052">has little to no credibility</a>. A study focusing on the spread of fake news on social media found that false information <a href="https://doi.org/10.1126/science.aap9559">travelled faster and wider than the truth</a>. </p>
<h2>Risks of self-diagnosis</h2>
<p>The risks of using online health resources include <a href="https://doi.org/10.3390%2Fijerph17030880">increased anxiety and fear</a>. The term <a href="https://betanews.com/2022/03/27/cyberchondria/">cyberchondria</a> can be defined as someone experiencing a high amount of <a href="https://doi.org/10.1080/15398285.2013.833452">health anxiety</a> from searching symptoms on the internet. </p>
<p>Self-misdiagnosis is also a danger, especially if doing so means not seeking treatment. For example, if a person confidently self-diagnoses their stomach pains as the stomach flu, they may hesitate to believe their doctor’s diagnosis of appendicitis. </p>
<p>There is also a risk of becoming so certain that one’s self-diagnosis is correct that it is difficult to accept a different diagnosis from a <a href="https://www.verywellhealth.com/perils-of-using-the-internet-to-self-diagnose-4117449">health-care professional</a>. Misdiagnoses can even be very serious if it results in failure to detect a possible heart attack, stroke, seizure or tumour. </p>
<p>Further risks may include increased stress on both the patient and doctors, ineffectively taking or mixing medications and increased costs for <a href="https://etactics.com/blog/problems-with-self-diagnosis">treatments or medicines that may not be necessary</a>.</p>
<h2>Social media and mental health</h2>
<p>Social media has given people a voice to <a href="https://doi.org/10.1145/2556288.2557214">share personal health-related remedies and stories</a>. The number of active social media users in Canada has increased by <a href="https://www.theglobalstatistics.com/canada-social-media-statistics/">1.1 million since 2021</a>. This raises the question of how people may be influenced by what they see online and if it may affect health choices.</p>
<p>In 2018, a Canadian internet use survey examined reports of the negative effects of using social media. It revealed over 12 per cent of users <a href="https://www150.statcan.gc.ca/n1/pub/36-28-0001/2021003/article/00004-eng.htm">reported feeling anxious or depressed, frustrated or angry, or envious of the lives of others</a>. </p>
<p>Conversely, social networks have also enabled people with mental health problems to feel unity by sharing experiences and support. However, this may also have contributed to self-diagnosis (and potentially self-misdiagnosis) of <a href="https://www.verywellmind.com/people-are-using-social-media-to-self-diagnose-5217072">mental health issues, such as anxiety and personality disorders</a>. This can put people at physical and mental risk if it results in inappropriate treatments.</p>
<p>The reality is that online self-diagnosis cannot be prevented. But those consulting Dr. Google should be aware of the potential risks, confirm information found online with a health-care provider and ask health-care providers for credible online sources of information about their diagnoses.</p><img src="https://counter.theconversation.com/content/180278/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Taleen Lara Ashekian does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Searching symptoms online has become so common there is a name for the condition of health anxiety induced by self-diagnosis on the internet: Cyberchondria.Taleen Lara Ashekian, Health Sciences Researcher & PhD Student, Simon Fraser UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1813922022-08-15T12:38:50Z2022-08-15T12:38:50ZWhich microbes live in your gut? A microbiologist tries at-home test kits to see what they reveal about the microbiome<figure><img src="https://images.theconversation.com/files/467238/original/file-20220606-13238-ocqxbp.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2305%2C1299&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">You and the trillions of microbes in your gut can live in harmony.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/bacteria-of-different-shapes-illustration-royalty-free-illustration/1359395159">Kateryna Kon/Science Photo Library via Getty Images</a></span></figcaption></figure><p>When you hear about the gut microbiome, does it ever make you wonder what tiny creatures are teeming inside your own body? As a <a href="https://scholar.google.com/citations?user=qtxpXdcAAAAJ&hl=en">microbiologist</a> who studies the microbiomes of plants, animals and people, I’ve watched public interest in gut microbes grow alongside research on their possible <a href="https://doi.org/10.1111/jgh.15728">dramatic</a> <a href="https://doi.org/10.1016/S1474-4422(19)30356-4">influence</a> on human health. In the past several years, microbiome testing techniques used by researchers like me are <a href="https://www.nytimes.com/2021/10/13/well/live/microbiome-test.html">now available to consumers at home</a>. These personal gut microbiome testing kits claim to tell you what organisms live in your gut and how to improve your gut microbiome using that data. </p>
