tag:theconversation.com,2011:/africa/topics/chronic-fatigue-syndrome-2457/articlesChronic Fatigue Syndrome – The Conversation2024-02-02T17:48:19Ztag:theconversation.com,2011:article/2220402024-02-02T17:48:19Z2024-02-02T17:48:19ZEar seeds: what are they and why have they been controversially linked to ME without scientific evidence?<figure><img src="https://images.theconversation.com/files/571985/original/file-20240129-23-skab4z.jpg?ixlib=rb-1.1.0&rect=40%2C8%2C5422%2C3628&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Research into CFS has been chronically underfunded in the US and UK</span> <span class="attribution"><a class="source" href="https://www.gettyimages.co.uk/detail/news-photo/washington-dc-usaprotestors-chant-outside-the-white-house-news-photo/1243370052?adppopup=true">Nathan Posner/Anadolu Agency via Getty Images</a></span></figcaption></figure><p>When Giselle Boxer recently pitched her brand of a needle-free form of acupuncture known as “ear seeds” to the investors on BBC’s Dragons’ Den, it started a medical controversy.</p>
<p>Boxer told the Dragons that ear seeds had been part of a “personal healing journey” that she believed helped her recover from the debilitating condition ME (myalgic encephalomyelitis, also known as chronic fatigue syndrome) within 12 months. </p>
<p>Despite presenting no clinical evidence for the efficacy of Acu Seeds, <a href="https://metro.co.uk/2024/01/18/dragons-den-history-made-entrepreneur-leaves-everyone-stunned-20138931/">Boxer made TV history</a> by attracting offers of investment from <a href="https://www.independent.co.uk/tv/culture/dragons-den-acu-seeds-acupuncture-b2481309.html">all six of the Dragons</a>.</p>
<p>However, following objections by doctors, <a href="https://www.bmj.com/content/384/bmj.q204.full">charities</a>, <a href="https://www.mirror.co.uk/tv/tv-news/my-daughters-severe-killed-dragons-31989464">ME patients</a>, and <a href="https://www.dailymail.co.uk/news/article-13030801/BBC-Dragons-Den-faces-probe-ad-watchdog-fakery-storm-sparked-entrepreneur-Giselle-Boxers-unfounded-claims-ear-seeds-aided-recovery-ME.html">almost five hundred complaints</a> to the UK’s broadcasting standards authority Ofcom, the <a href="https://www.independent.co.uk/arts-entertainment/tv/news/dragons-den-episode-pulled-ear-seeds-controversy-b2485842.html">BBC removed the episode</a> from its streaming platform for review. </p>
<p>An edited version was later <a href="https://www.bbc.co.uk/news/entertainment-arts-68119301">reinstated with the following disclaimer</a>: “Acu seeds are not intended as a cure for any medical condition and advice should always be sought from a qualified healthcare provider about any health concerns.” </p>
<p><a href="https://www.mirror.co.uk/tv/tv-news/bbc-invited-dragons-den-star-31951616">Boxer responded</a> by saying she “never said the ear seeds are a cure”, adding: “I have always said ME is a complex condition and that a combination of healing approaches is what I believed supported my recovery.”</p>
<p>So why did Boxer’s pitch prove so successful – and controversial? </p>
<p>On the show, she described the dire effect of the condition on her life, explaining how she “went from working in a top advertising agency with a busy social life and exercising regularly to being mostly housebound, unable to walk for more than five minutes without having to get back into bed”. She said was told by doctors that she “would never recover, work again or have children”.</p>
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<p>Her account will be familiar to the <a href="https://ammes.org/how-many-people-have-mecfs">17 million to 24 million patients worldwide with ME</a>. It’s little surprise, then, that her suggestion of a simple treatment such as ear seeds could help attracted such attention.</p>
<p>Ear seeds are used in a form of alternative therapy known as auricular therapy or ear acupressure. This involves the application of tiny seeds or pellets to specific points on the ear. These seeds are secured with adhesive tape and left in place to stimulate acupressure points. </p>
<p>The practice is a form of traditional Chinese medicine based on the idea that specific points on the ear correspond to various organs and systems throughout the body. </p>
<p>The stimulation of acupressure points is said by proponents to have therapeutic effects including pain relief, stress reduction, improved sleep and enhanced energy flow. However, robust scientific evidence supporting their therapeutic use does not exist.</p>
<h2>No cure</h2>
<p>The reality is that ME patients face a complex, long-term medical condition without hope of a quick recovery. Patients experience persistent and debilitating fatigue that affects all aspects of their daily lives. Over <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6599355/pdf/12889_2019_Article_7225.pdf">half of patients are unable to work</a> and a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/pdf/nihms858973.pdf">quarter of patients are bed- or housebound</a>. </p>
<p><a href="https://www.cdc.gov/me-cfs/about/index.html">The hallmark symptom of ME is post-exertional malaise</a>, when minimal physical or cognitive activity worsens other ME symptoms such as tiredness, pain, difficulty thinking, sleep problems, sore throats, headaches and feeling dizzy.</p>
<p>In most patients, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9152619/">ME onset follows an infection</a>. The exact disease mechanism is unknown, with <a href="https://www.science.org/doi/10.1126/science.abo1261">research suggesting</a> disturbances in the immune and nervous systems, the gut and energy production. </p>
<p>There is no cure for ME. Instead treatments focus on symptom management. <a href="https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs">Recommendations</a> include fatigue-, pain- and energy-management tecniques. For some patients, cognitive behavioural therapy will be offered, as <a href="https://www.health.ny.gov/diseases/conditions/me-cfs/">ME is a life-changing illness</a> with many patients going on to develop depression, stress, or anxiety. </p>
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<img alt="Close up of a pair of hands and one ear. One hand holds a pack of ear seeds and the other applies an ear seed to the upper ear using a gold applicator stick" src="https://images.theconversation.com/files/571988/original/file-20240129-15-e1fy1a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/571988/original/file-20240129-15-e1fy1a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=521&fit=crop&dpr=1 600w, https://images.theconversation.com/files/571988/original/file-20240129-15-e1fy1a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=521&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/571988/original/file-20240129-15-e1fy1a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=521&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/571988/original/file-20240129-15-e1fy1a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=654&fit=crop&dpr=1 754w, https://images.theconversation.com/files/571988/original/file-20240129-15-e1fy1a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=654&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/571988/original/file-20240129-15-e1fy1a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=654&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">There’s no scientific evidence that ear seeds are beneficial for symptoms of ME/CFSE.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.co.uk/detail/news-photo/liu-chi-feng-chairman-of-health-promotion-association-in-news-photo/2509533?adppopup=true">SAM YEH/AFP via Getty Images</a></span>
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<p>The debilitating nature of ME and the lack of effective cures need to be addressed through <a href="https://www.tandfonline.com/doi/full/10.1080/21641846.2022.2124775">properly funded, biomedical research</a> into its causes, so we can develop evidence based treatments. This is one of the reasons Boxer’s claims <a href="https://meassociation.org.uk/2024/01/digital-spy-why-dragons-dens-latest-episode-was-so-damaging/">caused such dismay</a>. </p>
<p>Despite the absence of scientific evidence for ear seeds, the controversy seems to have benefited the brand – the week after the show had aired, <a href="https://www.independent.co.uk/life-style/dragons-den-giselle-boxer-me-steve-bartlett-acu-seeds-b2483450.html">Boxer said</a> “I sold more than double my sales for two years in just one night.” </p>
<p>This is unsurprising considering that <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/jep.13938">ME patients are desperate for effective treatment</a>, especially given the historic <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6567989/">lack of health system support</a> for the condition.</p>
<p><a href="https://pubmed.ncbi.nlm.nih.gov/32568148/">A serious under-investment</a> in rigorous biomedical research into ME has meant that the illness remains somewhat of a mystery. The absence of proven or effective treatments has created an environment allowing unproven treatment claims to thrive and potentially mislead vulnerable patients. </p>
<p>Addressing this gap in research funding is crucial for promoting scientific integrity and ensuring that treatments are grounded in robust scientific evidence.</p>
<p><em>The Conversation contacted Acu Seeds for comment but did not receive a response.</em></p><img src="https://counter.theconversation.com/content/222040/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Katharine Seton 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 lack of properly funded research into ME or chronic fatigue syndrome has allowed unproven treatment claims to thrive.Katharine Seton, Immunology Research Scientist, ME/CFS Research, Quadram InstituteLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2050272023-09-26T20:06:45Z2023-09-26T20:06:45ZWhat do we know about long COVID in kids? And what do I do if I think my child has it?<p>While COVID in children has generally been milder than in adults, there are concerns long COVID may be a major consequence for children and young people arising from the pandemic.</p>
<p>Long COVID, also known as “post-COVID condition” is an umbrella term for a range of symptoms that can persist for months after the initial acute phase of COVID. <a href="https://www.nature.com/articles/s41598-022-13495-5">Long COVID may include</a> fatigue, post-exertional malaise, disordered sleep, cognitive difficulties, pain, anxiety and depression. These symptoms can impact people of any age, including children. </p>
<p>Recognition and support from health-care professionals is important in recovering from long COVID. Identifying it early and implementing management strategies can prevent symptoms becoming entrenched, and prevent more significant problems in the future.</p>
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Read more:
<a href="https://theconversation.com/covid-19-in-babies-heres-what-to-expect-181940">COVID-19 in babies – here's what to expect</a>
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<h2>What does long COVID in kids look like?</h2>
<p>Defining long COVID has been difficult due to varied symptoms and time frames that make it difficult to consistently characterise and compare the condition. </p>
<p>A <a href="https://www.nature.com/articles/s41598-022-13495-5">review</a> of long COVID research in children found mood symptoms, fatigue and sleep disorders were the symptoms most commonly reported. In total, more than 40 symptoms were included, ranging from mental health, gastrointestinal, cardiac and respiratory symptoms.</p>
<p>However many studies on long COVID have lacked a control group (meaning comparisons with children who didn’t have COVID), making it difficult to separate the symptoms of long COVID from the indirect impacts of the pandemic on children. </p>
<p>For example, high rates of depression and anxiety have been <a href="https://www.sciencedirect.com/science/article/pii/S0165032721010491?via%3Dihub">observed in children</a>, likely related to the effects of lockdowns, school closures and social isolation. These conditions share many features with long COVID and complicate the interpretation of research into the condition. </p>
<p>More <a href="https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2802893">recent</a> <a href="https://jamanetwork.com/journals/jamapediatrics/article-abstract/2795569">studies</a> that have included a control group identified only a very small increase in long-COVID symptoms following mild COVID infection, compared with those who tested negative for COVID. This potentially means long COVID in kids is quite rare.</p>
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<h2>What we see in our COVID clinic for kids</h2>
<p>Our COVID follow-up clinic at The Royal Children’s Hospital Melbourne was running from mid-2020 to mid-2023. We saw more than 600 children throughout that time. </p>
<p>In <a href="https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(21)00124-3/fulltext">our experience</a>, most children recover fully after COVID in a similar way to other viruses. </p>