<p>I became very interested in how these home test kits work, what kind of information they provide and whether they can really help you change your gut microbiome. So I ordered a few kits from Viome, Biohm and Floré, tried them out and sifted through my own microbiome data. Here is what I learned.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/VzPD009qTN4?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Your gut microbiome can be a partner in your health – if you have the right bacteria.</span></figcaption>
</figure>
<h2>How do gut microbiome kits work?</h2>
<p>All gut microbiome kits require you to carefully collect fresh fecal material. You put it in the various tubes provided in the kit and mail the samples back to the company. Several weeks later, you’ll receive a report describing the types of microbes living in your gut and suggestions on how to change your diet or activities to potentially alter your gut microbiome.</p>
<p>What consumers don’t exactly know is how companies generate the microbial profile data from your fecal sample. A typical approach I and other microbiome researchers use is to extract and decode the microbial genetic material from a sample. We use that genetic material to identify what species of microbes are present. The challenge is that <a href="https://doi.org/10.1016/j.cgh.2018.09.017">this process can be done in many different ways</a>, and there are no widely agreed-upon standards for what is the best method.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/464112/original/file-20220518-15-2bqtdm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Three gut microbiome test kits (Floré, Biohm, Viome) and a roll of toilet paper displayed on a tile floor" src="https://images.theconversation.com/files/464112/original/file-20220518-15-2bqtdm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/464112/original/file-20220518-15-2bqtdm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=587&fit=crop&dpr=1 600w, https://images.theconversation.com/files/464112/original/file-20220518-15-2bqtdm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=587&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/464112/original/file-20220518-15-2bqtdm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=587&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/464112/original/file-20220518-15-2bqtdm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=737&fit=crop&dpr=1 754w, https://images.theconversation.com/files/464112/original/file-20220518-15-2bqtdm.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=737&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/464112/original/file-20220518-15-2bqtdm.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=737&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Different home gut microbiome test kits can give conflicting results.</span>
<span class="attribution"><span class="source">Benjamin Wolfe</span>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
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<p>For example, microbiome analyses can be done on two types of genetic material, <a href="https://www.genome.gov/genetics-glossary/RNA-Ribonucleic-Acid">RNA</a> or <a href="https://www.genome.gov/about-genomics/fact-sheets/Deoxyribonucleic-Acid-Fact-Sheet">DNA</a>. If the profile is based on DNA, it can give you a snapshot only of what types of microbes are present, not what microbial genes are active or what activities they are doing in your body. On the other hand, if the profile is based on RNA, it can tell you not only what microbes are present, but also whether they’re playing a role in your digestion or producing metabolites that can reduce gut inflammation, among other functions. Viome <a href="https://www.viome.com/blog/why-rna-and-not-dna-how-viome-assesses-microbial-activity">generates its profiles</a> by looking at RNA, while the other companies use DNA.</p>
<p>Other data analysis choices, such as how different types of genetic sequences are sorted or which databases are used to identify the microbes, can also <a href="https://doi.org/10.1038/s41467-022-28034-z">affect the level of detail and utility</a> of the final data. Microbiome scientists are usually very careful to point out these nuances when interpreting their own data in scientific papers, but these details are not clearly presented in home microbiome kits.</p>
<h2>What I learned about my gut microbiome</h2>
<p>Though I used the same fecal sample for each kit, mixed well to ensure uniformity, I was surprised that each of the three products I tried gave me different impressions of my gut microbiome.</p>
<p>Each company gives an overall “score” on how your microbiome compares with what they consider to be “good” or “healthy.” My scores ranged from 39% (not great) to 72% (good). Interestingly, Viome, which infers microbial activity by using RNA, gave the lowest score. It noted that certain microbial activities happening in my gut, such as methane production and digestion efficiency, were not optimal.</p>
<p>I was also surprised by the variation in total microbial diversity each company reported. While there was general agreement in the overall groups of microbes present at the phylum level, a more general biological grouping, there was a huge range of variation at the species level, the most specific grouping. One company reported 527 species of microbes in my microbiome, while another reported 312. One reported only 27.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/467230/original/file-20220606-14-mt8tvp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Diagram depicting taxonomic rankings from species to kingdom" src="https://images.theconversation.com/files/467230/original/file-20220606-14-mt8tvp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/467230/original/file-20220606-14-mt8tvp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=525&fit=crop&dpr=1 600w, https://images.theconversation.com/files/467230/original/file-20220606-14-mt8tvp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=525&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/467230/original/file-20220606-14-mt8tvp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=525&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/467230/original/file-20220606-14-mt8tvp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=660&fit=crop&dpr=1 754w, https://images.theconversation.com/files/467230/original/file-20220606-14-mt8tvp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=660&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/467230/original/file-20220606-14-mt8tvp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=660&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Organisms like microbes can be classified into groups of relatedness, from highly specific (species) to very general (kingdom).</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/classification-system-vector-illustration-royalty-free-illustration/1185111143">VectorMine/iStock via Getty Images Plus</a></span>
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<p>Perhaps the most surprising finding was that my gut may harbor a microbe that could (there are many caveats here!) pose a problem for me in the future if I experience certain medical situations. Even though all companies explicitly looked for this microbe in my gut microbiome sample, only two actually found it. While I won’t name the exact microbe to protect my health privacy, I am not too worried about this result because more information, such as full genome sequencing of the microbe, is needed to better understand if this is actually a concerning strain of this microbe. But this finding does point to some surprising variation in results across different testing kits.</p>
<h2>Can this data really improve your gut microbiome?</h2>
<p>Many microbiome scientists like me would probably argue that the data these kits provide are limited in terms of giving you the power to alter your health. This is partly because gut microbiome science is still a new field with many unanswered questions. </p>
<p>One challenge is that different people can have <a href="https://doi.org/10.1038/nature11234">different proportions of microbes</a> present in their gut. This variation has made it difficult for scientists and health professionals to agree on what type of microbial community <a href="https://doi.org/10.1053/j.gastro.2020.09.057">makes a gut “healthy</a>.” Some specific species, such as the bacterium <em><a href="https://www.cdc.gov/cdiff/what-is.html">C. diff</a></em>, and some broad groups, like <a href="https://doi.org/10.1016/j.tibtech.2015.06.011">Proteobacteria</a>, are usually considered undesirable in high amounts. But there is no clear consensus on why one microbiome might be better than another.</p>
<p>Even if you did try to improve your gut microbiome based on what your gut test told you, the results might not turn out as you hoped. Probiotics or diet changes can alter the diversity of your gut microbiome and how it functions, but studies often find that each person can have different responses to these interventions, possibly because of their own <a href="https://doi.org/10.1016/j.cell.2018.08.041">unique microbiome composition</a>. The personalized ecology of gut microbial communities, combined with genetics, diet and other factors, makes it challenging to prescribe universal solutions.</p>
<p>So why bother getting a gut microbiome test? For me, it was illuminating to learn what microbes I carry around with me each day. When I eat my lunch, go for a run or get stressed out, the microbes in my gut respond to changes in my body. Researchers may not completely understand what those changes mean and how to manage our microbial partners, but getting to know who they are is a great first step.</p><img src="https://counter.theconversation.com/content/181392/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Benjamin Wolfe receives funding from the National Science Foundation and the United State Department of Agriculture.