<p>A small proportion experience prolonged symptoms including fatigue, post-exertional malaise, concentration difficulties and pain. These symptoms are similar to other post-viral syndromes such as chronic fatigue syndrome (also known as myalgic encephalitis), for which viruses are a common precursor. Some patients we saw fulfilled the criteria for chronic fatigue syndrome following their COVID infection.</p>
<p>Another group of children in our clinic developed physical complaints, such as headache and chest pain. But most of these children had normal test results, which is reassuring. However the symptoms can still have an impact on day-to-day functioning such as participation in school and other activities.</p>
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Read more:
<a href="https://theconversation.com/more-than-100-australian-kids-have-had-multisystem-inflammatory-syndrome-after-covid-what-should-parents-watch-for-183533">More than 100 Australian kids have had multisystem inflammatory syndrome after COVID. What should parents watch for?</a>
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<h2>How long does it last?</h2>
<p>Recognition and support of children with long COVID symptoms is often delayed. Children and families report that they don’t feel heard or are misunderstood by others, including health-care providers. </p>
<p>It’s hard to live with the uncertainty of not knowing how long symptoms will last. </p>
<p>In our experience with long COVID, most children experience complete recovery or significant improvement from three to six months after infection. </p>
<p>There has typically been <a href="https://www.nice.org.uk/guidance/ng188">minimal impact on functioning</a>. However there have been rare severe cases, with more debilitating fatigue impacting attendance at school and activities. These patients generally receive a diagnosis of chronic fatigue syndrome and are managed accordingly.</p>
<h2>How is long COVID in kids managed?</h2>
<p>Children and families feel frustrated because there is no specific treatment or cure.</p>
<p>While there are trials underway in adults, there is no medication or cure available for long COVID. </p>
<p>The Australian government has announced <a href="https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/50-million-for-research-in-to-long-covid">$50 million</a> for research into long COVID, which will provide further avenues of support and treatment. </p>
<p>The current recommended approach for managing long COVID in children is based on the recognised management of chronic fatigue syndrome.</p>
<p>This approach may involve a range of health professionals including GPs, paediatricians, physiotherapists, exercise physiologists and psychologists, according to the needs of the child. They support the patient to build up to managing daily tasks such as going to school, exercising, or participating in activities, taking into consideration how much energy they have at each stage to prevent burnouts.</p>
<p>Symptoms such as trouble sleeping, dizziness and cognitive difficulties may be managed through lifestyle modifications such as sleep hygiene practices (going to bed at the same time, no screens before bedtime), or medication. </p>
<p>It’s important activities continue, at a level that’s appropriate for the patient’s stage of recovery. This includes school and social outings. </p>
<p>While a cure for long COVID is not yet available, self-management and attempting to minimise secondary impacts such as missed school are crucial to preventing mental health issues and physical deconditioning (the body becoming accustomed to doing less).</p>
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Read more:
<a href="https://theconversation.com/curious-kids-how-does-a-virus-stop-148916">Curious Kids: how does a virus stop?</a>
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<h2>I think my child has long COVID, what should I do?</h2>
<p>It’s important to seek medical attention if COVID-related symptoms such as fatigue persist for more than four weeks. A review with your GP or paediatrician is a good place to start if you have concerns for your child.</p>
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<p><em>This article was co-authored by Colette Reveley and Eva Sudbury, paediatricians in the Department of Adolescent Medicine and General Medicine at the Royal Children’s Hospital, Melbourne.</em></p><img src="https://counter.theconversation.com/content/205027/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Shidan Tosif is supported by a Murdoch Childrens' Research Institute Clinician Scientist Fellowship.</span></em></p>Recognition and support from health-care professionals are essential for a fast and full recovery from long COVID.Shidan Tosif, Honorary Clinical Associate Professor, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1961282023-02-23T00:01:55Z2023-02-23T00:01:55ZWe can learn a lot about long COVID from years of diagnosing and treating chronic fatigue syndrome<figure><img src="https://images.theconversation.com/files/510806/original/file-20230217-18-votphf.jpg?ixlib=rb-1.1.0&rect=17%2C0%2C5973%2C3988&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>Long COVID reportedly affects <a href="https://www.sciencedirect.com/science/article/pii/S0140673622012144">about 10%</a> of <a href="https://theconversation.com/when-does-covid-become-long-covid-and-whats-happening-in-the-body-when-symptoms-persist-heres-what-weve-learnt-so-far-188976">post-COVID patients</a>, and describes a range of ongoing or new symptoms three months post-infection.</p>
<p>Given the COVID pandemic has <a href="https://covid19.who.int/">infected</a> more than 750 million people worldwide, it’s clear long COVID will create a significant burden on society for years to come. Australia’s parliament is currently undertaking an <a href="https://www.aph.gov.au/longandrepeatedcovid">inquiry into long COVID</a>, with hearings this week. </p>
<p>While some long COVID symptoms are unique (microclots, lung scar tissue, or organ damage due to acute infection), most resemble the clinically very <a href="https://www.mdpi.com/1648-9144/57/5/418">similar</a> disorder myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome. </p>
<p>While the term myalgic encephalomyelitis is preferred by many patients who have fought to have the illness recognised as an illness that affects the brain rather than just tiredness, we’ll use the term chronic fatigue syndrome here for simplicity. </p>
<p>As similar post-viral illnesses, there is much we can learn about long COVID from our years of diagnosing and managing chronic fatigue syndrome.</p>
<h2>Diagnosing post-viral illnesses</h2>
<p>Chronic fatigue syndrome, like long COVID, is often triggered by a viral infection, and an increase in chronic fatigue syndrome cases has <a href="https://www.tandfonline.com/doi/full/10.1080/21641846.2020.1778227">followed</a> most viral epidemics and pandemics. </p>
<p>The main difference is the length of time in exhibiting symptoms: <a href="http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf">more than six months</a> for chronic fatigue syndrome and more than two months for long COVID. Many long COVID patients will therefore also <a href="https://www.nature.com/articles/s41579-022-00846-2#Sec12">fit the criteria</a> for chronic fatigue syndrome, with recent estimates suggesting this <a href="https://bpsmedicine.biomedcentral.com/articles/10.1186/s13030-022-00250-5">may be as high as 50%</a>.</p>
<p>Diagnosing long COVID is a challenge. Clinicians are confronted with a wide array of possible (often subjective) <a href="https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext">symptoms</a> (more than 200), which can be overwhelming within standard consultation periods. </p>
<p>Previous <a href="https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1473-z">studies</a> on chronic fatigue syndrome patients have established a simple clinical method based on the patient’s capacity to stand upright, which may also prove useful in diagnosing long COVID.</p>
<p>Diagnosing long COVID in childhood and adolescence is exacerbated by the difficulty patients may have in articulating and understanding their symptoms, particularly at a time already characterised by significant change. </p>
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<a href="https://images.theconversation.com/files/510807/original/file-20230217-2034-8vze77.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Woman rubbing face at desk" src="https://images.theconversation.com/files/510807/original/file-20230217-2034-8vze77.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/510807/original/file-20230217-2034-8vze77.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/510807/original/file-20230217-2034-8vze77.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/510807/original/file-20230217-2034-8vze77.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/510807/original/file-20230217-2034-8vze77.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/510807/original/file-20230217-2034-8vze77.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/510807/original/file-20230217-2034-8vze77.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">Diagnosing long COVID is challenging due to the wide array of symptoms.</span>
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<p>Some symptoms such as shortness of breath are less common in children, and as with chronic fatigue syndrome, patients may look well, so their symptoms may be disregarded or misinterpreted. This could <a href="https://onlinelibrary.wiley.com/doi/10.1111/jpc.12425">increase the time to get a diagnosis</a> and access care, with symptoms <a href="https://www.mdpi.com/2077-0383/10/16/3603">persisting for years</a> following a diagnosis.</p>
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Read more:
<a href="https://theconversation.com/we-got-some-key-things-wrong-about-long-covid-here-are-5-things-weve-learnt-199974">We got some key things wrong about long COVID. Here are 5 things we've learnt</a>
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<p>Most of the proposed disease mechanisms in long COVID overlap with what has already been proposed in chronic fatigue syndrome. These <a href="https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1473-z">include</a> a defect in the way long COVID patient’s cells make energy, inflammation in the brain, and persistent activation of the immune system. Understanding the mechanisms that underlie long COVID will ultimately lead to the development of a diagnostic test and treatments for the debilitating symptoms. </p>
<p>As an illustrative example, <a href="https://www.mdpi.com/1422-0067/21/3/1074">research</a> here in Australia identified a specific defect in the final enzyme in energy production in cells from chronic fatigue syndrome patients. This was accompanied by an increase in the activity of an enzyme that is important for sensing and responding to stress. </p>
<p>The cells had an <a href="https://www.mdpi.com/1422-0067/22/4/2046">increased reliance</a> on alternative energy building-blocks, making the process of energy production less efficient. When used in combination, these altered measures could <a href="https://www.mdpi.com/1422-0067/21/3/1142">identify</a> chronic fatigue syndrome with high accuracy, meaning they could be used to diagnose chronic fatigue syndrome, and potentially similar post-viral fatigue conditions like long COVID.</p>
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Read more:
<a href="https://theconversation.com/how-physios-and-occupational-therapists-are-helping-long-covid-sufferers-195354">How physios and occupational therapists are helping long COVID sufferers</a>
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<h2>Managing post-viral illnesses</h2>
<p>Looking at how <a href="https://www.nice.org.uk/guidance/ng206">chronic fatigue syndrome</a> is managed has proved useful in managing <a href="https://www.nice.org.uk/guidance/ng188">long COVID</a>, with the current management guidelines closely mimicking each other. </p>
<p>This includes educating and supporting patients to manage and monitor their symptoms, rehabilitation from a multidisciplinary team (which may include physicians, physiotherapists, occupational therapists, psychologists and others), and modifying lifestyle and work routines.</p>
<p>Techniques often used in chronic fatigue syndrome are also likely to be useful in long COVID patients. These may include activity-pacing, sleep hygiene, pain medication, and increasing fluid and salt intake, which can help manage rapid increases in heart rate experienced by some patients when they get up from sitting or lying down. </p>
<p>It may also be beneficial to refer long COVID patients to clinicians with expertise in chronic fatigue syndrome, particularly for health professionals who are less familiar with treating post-viral fatigue syndromes.</p>
<p>Post-viral illnesses are not new, and long COVID may represent the latest addition to this family. Each post-viral illness has some characteristics that make it unique, but they share similar clinical symptoms, and potentially, similar underlying disease mechanisms.</p>
<p>Partnership and collaboration between chronic fatigue syndrome and long COVID researchers should be encouraged to accelerate the development of treatments, management strategies, and hopefully, prevention of this debilitating illness.</p>
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Read more:
<a href="https://theconversation.com/when-does-covid-become-long-covid-and-whats-happening-in-the-body-when-symptoms-persist-heres-what-weve-learnt-so-far-188976">When does COVID become long COVID? And what's happening in the body when symptoms persist? Here's what we've learnt so far</a>
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<img src="https://counter.theconversation.com/content/196128/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sarah Annesley receives funding from ME Research UK, The Judith Jane Mason & Harold Stannet Williams Memorial Foundation (‘The Mason Foundation’) and La Trobe University Understanding and Preventing Disease Research Theme.</span></em></p><p class="fine-print"><em><span>Dr Elisha Josev receives funding from The Judith Jane Mason & Harold Stannet Williams Memorial Foundation (‘The Mason Foundation’) and ME Research UK. </span></em></p><p class="fine-print"><em><span>Michelle Tavoletti is affiliated with Emerge Australia. </span></em></p>Diagnosing and treating long COVID is difficult. But given the similarities to chronic fatigue, there are things we can learn from existing research.Sarah Annesley, Senior Postdoctoral Research Fellow in Cell and Molecular Biology, La Trobe UniversityElisha Josev, Senior Research Officer and Paediatric Clinical Neuropsychologist, Murdoch Children's Research InstituteMichelle Tavoletti, Adjunct Research Officer, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1952762023-01-12T13:22:40Z2023-01-12T13:22:40ZMeditation and mindfulness offer an abundance of health benefits and may be as effective as medication for treating certain conditions<figure><img src="https://images.theconversation.com/files/503183/original/file-20230105-12-ywtjr5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People of any age or walk of life can access and benefit from meditation.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/young-multiracial-latina-woman-meditating-at-home-royalty-free-image/1394449576?phrase=mindfulness%20meditation&adppopup=true">Daniel de la Hoz/iStock via Getty Images Plus</a></span></figcaption></figure><p>Many people look to diet trends or new exercise regimens – often with questionable benefit – to get a healthier start on the new year. But there is one strategy that’s been shown time and again to boost both mood and health: meditation.</p>
<p>In late 2022, a <a href="http://doi.org/10.1001/jamapsychiatry.2022.3679">high-profile study</a> made a splash when it claimed that meditation may work as well as a common drug named Lexapro for the treatment of anxiety. Over the past couple of decades, similar evidence has emerged about mindfulness and meditation’s broad array of health benefits, for purposes ranging from stress and <a href="https://doi.org/10.1007/s12160-016-9844-2">pain reduction</a> to <a href="https://doi.org/https://doi.org/10.1016/j.psc.2017.08.008">depression treatments</a> to <a href="https://doi.org/10.1016/j.cpr.2011.04.006">boosting brain health</a> and helping to manage excessive <a href="https://doi.org/10.1155/2022/3523432">inflammation and long COVID-19</a>. </p>
<p>Despite the mounting body of evidence showing the health benefits of meditation, it can be hard to weigh the science and to know how robust it is.</p>
<p>I am a <a href="https://scholar.google.com/citations?user=S9ykvZUAAAAJ&hl=en">neuroscientist studying the effects of stress and trauma</a> on <a href="https://theconversation.com/meditation-holds-the-potential-to-help-treat-children-suffering-from-traumas-difficult-diagnoses-or-other-stressors-a-behavioral-neuroscientist-explains-189037">brain development in children and adolescents</a>. I also study how mindfulness, meditation and <a href="https://theconversation.com/the-runners-high-may-result-from-molecules-called-cannabinoids-the-bodys-own-version-of-thc-and-cbd-170796">exercise</a> can positively affect brain development and mental health in youth. </p>
<p>I am very excited about how meditation can be used as a tool to provide powerful new insights into the ways the mind and brain work, and to fundamentally change a person’s outlook on life. And as a mental health researcher, I see the promise of meditation as a low- or no-cost, evidence-based tool to improve health that can be relatively easily integrated into daily life. </p>
<p>Meditation requires some training, discipline and practice – which are not always easy to come by. But with some specific tools and strategies, it can be accessible to everyone.</p>
<h2>What are mindfulness and meditation?</h2>
<p>There are many different types of meditation, and mindfulness is one of the most common. Fundamentally, mindfulness is a <a href="https://theconversation.com/why-you-should-give-the-gift-of-mindfulness-this-new-year-195711">mental state</a> that, according to <a href="https://doi.org/10.1176/ajp.149.7.936">Jon Kabat-Zinn</a> a renowned expert in mindfulness-based practices, involves “awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally.” </p>
<p>This means not ruminating about something that happened in the past or worrying about that to-do list. Being focused on the present, or living in the moment, has been shown to have a broad array of benefits, including <a href="https://doi.org/10.7205/MILMED-D-14-00677">elevating mood, reducing anxiety</a>, <a href="https://doi.org/10.1016/0163-8343(82)90026-3">lessening pain</a> and potentially improving <a href="https://doi.org/10.1007/s11065-021-09519-y">cognitive performance</a>. </p>
<p>Mindfulness is a skill that can be practiced and cultivated over time. The goal is that, with repetition, the benefits of practicing mindfulness carry over into everyday life – when you aren’t actively meditating. For example, if you learn that you aren’t defined by an emotion that arises transiently, like anger, then it may be harder to stay angry for long. </p>
<p>The health benefits of meditation and other strategies aimed at stress reduction are thought to stem from increasing levels of <a href="https://doi.org/10.1038/nrn.2015.7">overall mindfulness</a> through practice. Elements of mindfulness are also present in practices like yoga, martial arts and dance that require focusing attention and discipline.</p>
<p>The vast body of evidence supporting the health benefits of meditation is too expansive to cover exhaustively. But the studies I reference below represent some of the top tier, or the <a href="https://doi.org/10.1007/978-0-387-88555-1_2">highest-quality and most rigorous summaries</a> of scientific data on the topic to date. Many of these include systematic reviews and meta-analyses, which synthesize many studies on a given topic. </p>
<h2>Stress and mental health</h2>
<p>Mindfulness-based programs have been shown to significantly reduce stress in a variety of populations, ranging from <a href="https://doi.org/10.1177/01640275211043486">caregivers of people living with dementia</a> to <a href="https://doi.org/10.1111/mbe.12307">children during the COVID-19 pandemic</a>. </p>
<p>Meta-analyses published during the pandemic show that mindfulness programs are effective for reducing <a href="https://doi.org/10.1002/smi.3138">symptoms of post-traumatic stress disorder</a>, <a href="https://doi.org/10.1016/j.jocrd.2022.100712">obsessive-compulsive disorder</a>, <a href="https://doi.org/10.1016/j.jpsychires.2020.12.048">attention-deficit/hyperactivity disorder</a> and <a href="https://doi.org/10.1089/jicm.2021.0036">depression</a> – including the <a href="https://theconversation.com/more-than-4-in-5-pregnancy-related-deaths-are-preventable-in-the-us-and-mental-health-is-the-leading-cause-193909">particularly vulnerable time</a> during <a href="https://doi.org/10.1111/papt.12441">pregnancy and the postnatal period</a>. </p>
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<figcaption><span class="caption">In addition to improving mood and lowering stress, mindfulness has been shown to elevate cognitive performance, cut down on mind wandering and distractibility and increase emotional intelligence.</span></figcaption>
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<p>Mindfulness-based programs also show promise as a treatment option for anxiety disorders, which are the most common mental disorders, affecting an estimated <a href="https://doi.org/10.1016/S2215-0366(21)00395-3">301 million people globally</a>. While effective treatments for anxiety exist, many patients do not have access to them because they lack insurance coverage or transportation to providers, for instance, or they may experience only limited relief.</p>
<p>It’s important to note, however, that for those affected by mental or substance use disorders, mindfulness-based approaches should not replace first-line treatments like medicine and psychotherapy such as cognitive behavioral therapy. Mindfulness strategies should be seen as a supplement to these evidence-based treatments and a complement to healthy lifestyle interventions like physical activity and healthy eating. </p>
<h2>How does meditation work? A look into the brain</h2>
<p>Studies show that regular meditators experience better attention control and improved control of heart rate, breathing and <a href="https://doi.org/10.1073%2Fpnas.0707678104">autonomic nervous system functioning</a>, which regulates involuntary responses in the body, such as blood pressure. Research also shows that people who meditate have
<a href="https://doi.org/10.1073/pnas.0707678104">lower levels of cortisol</a> – a hormone involved in the stress response – than those who don’t. </p>
<p>A recent systematic review of neuroimaging studies showed that focused attention meditation is associated with <a href="https://doi.org/10.1016/j.neubiorev.2022.104846">functional changes in several brain regions</a> involved in cognitive control and emotion-related processing. The review also found that more experienced meditators had stronger activation of the brain regions involved in those cognitive and emotional processes, suggesting that the brain benefits improve with more practice. </p>
<p>A regular meditation practice may also <a href="https://doi.org/10.1097/01.wnr.0000186598.66243.19">stave off age-related thinning of the cerebral cortex</a>, which may help to protect against age-related disease and cognitive impairment. </p>
<h2>Limitations of meditation research</h2>
<p>This research <a href="https://doi.org/10.1016/j.jaim.2022.100620">does have limits</a>. These include a lack of a consistent definition for the types of programs used, and a lack of rigorously controlled studies. In gold-standard randomized controlled trials with medications, study participants don’t know whether they are getting the active drug or a placebo. </p>
<p>In contrast, in trials of mindfulness-based interventions, participants know what condition they are assigned to and are not “blinded,” so they may expect that some of the health benefits may happen to them. This creates a sense of expectancy, which can be a confounding variable in studies. Many meditation studies also don’t frequently include a control group, which is needed to assess how it compares with other treatments.</p>
<h2>Benefits and wider applications</h2>
<p>Compared with medications, mindfulness-based programs may be more easily accessible and have fewer negative side effects. However, medication and psychotherapy – <a href="https://theconversation.com/cbt-dbt-psychodynamic-what-type-of-therapy-is-right-for-me-171101">particularly cognitive behavioral therapy</a> – work well for many, and a combination approach may be best. Mindfulness-based interventions are also cost-effective and have better health outcomes than usual care, particularly among <a href="https://doi.org/10.1007/s12671-022-01960-1">high-risk patient populations</a> – so there are economic benefits as well.</p>
<p>Researchers are studying ways to deliver mindfulness tools on a computer or smartphone app, or with virtual reality, which may be <a href="https://doi.org/10.1016/j.explore.2022.08.001">more effective</a> than conventional in-person meditation training. </p>
<p>Importantly, mindfulness is not just for those with physical or mental health diagnoses. Anyone can use these strategies to reduce the risk of disease and to take advantage of the health benefits in everyday life, such as improved sleep and cognitive performance, elevated mood and lowered stress and anxiety. </p>
<h2>Where to get started?</h2>
<p>Many recreation centers, fitness studios and even universities offer in-person meditation classes. For those looking to see if meditation can help with the treatment of a physical or mental condition, there are over 600 <a href="https://clinicaltrials.gov/ct2/results?term=mindfulness+OR+meditation&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=">clinical trials</a> currently recruiting participants for various conditions, such as pain, cancer and depression. </p>
<p>If you want to try meditation from the comfort of your home, there are many free online videos on how to practice, including meditations for sleep, stress reduction, mindful eating and more. Several apps, such as Headspace, appear promising, with randomized controlled trials <a href="https://doi.org/10.2196/40924">showing benefits for users</a>. </p>