</span></em></p>The types of microbes residing in your gut can affect your mental and physical health. Home microbiome tests promise to help consumers improve the composition of their gut microbes.Benjamin Wolfe, Associate Professor of Biology, Tufts UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1870782022-08-08T02:35:59Z2022-08-08T02:35:59ZMental distress is much worse for people with disabilities, and many health professionals don’t know how to help<figure><img src="https://images.theconversation.com/files/477313/original/file-20220803-24-iqg2it.jpg?ixlib=rb-1.1.0&rect=11%2C0%2C7337%2C4902&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://image.shutterstock.com/image-photo/portrait-female-psychiatrist-interviewing-handicapped-600w-1059565349.jpg">Shutterstock</a></span></figcaption></figure><p>It’s no secret COVID is having a drastic impact on people’s wellbeing, and has worsened an already a rising trend in mental health problems. The <a href="https://apo.org.au/sites/default/files/resource-files/2022-07/apo-nid318464.pdf">Australian Institute for Health and Welfare</a>’s latest figures indicate some of our most vulnerable are struggling even more than most. </p>
<p>People with disabilities are experiencing very high rates of mental health difficulties and psychological distress. Yet health professionals often don’t feel equipped to treat people who are experiencing both disabilities and mental health difficulties. </p>
<p>About <a href="https://apo.org.au/sites/default/files/resource-files/2022-07/apo-nid318464_0.pdf">one in six Australians have a disability</a>, equating to around 4.4 million people. The latest figures show two-thirds of people with a disability report <a href="https://apo.org.au/sites/default/files/resource-files/2022-07/apo-nid318464_0.pdf">low to moderate levels of psychological distress</a>, while around a third report high or very high levels of psychological distress. </p>
<p>This compares to 92% of people without disability who report low to moderate psychological distress, and 8% who report high or very high distress. Almost a quarter of adults living with a disability report their mental health has worsened during the pandemic period.</p>
<h2>Why the difference?</h2>
<p>Research tells us there’s a strong <a href="https://www.sciencedirect.com/science/article/pii/S0277953617306639">link</a> between physical health and mental health. Some health behaviours are likely to have a detrimental effect on wellbeing, such as poor diet and inactivity. </p>
<p>In general, people with a disability are more likely to engage in <a href="https://apo.org.au/sites/default/files/resource-files/2022-07/apo-nid318464.pdf">risky health behaviours</a> than people without a disability. This includes not eating enough fruit and vegetables per day (47% compared to 41%), being overweight or obese according to body mass index (72% compared to 55%), and not doing enough physical activity for their age (72% compared to 52%). </p>
<p>Not only do people with disabilities have higher rates of mental health difficulties and health risk behaviours, they also face significant barriers when it comes to accessing effective and timely healthcare. These <a href="https://apo.org.au/sites/default/files/resource-files/2022-07/apo-nid318464.pdf">barriers</a> include lengthy wait times for healthcare, inaccessibility of buildings, costs and experiences of discrimination, including by health professionals. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1551364115892998146"}"></div></p>
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Read more:
<a href="https://theconversation.com/long-covid-should-make-us-rethink-disability-and-the-way-we-offer-support-to-those-with-invisible-conditions-187531">Long COVID should make us rethink disability – and the way we offer support to those with 'invisible conditions'</a>
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<h2>Be disabled or have mental health problems – but not both</h2>
<p>Working across the mental health and disability sectors, it is not uncommon to hear of people falling between the cracks of services. Someone may present to a disability-specific health service, and be turned away due to a co-occuring mental health difficulty. They might then present to a mental health service and be turned away due to having a disability. </p>
<p>A range of factors contribute to this issue. <a href="https://www.racgp.org.au/afp/2016/march/six-elements-of-integrated-primary-healthcare">Services are often funded</a> in a way that requires them to have certain criteria for the clients who can be seen. This unfortunately means those who do not meet the criteria are turned away. </p>
<p>Health and mental health practitioners agree people with disabilities have the <a href="https://www.tandfonline.com/doi/abs/10.3109/13668250.2017.1310825">right to receive</a> good mental heath care and access to services. But clinicians such as psychologists and counsellors report <a href="https://meridian.allenpress.com/idd/article-abstract/56/3/202/1682/Assessing-the-Confidence-of-Australian-Mental">low confidence</a> when working with people with disabilities, and <a href="https://www.tandfonline.com/doi/abs/10.3109/13668250.2017.1310825">insufficient training</a> in how to best help them. </p>