<p>The hardest part is, of course, getting started. However, if you set an alarm to practice every day, it will become a habit and may even translate into everyday life – which is the ultimate goal. For some, this may take some time and practice, and for others, this may start to happen pretty quickly. Even a <a href="https://doi.org/10.1007/s12671-019-01163-1">single five-minute session</a> can have positive health effects.</p><img src="https://counter.theconversation.com/content/195276/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Hilary A. Marusak does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Mindfulness, one of the most common forms of meditation, is a skill that must be cultivated and practiced. With some training and discipline, it can help anyone live more fully in the moment.Hilary A. Marusak, Assistant Professor of Psychiatry and Behavioral Neurosciences, Wayne State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1879842022-08-08T20:03:06Z2022-08-08T20:03:06ZWhy am I so tired and when is it time to see the doctor about it? A GP explains<figure><img src="https://images.theconversation.com/files/476813/original/file-20220801-24-vmtt8t.jpg?ixlib=rb-1.1.0&rect=0%2C141%2C7839%2C5741&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>Everyone feels tired sometimes. But how do you know whether your tiredness is a problem worth seeing a doctor about? And with all the mental and emotional strain we have been under from the pandemic, isn’t it just normal to feel tired?</p>
<p>Tiredness is subjective; what’s normal for one person won’t be for the next. Many people see their GPs reporting tiredness (a recent study in Ireland found that it was <a href="https://www.researchgate.net/publication/11376157_Prevalence_of_fatigue_in_general_practice">present in 25% of patients</a>). </p>
<p>As a GP, my first question to someone who feels tired is: “how well can you function?”. </p>
<p>If tiredness is interfering with your everyday life and your ability to do what you like to do, it should be explored further.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/476809/original/file-20220801-22375-w5zbiu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman looks tired at work." src="https://images.theconversation.com/files/476809/original/file-20220801-22375-w5zbiu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/476809/original/file-20220801-22375-w5zbiu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476809/original/file-20220801-22375-w5zbiu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476809/original/file-20220801-22375-w5zbiu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476809/original/file-20220801-22375-w5zbiu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476809/original/file-20220801-22375-w5zbiu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476809/original/file-20220801-22375-w5zbiu.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">If your level of tiredness is outside the range of normal for you, chat to a GP about it.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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Read more:
<a href="https://theconversation.com/fatigue-after-covid-is-way-more-than-just-feeling-tired-5-tips-on-what-to-do-about-it-179478">Fatigue after COVID is way more than just feeling tired. 5 tips on what to do about it</a>
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<h2>Some common causes of persistent tiredness</h2>
<p>Poor sleep is an obvious and very common cause of tiredness. Often patients tell me “Oh, lack of sleep is not the cause, I sleep fine, possibly too much!” But on questioning they admit they don’t wake up feeling refreshed.</p>
<p>That’s a bit of a giveaway because it means their sleep quality is poor, even if the quantity seems enough. They could be suffering from sleep <a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/sleep-apnoea">apnoea</a>, where breathing stops and starts while a person is asleep. Apnoea can lead to serious long-term health problems, so it’s worth investigating.</p>
<p>Alcohol can also wreak havoc on a person’s sleep quality and they wake feeling unrefreshed.</p>
<p>Another common cause of tiredness is depression – and don’t forget, someone can be depressed without feeling they have low mood. For example, they may feel <a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/depression#symptoms-of-depression">irritable or frustrated, or struggle to concentrate</a>. This is concerning, because such patients may fly under the radar and not realise this is actually depression. Unexplained tiredness may be the predominant symptom of depression, with other symptoms only coming to light with careful questioning. </p>
<p>Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious long-term illness that, among other symptoms, causes people to feel extreme fatigue – well beyond the range of “normal” tiredness. It can begin with patients noticing a degree or type of tiredness different from their past experience, and can be difficult to diagnose in the early stages.</p>
<p>There are other potential causes of tiredness – problems such as low iron, thyroid disease, diabetes, kidney disease, heart disease and many more. Treatment for these can alleviate the tiredness too.</p>
<p>Tiredness also accompanies many illnesses, but should not persist after recovery.</p>
<p>The take-home message is this: if tiredness is interfering with your life, there are many possible causes and it’s worth speaking to a GP about it.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/476810/original/file-20220801-67813-uha9wt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/476810/original/file-20220801-67813-uha9wt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/476810/original/file-20220801-67813-uha9wt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476810/original/file-20220801-67813-uha9wt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476810/original/file-20220801-67813-uha9wt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476810/original/file-20220801-67813-uha9wt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476810/original/file-20220801-67813-uha9wt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476810/original/file-20220801-67813-uha9wt.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">Poor sleep is a very common cause of tiredness.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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<h2>What does ‘interfering with life’ actually look like?</h2>
<p>Screening tools for a concerning level of tiredness include the <a href="https://nasemso.org/wp-content/uploads/neuro-epworthsleepscale.pdf">Epworth Sleepiness Scale</a> and the <a href="https://www.mdcalc.com/calc/3992/stop-bang-score-obstructive-sleep-apnea">STOP-BANG</a> score. You can do both tests at home and take the results to your GP.</p>
<p>But even if you have normal scores, your tiredness is worth investigating if you:</p>
<ul>
<li><p>feel too tired to exercise (this can be a vicious cycle because regular exercise can actually give you more energy – however, it can be <a href="https://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better">risky</a> for people with ME/CFS to exercise, so caution is required for these patients)</p></li>
<li><p>feel too tired to go out, see friends or do activities you once enjoyed</p></li>
<li><p>hit the alarm snooze button a lot because you don’t wake feeling refreshed</p></li>
<li><p>doze off in front of the TV regularly</p></li>
<li><p>spend the whole day wishing you could go back to bed.</p></li>
</ul>
<p>If, along with tiredness, you also have any of the following “red flags”, it is vital you see a GP sooner rather than later: unexplained weight loss, shortness of breath, recurrent fevers, bleeding from your bowels or gums, swollen and sore joints, or other new symptoms concerning you.</p>
<p>I sometimes get asked if wanting an afternoon nap is a red flag. That’s a tricky one; a late afternoon energy slump is pretty normal physiologically (we have whole cultures built around the idea of a siesta, and I often wish Australia was more open to the idea!).</p>
<p>And, of course, many of us lead busy lives and are subject to crushing expectations around work, study and parenting. Tiredness may not always be sign of a physical health problem, but rather that the balance between work and rest is not right.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/476812/original/file-20220801-9120-s4sk8l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/476812/original/file-20220801-9120-s4sk8l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/476812/original/file-20220801-9120-s4sk8l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476812/original/file-20220801-9120-s4sk8l.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476812/original/file-20220801-9120-s4sk8l.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476812/original/file-20220801-9120-s4sk8l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476812/original/file-20220801-9120-s4sk8l.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476812/original/file-20220801-9120-s4sk8l.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">Do you feel refreshed when you wake up?</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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<h2>OK, I’m starting to realise my tiredness might be a problem. What now?</h2>
<p>Talk to your doctor. What happens next depends on the individual and unique factors at play. </p>
<p>Some people need investigating immediately if possible serious underlying causes are suspected.</p>
<p>However, there are often obvious ways to address lifestyle factors, and we’d start there. Is alcohol or caffeine interfering with your sleep? Do you have good <a href="https://www.cci.health.wa.gov.au/%7E/media/CCI/Mental-Health-Professionals/Sleep/Sleep---Information-Sheets/Sleep-Information-Sheet---04---Sleep-Hygiene.pdf">sleep hygiene habits</a>? Is your exercise level appropriate and your diet not <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7071235/">too high in sugar</a>?</p>
<p>After we’ve tackled lifestyle factors, we can look at whether to investigate for health conditions that might be contributing to the tiredness. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/476814/original/file-20220801-20-yzxuzi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/476814/original/file-20220801-20-yzxuzi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/476814/original/file-20220801-20-yzxuzi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476814/original/file-20220801-20-yzxuzi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476814/original/file-20220801-20-yzxuzi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476814/original/file-20220801-20-yzxuzi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476814/original/file-20220801-20-yzxuzi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476814/original/file-20220801-20-yzxuzi.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">Do you often fall asleep on the couch watching TV?</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>What about post-COVID fatigue?</h2>
<p>As I have <a href="https://theconversation.com/fatigue-after-covid-is-way-more-than-just-feeling-tired-5-tips-on-what-to-do-about-it-179478">written</a> before, fatigue is about more than feeling just tired:</p>
<blockquote>
<p>Tiredness can get better with enough rest, while fatigue persists even if someone is sleeping and resting more than ever.</p>
</blockquote>
<p>If you’re especially concerned about fatigue after recovering from COVID and are worried about long COVID, definitely talk to a doctor. </p>
<p>The factors at play are complex and unique to the individual, so a good doctor can help you work out when tiredness has crossed over into true fatigue.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/still-coughing-after-covid-heres-why-it-happens-and-what-to-do-about-it-179471">Still coughing after COVID? Here's why it happens and what to do about it</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/187984/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Natasha Yates is affiliated with the RACGP</span></em></p>A good doctor can help you work out when tiredness has crossed over into true fatigue.Natasha Yates, Assistant Professor, General Practice, Bond UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1875312022-07-31T20:06:02Z2022-07-31T20:06:02ZLong COVID should make us rethink disability – and the way we offer support to those with ‘invisible conditions’<p>Australia has only a handful of specialists familiar with managing what happens when the nervous system can’t properly regulate the body, as sometimes occurs with long COVID. While <a href="https://www1.racgp.org.au/newsgp/clinical/long-covid-clinics-likely-to-be-required-across-th">long COVID clinics</a> are being set up, there are no government-funded clinics for this type of nervous system dysfunction and private waiting lists are now long.</p>
<p>From the outset, long-COVID sufferers faced the same prejudice experienced by patients before them who sought assistance through Centrelink and the National Disability Insurance Scheme for the effects of <a href="https://www.researchgate.net/publication/329444535_MECFS_NDIS_and_the_Disability_Hurdle">post-infection conditions</a>. </p>
<p>Disability insurance schemes worldwide are driven by definitions and checklists that allow non-medical workforces to assess and approve candidates for support services. But those with “invisible illness” rarely meet these criteria. </p>
<p>If we are to manage the tidal wave of impairment and <a href="https://www.washingtonpost.com/health/2022/06/06/long-covid-disability-advocacy/">disability</a> bearing down on us, policymakers must heed the warnings that have been sounding for the past two years. We’ll need to rethink disability and support. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-need-to-brace-for-a-tsunami-of-long-covid-but-were-not-quite-sure-the-best-way-to-treat-it-183824">We need to brace for a tsunami of long COVID. But we're not quite sure the best way to treat it</a>
</strong>
</em>
</p>
<hr>
<h2>First warnings</h2>
<p>In November 2020, <a href="https://pubmed.ncbi.nlm.nih.gov/33428867/">data</a> later published in The Lancet were presented to the Chinese Academy of Medical Sciences. The researchers warned of persistent symptoms after COVID, including fatigue, cognitive dysfunction, palpitations, chest pain, depression, insomnia and headache.</p>
<p>The colloquial term “long COVID” was soon coined. Varying iterations of the name followed (including “<a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/covid-long-haulers-long-term-effects-of-covid19#:%7E:text=People%20with%20long%20COVID%2C%20or,them%20return%20to%20previous%20life.">COVID long haulers</a>” in the United States). Many clinicians use the more scientific descriptor, “<a href="https://www.frontiersin.org/articles/10.3389/fmicb.2021.698169/full">Post-acute sequelae of COVID-19</a>”. </p>
<p>Long COVID is not a new phenomenon. Various post-infection illnesses have been documented in medical literature for decades. </p>
<p>And such conditions bear a striking resemblance to each other. First, an individual is knowingly (or unknowingly) exposed to a pathogen (a virus, bacterium or other microorganism). An acute illness of varying degrees of severity ensues before a partial or complete recovery. But following “recovery”, a broad range of symptoms emerge. And these lead to functional decline. In other words, they stop the sufferer from doing the daily activities they would normally be able to do. </p>
<p>Two of these conditions, <a href="https://www.ahajournals.org/doi/10.1161/circulationaha.112.144501">postural orthostatic tachycardia syndrome</a> and <a href="https://www.cdc.gov/me-cfs/about/index.html">myalgic encephalomyelitis or chronic fatigue syndrome</a>, appear closely related. And their symptoms look a lot like long COVID too. Both seem to affect more women than men and additional immune problems are often present. </p>
<p>These similarities support the theory these illnesses result from a hyper-vigilant immune system. This creates an immune response that inadvertently causes damage to the fragile autonomic nervous system (which regulates the body’s normal functions like heart rate and blood pressure) while attempting to rid the body of the invading pathogen. </p>
<p>However, there are a plethora of <a href="https://www.sciencedirect.com/science/article/abs/pii/S1050173821001225">other theories</a> and more investigation is needed. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/476191/original/file-20220727-17-f0g6xw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="men looks tired on phone at home" src="https://images.theconversation.com/files/476191/original/file-20220727-17-f0g6xw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/476191/original/file-20220727-17-f0g6xw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476191/original/file-20220727-17-f0g6xw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476191/original/file-20220727-17-f0g6xw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476191/original/file-20220727-17-f0g6xw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476191/original/file-20220727-17-f0g6xw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476191/original/file-20220727-17-f0g6xw.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"></a>
<figcaption>
<span class="caption">Post-infection conditions like long COVID seem to affect more women than men.</span>
<span class="attribution"><a class="source" href="https://image.shutterstock.com/image-photo/young-lady-sitting-on-sofa-600w-1991139590.jpg">Shutterstock</a></span>
</figcaption>
</figure>
<h2>An old stigma</h2>
<p>Lack of understanding about these syndromes is reflective of the broad stigmas attached to them – the idea they are psychosomatic and involve the mind and body. </p>
<p>The origin of these stigmas can be traced to a <a href="https://www.mdpi.com/1648-9144/57/1/12">series of publications</a> in the latter half of the 20th century that addressed outbreaks of illnesses after exposure to unknown pathogens. </p>
<p>In 1970, the British Medical Journal published an <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700895/">article</a> authored by two psychiatrists who had reviewed the case notes of 198 patients from the Royal Free Hospital in North London, where an outbreak of an unknown pathogen had occurred 15 years prior. The authors determined the disease had no identifiable organic origin and was therefore likely to be caused by “epidemic hysteria”. This conclusion was partly justified by the high proportion of women among those infected with the illness, the authors said.</p>
<p>Publication of this theory in a preeminent scientific medical journal gave credence to what became an enduring narrative. The result has been a chronic lack of interest and investment in these debilitating invisible illnesses, which can render people unable to work or participate in society. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1551747469947523072"}"></div></p>
<h2>A question of definition</h2>
<p>The burden of these systemic failings now weighs heavy on a society faced with a worldwide tsunami of post-COVID conditions. And it goes some way to explaining the collective shrugging of shoulders by health authorities when it comes to providing answers for sufferers. </p>
<p>Estimates of how many people infected with COVID go on to develop long COVID vary from <a href="https://www.science.org/content/article/what-causes-long-covid-three-leading-theories">5–40%</a>. The large variance is a result of the initial absence of a consistent or unifying set of diagnostic criteria. </p>
<p>Recently the World Health Organization provided a <a href="https://www.who.int/news-room/questions-and-answers/item/coronavirus-disease-(covid-19)-post-covid-19-condition">definition</a> of post-COVID conditions. It includes those with a history of likely or confirmed infection with SARS-CoV-2 (the virus that causes COVID) who experience lingering symptoms for longer than two months, which are unexplained by an alternative diagnosis. </p>
<p>Defining the illness allows clearer characterisation of who is affected. Long COVID is now known to affect any age group and may be <a href="https://health.ucdavis.edu/news/headlines/studies-show-long-haul-covid-19-afflicts-1-in-4-covid-19-patients-regardless-of-severity/2021/03">unrelated</a> to initial infection severity. This evidence prompted the US Centers for Disease Control and Prevention to detail an <a href="https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html">ominous warning</a> about post-COVID health problems that “can last weeks, months, or years”.</p>
<p>Multiple case series and observational studies have now identified a high burden of nervous system dysfunction in long COVID patients. Several studies, including one <a href="https://www.jacc.org/doi/10.1016/j.jacc.2022.03.357">published</a> in the Journal of the American College of Cardiology, demonstrated up to 95% of long-COVID patients also meet the international criteria for postural orthostatic tachycardia syndrome. This <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots">syndrome</a> can cause lightheadedness, brain fog, fatigue, headache, blurred vision, palpitations, tremor and nausea.</p>
<p>These <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6160364/">symptoms</a> often are often incompatible with carrying out normal daily tasks, which explains why <a href="https://www.heartrhythmjournal.com/article/S1547-5271(22)00535-5/fulltext">unemployment and disability</a> are high among postural orthostatic tachycardia syndrome patients, despite their young age. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1539512763281723392"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/reinfection-will-be-part-of-the-pandemic-for-months-to-come-each-repeat-illness-raises-the-risk-of-long-covid-186733">Reinfection will be part of the pandemic for months to come. Each repeat illness raises the risk of long COVID</a>
</strong>
</em>
</p>
<hr>
<h2>The next wave</h2>
<p>Back in March 2021, the American Autonomic Society released a <a href="https://pubmed.ncbi.nlm.nih.gov/33740207/">statement</a> warning of the rising presentations of patients to autonomic specialist referral centres with symptoms of post-COVID postural orthostatic tachycardia syndrome. Of particular concern was the insufficient number of physicians familiar with this type of dysfunction to treat the condition. </p>
<p>This situation is mirrored in Australia where only a handful of specialists are familiar with managing such complex cases. </p>
<p>Contrary to popular medical opinion and widely held beliefs, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5267948/">effective therapies</a> exist for underlying conditions like postural orthostatic tachycardia syndrome, which is prevalent in long COVID. Early intervention is key. Treatment needs to be fully explored and implemented before <a href="https://www.thecareside.com.au/post/australias-disability-support-pension-system-explained/">disability support services</a> can be <a href="https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/do-you-meet-disability-requirements#is-your-impairment-likely-to-be-permanent">sought</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-calculated-the-impact-of-long-covid-as-australia-opens-up-even-without-omicron-were-worried-168662">We calculated the impact of 'long COVID' as Australia opens up. Even without Omicron, we're worried</a>
</strong>
</em>
</p>
<hr>
<h2>Time to listen</h2>
<p>Our health systems need to absolve themselves of past sins and pay attention to the overwhelming voice of the current sufferers of long COVID and those with other post-infection syndromes or invisible illnesses who have endured decades of medical neglect. </p>
<p>Treatment options need to be made available and multidisciplinary teams need to upskill to manage these conditions. </p>
<p>A redefining of what it is to be disabled needs to be explored. Most importantly, these definitions should not be tied to a single cause but to the manifestation of symptoms that culminate in the disability. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/when-is-a-condition-chronic-and-when-is-it-a-disability-the-definition-can-determine-the-support-you-get-183365">When is a condition 'chronic' and when is it a 'disability'? The definition can determine the support you get</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/187531/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Marie-Claire Seeley receives funding from The Australian Government Research Training Program. She is also a recipient of grant funding from the Standing Up To POTS Foundation, USA. Marie-Claire is the founding director of The Australian POTS Foundation which raises funds to further research, advocacy and support for those with postural orthostatic tachycardia syndrome. </span></em></p>Contrary to widely held beliefs, effective therapies exist for post-infection conditions like long COVID. But we’ll need to come to terms with our history to make a difference for sufferers.Marie-Claire Seeley, PhD Candidate, Centre for Heart Rhythm Disorders, University of AdelaideLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1794782022-04-06T02:54:34Z2022-04-06T02:54:34ZFatigue after COVID is way more than just feeling tired. 5 tips on what to do about it<figure><img src="https://images.theconversation.com/files/455686/original/file-20220331-27172-kj80a.jpg?ixlib=rb-1.1.0&rect=13%2C18%2C3069%2C2297&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/SevjX8pf_tQ">Mel Elias/Unsplash</a></span></figcaption></figure><p>People are often surprised by how fatigued they are during a COVID infection. </p>
<p>Fatigue is more than being worn out or sleepy. It’s an excessive tiredness that persists <a href="https://www.healthdirect.gov.au/fatigue">despite resting or good sleep</a>. It’s likely a result of our body’s strong immune response to the virus. </p>
<p>But in some people the fatigue drags on even when the infection is gone. This can be debilitating and frustrating. Simply resting more makes no difference. </p>
<p>Here’s what we know about post-COVID fatigue, and what can help.</p>
<h2>Fatigue or tiredness? What’s the difference?</h2>
<p>The term fatigue can mean different things to different people.