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<a href="https://images.theconversation.com/files/477315/original/file-20220803-22-ifgx3d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="man comforts woman by patting her arm" src="https://images.theconversation.com/files/477315/original/file-20220803-22-ifgx3d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/477315/original/file-20220803-22-ifgx3d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/477315/original/file-20220803-22-ifgx3d.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/477315/original/file-20220803-22-ifgx3d.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/477315/original/file-20220803-22-ifgx3d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/477315/original/file-20220803-22-ifgx3d.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/477315/original/file-20220803-22-ifgx3d.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Clinicians need training in how to help with disabilities in psychological distress.</span>
<span class="attribution"><a class="source" href="https://image.shutterstock.com/image-photo/closeup-psychologist-comforting-his-depressed-600w-247411303.jpg">Shutterstock</a></span>
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Read more:
<a href="https://theconversation.com/sometimes-i-dont-have-the-words-for-things-how-we-are-using-art-to-research-stigma-and-marginalisation-183819">'Sometimes I don't have the words for things': how we are using art to research stigma and marginalisation</a>
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<h2>Barriers can cause discrimination</h2>
<p>For a long time, people with certain disabilities such as intellectual disabilities were excluded from many mental health treatments. It was <a href="https://link.springer.com/article/10.1007/s41811-020-00091-6">assumed</a> that due to difficulties with learning and processing information, they did not have the capacity to engage in therapy. </p>
<p>Only in the past decade has this started to shift, with emerging mental health treatment programs <a href="https://link.springer.com/article/10.1007/s44202-021-00017-z">developed specifically</a> for people with disabilities.</p>
<p>A lack of training can also result in a form of discrimination called “<a href="https://journals.lww.com/jbisrir/Fulltext/2021/06000/Understanding_the_experience_of_diagnostic.7.aspx#:%7E:text=One%20form%20of%20discrimination%20is,a%20pre%2Dexisting%20mental%20illness.">diagnostic overshadowing</a>”. This is when a health practitioner <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/inm.13034">attributes</a> a person’s symptoms to an already existing disability or mental illness, rather than fully exploring the symptoms and considering alternate diagnoses. </p>
<p>Often, once a patient has a confirmed diagnosis, there is a tendency to attribute all new behaviours or symptoms to that diagnosis. As a result, diagnoses may be inaccurate or get missed. And treatment might not be adequate or effective. </p>
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Read more:
<a href="https://theconversation.com/hospitals-only-note-a-persons-intellectual-disability-20-of-the-time-so-they-dont-adjust-their-care-180590">Hospitals only note a person's intellectual disability 20% of the time – so they don't adjust their care</a>
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<h2>Investment and training is needed</h2>
<p>If we are to improve the mental health and wellbeing of people living with a disability, greater investment is needed. Doctors and practitioners require specialised training to work with clients with both disabilities and mental illness. </p>
<p>We also need greater collaboration between health, disability and mental health professionals, and increased communication so services work together rather than in isolation. We can look to the University of New South Wales’ <a href="https://www.3dn.unsw.edu.au/resources-professionals/health-mental-health-professionals">Department of Developmental Disability Neuropsychiatry</a>, University of Technology Sydney’s <a href="https://www.uts.edu.au/about/graduate-school-health/clinical-psychology/what-we-do/clinical-psychology-research">Graduate School of Health</a> and <a href="https://www.health.nsw.gov.au/mentalhealth/services/children/Pages/intellectual-disability-children-teens.aspx">Westmead Children’s Hospital</a> for examples of mental health and disability needs being integrated. Other services should follow this path.</p>
<p>As always, prevention and early intervention is key. While it is important we can effectively treat people who require help, it is also important for us to curb the rising trend of mental illness.</p><img src="https://counter.theconversation.com/content/187078/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anastasia Hronis has received funding from the James N Kirby Foundation for research into adapting therapy for children with intellectual disabilities.</span></em></p>People with disabilities experience very high rates of mental health difficulties and psychological distress. Yet health professionals often don’t feel equipped to treat them.Anastasia Hronis, Clinical Psychologist, University of Technology SydneyLicensed as Creative Commons – attribution, no derivatives.