Some people mean their muscles are easily weakened. Walking to the mailbox feels like they have run a marathon. Others describe a generalised exhaustion, whether they are moving or not. People can experience <a href="https://academic.oup.com/brain/article/140/8/2240/3924144?login=false">physical, mental or emotional</a> fatigue, or any combination of these.</p>
<p>The difference between tiredness and fatigue is this: tiredness can get better with enough rest, while <a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/fatigue">fatigue persists</a> even if someone is sleeping and resting more than ever.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/still-coughing-after-covid-heres-why-it-happens-and-what-to-do-about-it-179471">Still coughing after COVID? Here's why it happens and what to do about it</a>
</strong>
</em>
</p>
<hr>
<h2>How big a problem is this?</h2>
<p>Because there is no agreed definition of post-COVID fatigue, it is impossible to give exact numbers of how many people experience it.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1508887460973060099"}"></div></p>
<p>Estimates vary considerably worldwide. <a href="https://academic.oup.com/ofid/article/8/10/ofab440/6367589">One review of 21 studies</a> found 13-33% of people were fatigued 16-20 weeks after their symptoms started. This is a worryingly widespread problem. </p>
<h2>When should I see my GP?</h2>
<p>There are many potential causes of fatigue. Even before the pandemic, fatigue was one of the most <a href="https://www.racgp.org.au/afp/2014/july/fatigue#ref-7">common reasons to see a GP</a>. </p>
<p>Most serious causes can be ruled out when your GP asks about your symptoms and examines you. Sometimes your GP will investigate further, perhaps by ordering blood tests.</p>
<p>Symptoms that should raise particular concern include fevers, unexplained weight loss, unusual bleeding or bruising, pain (anywhere) that wakes you from sleep, or drenching night sweats. </p>
<p>If your fatigue is getting worse rather than better, or you cannot care for yourself properly, you really should seek medical care.</p>
<h2>Is it like long COVID?</h2>
<p>Early in the pandemic, we realised some patients had a cluster of debilitating symptoms that dragged on for months, which we now call long COVID. </p>
<p>Some <a href="https://onlinelibrary.wiley.com/doi/10.1002/acn3.51350">85%</a> of long COVID patients experience fatigue, making it one of the most common long COVID symptoms.</p>
<p>However, people with long COVID have a range of other symptoms, such as “brain fog”, headaches and muscle aches. Patients with long COVID therefore experience more than fatigue, and sometimes don’t have fatigue at all. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/social-media-activism-trucker-caps-the-fascinating-story-behind-long-covid-168465">Social media, activism, trucker caps: the fascinating story behind long COVID</a>
</strong>
</em>
</p>
<hr>
<h2>Is this like chronic fatigue syndrome?</h2>
<p>We knew about <a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs">chronic fatigue syndrome</a>, otherwise known as myalgic encephalomyelitis, <a href="https://pubmed.ncbi.nlm.nih.gov/7978722/">well before COVID</a>. </p>
<p>This often develops after a viral infection (for instance after infection with <a href="https://pubmed.ncbi.nlm.nih.gov/2578266/">Epstein-Barr virus</a>). So, understandably, there has been concern around the coronavirus potentially triggering chronic fatigue syndrome.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-what-is-chronic-fatigue-syndrome-17204">Explainer: what is chronic fatigue syndrome?</a>
</strong>
</em>
</p>
<hr>
<p>There are striking similarities between chronic fatigue syndrome and long COVID. Both involve debilitating fatigue, brain fog and/or muscle aches.</p>
<p>But at this stage, researchers are still <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8180841/">untangling any link</a> between post-COVID fatigue, long COVID and chronic fatigue syndrome.</p>
<p>For now, we know many people will have post-COVID fatigue but thankfully do not go on to develop long COVID or chronic fatigue syndrome.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/455687/original/file-20220331-15-3n0889.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Fatigued woman lying on sofa clutching her head" src="https://images.theconversation.com/files/455687/original/file-20220331-15-3n0889.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/455687/original/file-20220331-15-3n0889.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/455687/original/file-20220331-15-3n0889.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/455687/original/file-20220331-15-3n0889.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/455687/original/file-20220331-15-3n0889.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/455687/original/file-20220331-15-3n0889.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/455687/original/file-20220331-15-3n0889.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">Many people will have post-COVID fatigue but do not not develop long COVID or chronic fatigue syndrome.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/upset-depressed-young-woman-lying-on-1283704306">Shutterstock</a></span>
</figcaption>
</figure>
<h2>What helps me manage my fatigue?</h2>
<p>Expect you or a loved one may develop post-COVID fatigue, <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0240784">regardless of how unwell you or they were</a> during the actual infection. </p>
<p>Vaccines help reduce the risk of post-COVID fatigue by lowering the chance of catching COVID in the first place. Vaccinated people who do catch COVID are <a href="https://www.medrxiv.org/content/10.1101/2022.01.05.22268800v2">less likely to report fatigue</a> and are <a href="https://ukhsa.koha-ptfs.co.uk/cgi-bin/koha/opac-retrieve-file.pl?id=fe4f10cd3cd509fe045ad4f72ae0dfff">less likely to develop long COVID</a>.</p>
<p>However, vaccination is not 100% protective and there are plenty of fully vaccinated people who go on to <a href="https://www.nature.com/articles/d41586-021-03495-2#ref-CR2">develop longer term fatigue</a>.</p>
<p>The evidence for what helps you recover from post-COVID fatigue is in its infancy. However, a few things do help:</p>
<p><strong>1. pace yourself:</strong> adjust the return to normal activities to your energy levels. <a href="https://publicdocuments.sth.nhs.uk/pil4828.pdf">Choose your priorities</a> and focus on what you can do rather than what you can’t</p>
<p><strong>2. return to exercise gradually:</strong> a <a href="https://bjsm.bmj.com/content/54/19/1174?fbclid=IwAR1f15hP9KwmEfqFPTNsIV8vRg6z9SWzLMEVGg2lMvyoj0lhnI_s-A_UrBw">gradual return to exercise</a> may help your recovery, but you may need some support about how to manage or avoid fatigue afterwards. Some therapists – occupational therapists, physiotherapists and exercise physiologists – specialise in this. So ask your GP for a recommendation</p>
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<p><strong>3. prioritise sleep:</strong> rather than feeling guilty about sleeping so much, remind yourself that while you sleep, your body <a href="https://pubmed.ncbi.nlm.nih.gov/21059762/">conserves energy</a> and <a href="https://www.health.qld.gov.au/news-events/news/7-amazing-things-that-happen-to-your-body-while-you-sleep">heals</a>. Disrupted sleep patterns are an unfortunate COVID symptom. Having a strict bedtime, while also resting when you feel tired during the day, is important</p>
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<p><strong>4. eat a range of nutritious foods:</strong> loss of smell, taste and appetite from COVID can make this tricky. However, try to view food as a way of fuelling your body with both energy and the micronutrients it needs to heal. Be careful not to spend a fortune on unproven “remedies” that often look good in small studies, but more robust research finds <a href="https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/expert-answers/chronic-fatigue/faq-20058033">make little difference</a> </p>
<p><strong>5. monitor your fatigue:</strong> keep a diary to monitor your fatigue, and look for a gradual improvement. You will have good days and bad days, but overall there should be a slow trajectory towards recovery. If you are going backwards, get input from a health professional, such as your GP.</p><img src="https://counter.theconversation.com/content/179478/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Natasha Yates is affiliated with the RACGP</span></em></p>Fatigue can drag for weeks, even when the infection is gone, and sleep doesn’t fix it. But there are simple steps you can take to ride it out.Natasha Yates, Assistant Professor, General Practice, Bond UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1647542021-08-16T12:08:30Z2021-08-16T12:08:30ZDeciphering the symptoms of long COVID-19 is slow and painstaking – for both sufferers and their physicians<figure><img src="https://images.theconversation.com/files/415730/original/file-20210811-21-1xw5nik.jpg?ixlib=rb-1.1.0&rect=758%2C100%2C4801%2C3567&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People suffering from long-term effects of COVID-19 face uncertainty about the nature of their symptoms and how long they might last.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/portrait-of-senior-woman-with-face-mask-standing-royalty-free-image/1256056382?adppopup=true"> Halfpoint Images/Moment via Getty Images</a></span></figcaption></figure><p>My first patient that day was a woman in her early 40s, an avid marathon runner who had contracted COVID-19 in March 2020. Now, 13 months later, she noted that she still felt fatigued and short of breath. She also noticed her heart was racing whenever she walked around. She reported having daily headaches, numbness and tingling in her legs, and difficulty with memory, which had affected her work.</p>
<p>This woman was coming in to see me, a <a href="https://www.researchgate.net/scientific-contributions/Allison-Navis-2131988399">neurologist specializing in infectious diseases</a>, for symptoms that we physicians now all-too-commonly know as long, or long-haul, COVID-19.</p>
<p>While we have yet to determine a precise definition for long COVID-19, we typically consider it the persistence or development of new symptoms that last more than <a href="https://doi.org/DOI:%2010.1136/bmj.m3026">four weeks after COVID-19 recovery</a>. Long COVID-19 often involves a constellation of symptoms affecting many parts of the body, but the <a href="https://www.sciencedirect.com/science/article/abs/pii/S0025619621003566">most commonly reported</a> are fatigue, shortness of breath, chest pains, cognitive changes, headaches, sensory changes and pain. </p>
<p>A year and a half into the COVID-19 pandemic, it remains unclear how many people are affected by long COVID-19. Some data suggests <a href="https://doi.org/10.1038/s41591-021-01292-y">4.5% of people</a> infected with COVID-19, or about 1 in 22, will have symptoms beyond eight weeks post-COVID, while other studies point to <a href="https://doi.org/10.1186/s12879-021-06359-2">closer to 49%</a>. Some studies show that among people hospitalized for COVID-19, <a href="https://doi.org/10.1016/S0140-6736(20)32656-8">up to 63%</a> continued to have symptoms – specifically fatigue or muscle weakness – six months later.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Doctors treating elderly man during COVID-19 pandemic" src="https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/415727/original/file-20210811-23-2v6nue.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">People hospitalized with COVID-19 have a far greater chance of developing long COVID-19.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/doctors-checking-patient-in-ward-during-covid-19-royalty-free-image/1296010649?adppopup=true">Morsa Images/DigitalVision via Getty Images</a></span>
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<p>In April 2020, because of the overwhelming number of patients we had, I was pulled from my regular duties as a neurologist and asked to take care of patients on a COVID-19 unit in the hospital. It was my first experience seeing how sick people were and the extent of harm the virus could cause. Given the severity of illness, we were concerned that many people would need long-term care. </p>
<p>So my institution, Mount Sinai, decided to open one of the <a href="https://www.mountsinai.org/about/covid19/center-post-covid-care">first multidisciplinary centers for post-COVID care</a>. I was asked to be the lead clinical neurologist for the center. Since then, I have personally seen several hundred long COVID-19 patients and worked on research studies with the aim of untangling the complexities of <a href="https://doi.org/10.1056/NEJMp2109285">what is happening with the condition</a>.</p>
<h2>The puzzling nature of long COVID-19</h2>
<p>While data on long COVID-19 has <a href="https://doi.org/10.1038/s41591-021-01433-3">started to emerge</a>, less is known about the neurological symptoms. The most common neurological symptoms appear to be <a href="https://doi.org/10.1002/acn3.51350">cognitive changes</a>, including “brain fog” – such as sluggishness and lack of sharpness – as well as headaches, sensory changes, muscle or nerve pain and loss of smell. </p>
<p>We are also seeing many cases of “dysautonomia,” or impaired regulation of the nervous system that controls heart rate and blood pressure – the “fight or flight” part of the nervous system. This condition can lead to sensations of a racing heart and dizziness.</p>
<p>Part of the challenge in understanding long COVID-19 is that many of the symptoms, like fatigue and brain fog, can stem from a variety of conditions from hormonal or metabolic changes to sleep disruption or depression. Trying to determine a direct line between cause and effect in the general public, regardless of COVID-19 infection, often does not lead to clear answers. </p>
<p>Although many long COVID-19 sufferers tend to report the same general symptoms, it is likely that there are different underlying causes leading to these symptoms in different people. For example, <a href="https://doi.org/10.1515/jtim-2016-0016">post-intensive care syndrome</a> (PICS) can occur in anyone who has had a prolonged stay in the ICU, whether or not it was related to COVID-19. PICS is caused by prolonged immobility, mechanical ventilation and metabolic changes that occur during severe illness or infection. The symptoms of PICS often overlap with those of long COVID. </p>
<p>For other symptoms, such as joint or back pain, doctors might be able to pinpoint a cause, like arthritis or a pinched nerve. But the question remains whether that was present before the COVID-19 infection and the infection simply triggered a response that caused the pain to be unmasked, or whether these are new developments in a patient’s body.</p>
<p>What’s more, many diagnostic tests come back normal, or they show common and nonspecific changes. We are not observing widespread strokes, lesions or inflammatory changes on imaging. We may see small changes in blood vessels, known as <a href="https://doi.org/10.1111/j.1749-6632.2010.05758.x">microvascular ischemic changes</a>, but these are extremely common in anyone with high blood pressure, diabetes or even migraines. And tests of the nerves in the arms and legs may show damage in some cases – what we call neuropathy. But that is not always the case, and these can occur regardless of COVID-19 status. This makes it challenging to draw a direct link to COVID-19.</p>
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<a href="https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Screens displaying coronavirus and brain wave research" src="https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=316&fit=crop&dpr=1 600w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=316&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=316&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=398&fit=crop&dpr=1 754w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=398&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/415751/original/file-20210811-27-1rqjqjv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=398&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">Brain imaging has so far yielded inconclusive evidence about what is causing long COVID-19.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/laboratory-equipment-coronavirus-and-brainwave-royalty-free-image/1295324817?adppopup=true">janiecbros/iStock via Getty Images Plus</a></span>
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<h2>What we do know</h2>
<p>This doesn’t mean we are at a complete loss about what is happening. The constellation of symptoms resembles a <a href="https://www.healthline.com/health-news/fauci-warns-about-post-viral-syndrome-after-covid-19">post-viral syndrome</a>, which refers to prolonged symptoms after an infection. Sometimes the infection might be from a known source, <a href="http://dx.doi.org/10.1136/pgmj.64.753.559">such as Epstein-Barr virus (which causes mononucleosis)</a>, but often symptoms follow a general viral illness. </p>
<p>Many people suffering from those conditions will report experiencing some viral-type illness and afterward having persistent fatigue, brain fog and other symptoms that we now often see with sufferers of long COVID-19. The similarity in symptoms suggests that long COVID-19 may not be unique to COVID-19 but rather a general post-infectious process. </p>
<p>Long COVID-19 symptoms can also closely resemble those of <a href="https://www.cdc.gov/me-cfs/index.html">myalgic encephalomyelitis</a>, often known as chronic fatigue syndrome, or another poorly understood disease called <a href="https://doi.org/10.1161/CIRCULATIONAHA.112.144501">postural orthostatic tachycardia syndrome</a>. Both of these are associated with fatigue, dysautonomia and brain fog, among other symptoms. We researchers don’t yet understand what causes either condition. But medications for symptoms, pacing of exercise and physical therapy <a href="https://www.cdc.gov/me-cfs/treatment/index.html">can be helpful</a> for both myalgic encephalomyelitis and long COVID-19.</p>
<h2>Where do researchers go from here?</h2>
<p>I often tell my patients that normal test results don’t mean everything is normal. Our tests may not be sensitive enough, or we are looking at the wrong thing, or we need to develop new tests. <a href="https://doi.org/10.1002/acn3.51350">Neuropsychological evaluations</a> can provide formal information on cognitive functioning and may show changes in memory, attention, language or problem-solving. These results can be helpful in determining rehabilitation strategies for brain fog, but unfortunately, they are not designed to explain why these changes are occurring. </p>
<p>Imaging of the brain, with MRI or CT scans, has so far not provided much information on the underlying cause. It could be that they are not sensitive enough to pick up on small changes; if this is the case, different types of scans – such as functional MRIs – that are either able to get better pictures or look at metabolic changes in the brain might be helpful. However, these are not commonly available outside of research. </p>
<p>Other studies that might enlighten us about the underlying cause of symptoms include bloodwork that might show <a href="https://doi.org/10.1093/cid/ciab611">elevations in autoimmune markers</a> or <a href="https://doi.org/10.1007/s11910-021-01130-1">changes in hormones</a>. The immune system involves a balance of many factors, and impaired regulation of this system after an infection can cause inflammation; this, combined with hormonal or metabolic changes, could potentially lead to long COVID-19 symptoms. While these are not answers, they offer potential leads and further clues for researchers to explore.</p>
<p>To better understand long COVID-19, we need to have a clear picture of who is affected. While communities of color have often been <a href="https://doi.org/10.1001/jamanetworkopen.2020.21892">more severely affected</a> by COVID-19, they are also <a href="https://www.pbs.org/newshour/show/in-medical-research-racial-diversity-is-a-matter-of-life-or-death">likely to be</a> <a href="https://doi.org/DOI:%2010.3390/jcm9082442">underrepresented in studies</a>. </p>
<p>As a result, we researchers need to engage broadly across communities to ensure we fully understand who is affected by long COVID-19, as well as what risk factors might be at play in determining long-term outcomes. Research needs to also focus on gaining a better understanding of the less understood diseases like myalgic encephalomyelitis, as they seem to most resemble what we are seeing.</p>
<p>The ultimate goal in understanding long COVID-19 is to figure out how to prevent it from happening – and prevent as much suffering as we can. While I have seen people get better from long COVID-19, I have many patients who continue to suffer over a year later. It has also affected the health care workers whose goal is to help others heal, but are left with few answers to provide. Until research yields more answers on what could be causing long-COVID, we are left with trying to minimize symptoms and waiting.</p><img src="https://counter.theconversation.com/content/164754/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Allison Navis receives funding from the NIH Loan Repayment Program</span></em></p>Researchers are piecing together clues to better understand the puzzling array of symptoms in those who never seem to fully recover from COVID-19.Allison Navis, Assistant Professor of Neurology, Icahn School of Medicine at Mount SinaiLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1649442021-07-27T02:44:11Z2021-07-27T02:44:11ZWhy governments will have to consider the costs of long COVID when easing pandemic restrictions<figure><img src="https://images.theconversation.com/files/413223/original/file-20210727-21-inoz3x.jpg?ixlib=rb-1.1.0&rect=8%2C0%2C5982%2C4005&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">www.shutterstock.com</span></span></figcaption></figure><p>With governments worldwide under pressure to ease pandemic restrictions as vaccination rates rise and impatience with border restrictions grows, new threats become clearer.</p>
<p>One of the costliest, it is now feared, could be a tsunami of “long COVID” cases.</p>
<p>Long COVID is a serious ongoing illness that follows an acute episode of the disease. It is characterised by extreme fatigue, muscle weakness, post-exertional malaise and an inability to concentrate (“brain fog”), among <a href="https://www.sciencealert.com/new-study-links-more-than-200-symptoms-to-long-covid">many other symptoms</a>. </p>
<p>The focus, therefore, needs to shift towards protecting quality of life as much as saving lives in the first place.</p>
<p>In the UK it is <a href="https://www.independent.co.uk/news/uk/politics/long-covid-boris-johnson-whitty-b1879275.html">reported</a> two million people have experienced long COVID. Around 385,000 having suffered symptoms for a year or more. </p>
<p>The nation’s so-called “Freedom Day” on July 19 went ahead despite expert warnings of soaring infections, especially among younger and unvaccinated people. A further <a href="https://www.independent.co.uk/news/uk/politics/long-covid-uk-neil-ferguson-b1886076.html">500,000 long COVID cases</a> have been predicted during the current wave of infection. </p>
<p>These numbers far outstrip the already staggering <a href="https://coronavirus.data.gov.uk/details/deaths">150,000 deaths attributed to the virus</a> in the UK — and the associated costs will be significant.</p>
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<h2>Putting a price on long COVID</h2>
<p>The social costs of long COVID should not be underestimated. For example, suppose an elderly person contracts COVID-19 and dies, when they might otherwise have lived in full health another five years. A health economist would say their early death has cost society five “quality-adjusted life years” (QALYs). </p>
<p>This is usually expressed as a monetary amount that can then be weighed against the cost of saving that person’s life when deciding on appropriate pandemic protections.</p>
<p>Contrast this with a young person contracting COVID-19 and not dying, but suffering long COVID for 10 years, with their estimated quality of life effectively halved while unwell. </p>
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Read more:
<a href="https://theconversation.com/long-covid-with-one-in-three-patients-back-in-hospital-after-three-months-where-are-the-treatments-164445">Long COVID: with one in three patients back in hospital after three months, where are the treatments?</a>
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<p>They too will have lost an estimated five QALYs — the same social cost as the elderly person who died.</p>
<p>This means if we ease pandemic restrictions on the basis that people are no longer dying, we might be facing equally serious social costs from long COVID. </p>
<p>If long COVID is chronic and much more common than death from COVID (as the current data strongly suggest), the costs rise further. If sufferers of long COVID also face shortened lives, having endured years of debilitation and misery, the costs rise again.</p>
<p>Rough <a href="https://www.nature.com/articles/d41586-021-01392-2">first estimates</a> suggest the overall economic cost of long COVID could be almost half the cost of COVID-related deaths in the UK. </p>
<p>For younger people, however, the social costs of long COVID are estimated to far outstrip those of dying, meaning they will carry a disproportionate burden of the pandemic’s long-term costs.</p>
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<h2>Comparison with chronic fatigue syndrome</h2>
<p>Long COVID is often likened to chronic fatigue syndrome (CFS), which is sometimes called ME (for myalgic encephalomyelitis). Both are characterised as a form of “post-viral fatigue syndrome”, with CFS leaving sufferers <a href="https://www.cdc.gov/me-cfs/about/index.html">seriously debilitated</a> and unable to maintain normal lives — often for years, even decades. </p>
<p>While we have no long-term data to gauge how chronic or serious long COVID might be, we should be mindful that it could be as long-lived as CFS.</p>
<p>Furthermore, long COVID is also <a href="https://www.theguardian.com/australia-news/2021/jun/28/health-systems-should-be-prepared-doctors-brace-for-tsunami-of-long-covid">reported</a> to affect multiple organs in measurable ways, including damage to major organs like the heart and lungs. </p>
<p>Consequently, long COVID could shorten lives, if not end them. This distinguishes it from CFS which – frustratingly, for sufferers wanting to be taken seriously – lacks recognised objective markers. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-mystery-of-long-covid-up-to-1-in-3-people-who-catch-the-virus-suffer-for-months-heres-what-we-know-so-far-161174">The mystery of 'long COVID': up to 1 in 3 people who catch the virus suffer for months. Here's what we know so far</a>
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<h2>Protecting quality of life</h2>
<p>On a personal note, I suffered CFS for 11 years and recovered in 2004. It emerged after a flu-like illness in 1993, which evolved into a constellation of symptoms that defied explanation or treatment. </p>
<p>Recovery required years off work and, with the care and support of family and friends, patient and determined rebuilding of my ability to lead a normal life.</p>
<p>The condition involved huge personal, social and professional costs. I was unable to maintain a normal life, relationships and work commitments. Constant ill health, with no end in sight, was enormously frustrating and miserable. </p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/i-went-from-regular-tv-commentator-on-covid-to-long-covid-sufferer-in-just-a-few-months-158331">I went from regular TV commentator on COVID to long COVID sufferer in just a few months</a>
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<p>It never helped that medical practitioners were either incredulous or believed I was unwell but had no real solutions to offer.</p>
<p>Like CFS, long COVID is a serious condition that cannot be taken lightly. Even if not fatal, it can still seriously affect the sufferer’s quality of life. Hence, policymakers need to consider the social costs of long COVID when deciding when and how to ease pandemic restrictions.</p>
<p>Our pandemic response will need to be as much about protecting quality of life as it has been about saving lives. We need to take serious steps to keep long COVID at bay.</p><img src="https://counter.theconversation.com/content/164944/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Richard Meade 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>With the impact and cost of long COVID becoming ever more apparent, ongoing pandemic responses will need to be about protecting quality of life as much as saving lives.Richard Meade, Research Fellow in Economics, and in Social Sciences & Public Policy, Auckland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1611742021-06-06T20:04:28Z2021-06-06T20:04:28ZThe mystery of ‘long COVID’: up to 1 in 3 people who catch the virus suffer for months. Here’s what we know so far<figure><img src="https://images.theconversation.com/files/403718/original/file-20210601-27-1dm6hfp.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C6720%2C4476&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>Most people who get COVID suffer the common symptoms of fever, cough and breathing problems, and recover in a week or two.</p>
<p>But some people, estimated to be roughly 10-30% of people who get COVID, suffer persistent symptoms colloquially known as “long COVID”.</p>
<p>Why do some people recover quickly, while others’ symptoms continue for months? This question has proved to be one of the most challenging to emerge from the COVID-19 pandemic.</p>
<p>While there’s no definitive answer yet, there are a few leading theories put forward by researchers around the world.</p>
<p>So what have we learned about long COVID, and what is the latest evidence telling us so far?</p>
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Read more:
<a href="https://theconversation.com/i-went-from-regular-tv-commentator-on-covid-to-long-covid-sufferer-in-just-a-few-months-158331">I went from regular TV commentator on COVID to long COVID sufferer in just a few months</a>
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<h2>What is long COVID?</h2>
<p>There’s no universally accepted definition of long COVID because it’s such a new phenomenon. A working definition is that it’s a term used to describe the situation where people experience a range of persistent symptoms following COVID-19.</p>
<p>The most common symptoms we (Louis and Alex) hear from sufferers in our long COVID clinic in Melbourne are fatigue, shortness of breath, chest pain, heart palpitations, headaches, brain fog, muscle aches and sleep disturbance. But it can also include very diverse symptoms like loss of smell and taste, increased worry especially in relation to one’s health, depression, and an inability to work and interact with society. In some of these people, it’s almost as if there’s a process that’s affected every part of their body.</p>
<p>Another feature for many in our clinic is the disconnect between the severity of their initial COVID illness and the development of significant and persisting symptoms during recovery. Most of our patients in the long COVID clinic had a milder illness initially, are often younger than those who’ve been hospitalised, and were healthy and active before getting COVID.</p>
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<p>Regardless of the specific symptoms, many of our patients are concerned there’s persisting infection and damage occurring, along with a fear and frustration that they’re not improving.</p>
<p>So far we haven’t found any specific test to explain post COVID symptoms. This has confirmed our view that in most patients, long COVID symptoms are probably related to a complex interaction of physical and psychological processes that have arisen following the sudden inflammation caused by the COVID infection.</p>
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<h2>How many people have long COVID?</h2>
<p>It’s very difficult to determine what proportion of people who get COVID end up with persistent symptoms. At this stage we don’t know the exact rate.</p>
<p>In our ongoing study of COVID immunity at the Walter and Eliza Hall Institute (WEHI) we found <a href="https://www.abc.net.au/7.30/up-to-a-third-of-people-take-longer-to-recover/13254214">34% of our participants</a> were experiencing long COVID 45 weeks after diagnosis.</p>
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<p>But our study is community-based and not designed to measure the overall prevalence of the condition in the wider population.</p>
<p>The data is still emerging and different sources cite different rates. It depends how the researchers recruited and followed participants, for example, as part of post-discharge follow up or community surveys.</p>
<p>The <a href="https://www.euro.who.int/en/health-topics/health-emergencies/coronavirus-covid-19/news/news/2021/2/new-policy-brief-calls-on-decision-makers-to-support-patients-as-1-in-10-report-symptoms-of-long-covid">World Health Organization says its 10%</a>, while a study from the <a href="https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776560">UK found 30%</a>. The proportion of people affected is likely to be different between countries.</p>
<p>Many doctors are still not aware of long COVID, so many cases may not be recognised and added to studies. Indeed, after some data from our WEHI study <a href="https://twitter.com/abc730/status/1371742910014615554">aired on the ABC’s 7.30 program</a>, more people with ongoing symptoms came forward to join the study, and some didn’t know there was research being conducted or even that the condition existed.</p>
<p>We need a fully-fledged “population study” to determine the approximate rate. This would mean contacting a whole group of people who contracted COVID and seeing how many have ongoing problems at a set time, such as a year later. Doing these studies is difficult, but it would mean we can answer an important question.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/heres-what-we-know-so-far-about-the-long-term-symptoms-of-covid-19-142722">Here's what we know so far about the long-term symptoms of COVID-19</a>
</strong>
</em>
</p>
<hr>
<h2>How can it be treated?</h2>
<p>Treating the condition is challenging given there’s no definitive clinical test to determine if someone has it, and there’s <a href="https://covid19evidence.net.au/#clinical-flowcharts">no standard treatment yet</a>.</p>
<p>People with mild symptoms may not require treatment, but rather just validation and information.</p>
<p>Others with more severe or persistent symptoms need more. By offering clinical care backed by a coordinated team of specialists, multidisciplinary long COVID clinics ensure patients receive the best care available without the endless burden of multiple independent consultations. These clinics use a holistic approach and build knowledge of the best strategies to support recovery. They include teams of specialists such as respiratory physicians, rheumatologists, immunologists, physiotherapists, and in some cases, psychologists and psychiatrists. A graded exercise program is often useful.</p>
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<p>For most people, the outcomes are good. After nine months, half of our patients have returned to close to normal activity and have been discharged from the clinic.</p>
<p>However, there’s a group of patients whose improvement is slower. They’re often young and previously high functioning. They have limited ability to work, exercise and socialise. Their return to work and other activities needs to be carefully managed, and they need to avoid doing too much too quickly.</p>
<p>It’s essential these patients’ persisting symptoms are acknowledged, and that they get support from their family, employer and a multidisciplinary medical team.</p>
<h2>What causes long COVID?</h2>
<p>We don’t know yet why some people get long COVID while others recover a few weeks after being infected.</p>
<p>If it was simply linked to severe COVID then that would give us clues. But it isn’t, as we’ve seen people with mild disease end up with long COVID symptoms, just as we have with people in intensive care.</p>
<p>However, there are some <a href="https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/">front-runner ideas</a> that researchers across the globe have put forward.</p>
<p>This includes the idea that long COVID could be a consequence of people’s immune systems misfiring and working overtime in the wake of infection.</p>
<p>One clue that supports this theory is that some people suffering from long COVID say their <a href="https://www.medrxiv.org/content/10.1101/2021.03.11.21253225v3">symptoms markedly improve after getting a COVID vaccine</a>. This strongly suggests the diverse symptoms of long COVID are directly linked back to our immune system. It’s possible the vaccine might help by <a href="https://elemental.medium.com/how-vaccines-might-improve-long-covid-c1f41c4d7378">redirecting the immune system back on track</a>, by directly activating certain immune cells like T cells (that help stimulate antibody production and kill virus-infected cells) or frontline innate immune cells that correct this immune misfiring. </p>
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<p>Another theory is that, in the bodies of people with long COVID, there’s a small, persistent “<a href="https://www.nytimes.com/2021/03/17/health/coronavirus-patients-and-vaccine-effects.html">viral reservoir</a>” hidden from detection by diagnostic tests, or leftover small viral fragments that the body hasn’t dealt with. These reservoirs are not infectious but may consistently activate the immune system. A vaccine might help direct the immune system to the right spots to mop up the leftover virus. </p>
<p>While we can’t yet say for sure a vaccine will help everyone, there’s <a href="https://medicalxpress.com/news/2021-05-vaccinated-wont-covid-worse.html">no evidence that booting the immune response makes things worse</a>. If anything, it’s likely to make things better.</p>
<p>Or long COVID might a combination of both of these, or many different elements.</p>
<p>The bottom line is we still need more research, as it’s still in its early stages. There’s no cure yet, but we can support and manage sufferers’ symptoms and we encourage everyone to get their COVID-19 vaccine when it’s available to you.</p><img src="https://counter.theconversation.com/content/161174/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Vanessa Bryant receives funding from NHMRC, WHO Unity Fund, Pam and Harold Holmes Foundation, Rae Foundation, MJ Maughan Foundation</span></em></p><p class="fine-print"><em><span>Alex Holmes receives funding from NHMRC. </span></em></p><p class="fine-print"><em><span>Louis Irving 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>While we don’t know exactly what causes it yet, there are a few leading theories put forward by researchers around the world.Vanessa Bryant, Laboratory Head, Immunology Division, Walter and Eliza Hall InstituteAlex Holmes, Associate Professor, Psychiatry, The University of MelbourneLouis Irving, Associate Professor of Physiology, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1468512020-10-05T19:16:01Z2020-10-05T19:16:01ZWhat is post-viral fatigue syndrome, the condition affecting some COVID-19 survivors?<figure><img src="https://images.theconversation.com/files/361523/original/file-20201005-14-xzw32p.jpg?ixlib=rb-1.1.0&rect=51%2C0%2C5699%2C3828&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>For many of us, becoming ill with a virus might put us on the couch for a week or two. It’s frustrating, but after recovering we can generally get back to the things we’re used to.</p>
<p>But for some people, contracting a viral infection can be life-altering. It can cause months, years or even a lifetime of debilitating symptoms that drastically reduce their quality of life.</p>
<p>These symptoms, sometimes called “post-viral fatigue syndrome”, have been reported by sufferers of many viral diseases including influenza, glandular fever, SARS, and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7376333/">now COVID-19</a>.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/heres-what-we-know-so-far-about-the-long-term-symptoms-of-covid-19-142722">Here's what we know so far about the long-term symptoms of COVID-19</a>
</strong>
</em>
</p>
<hr>
<h2>What are the symptoms?</h2>
<p>The <a href="https://icd.who.int/browse10/2019/en#/G93.3">World Health Organisation</a> has classified post-viral fatigue syndrome under the section of “diseases of the nervous system”. It’s defined as:</p>
<blockquote>
<p>…a complex medical condition, characterised by long-term fatigue and other symptoms. These symptoms are to such a degree that they limit a person’s ability to carry out ordinary daily activities.</p>
</blockquote>
<p>Despite the word “fatigue”, the symptoms can be broader and more debilitating than simple tiredness. They can include a sore throat, aches and pains across the body, blood pressure changes, gastric upsets such as irritable bowel syndrome, headaches, sleep disturbance, depression, and dizziness. More severe neurological symptoms can also occur, including new sensitivities or allergic reactions, and burning or prickling sensations in the limbs. Many COVID-19 patients, for example, report a prolonged loss of smell and taste.</p>
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<p>A key feature of the condition is that symptoms can suddenly worsen following <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/">only minimal physical or mental activity</a>.</p>
<p>The symptoms are essentially the same as those of <a href="https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/post-viral-fatigue-a-guide">chronic fatigue syndrome</a>, also called myalgic encephalomyelitis or ME, which is why the WHO places them under the same category of neurological disorders. </p>
<p>If you went to see a doctor, the clinical assessment for <a href="https://academic.oup.com/bmb/article-abstract/47/4/793/289748?redirectedFrom=PDF">post-viral fatigue syndrome</a> would be the same as for chronic fatigue syndrome.</p>
<p>However, not everybody who gets <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/">chronic fatigue syndrome</a> has had a virus, which may explain why both terms persist. There are no current diagnostic tests for post-viral fatigue syndrome, and a diagnosis can only be made based on a series of symptoms.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395">What causes chronic fatigue? What we know, don’t know and suspect</a>
</strong>
</em>
</p>
<hr>
<h2>It’s being reported in COVID-19 survivors</h2>
<p>Post-viral symptoms have been reported following outbreaks of often unexplained viruses in many different countries. One of the <a href="https://pubmed.ncbi.nlm.nih.gov/1794093/">earliest outbreaks</a> recorded was in 1934 in California, where people infected with an unknown virus (thought to be polio) experienced “bursting headaches”, aching limbs and muscle weakness for a prolonged period. Other episodes were recorded in <a href="https://www.thelancet.com/action/showPdf?pii=S0140-6736%2800%2905003-0">Iceland in 1948</a>, and <a href="https://pubmed.ncbi.nlm.nih.gov/14852220/">in Adelaide</a> in 1949.</p>
<p>Although we’re in the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7194715/">early stages of understanding COVID-19</a>, there have been many reports and some <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7376333/">research</a> into post-viral symptoms in sufferers.</p>
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<p>For example, an Italian <a href="https://jamanetwork.com/journals/jama/fullarticle/2768351">study from July</a> found 55% of the hospitalised COVID-19 patients studied suffered at least three debilitating symptoms, two months after their apparent recovery from the initial infection. And a <a href="https://www.bmj.com/content/370/bmj.m3026">UK study</a> in August estimated 10% of those with COVID-19 go on to develop post-viral symptoms.</p>
<p>This is not necessarily surprising, given research on other similar viruses. <a href="https://link.springer.com/article/10.1186/1471-2377-11-37">One Canadian study</a> found 21 health-care workers from Toronto had post-viral symptoms for up to three years after catching SARS in 2003, and were unable to return to their usual work.</p>
<p>A 2006 <a href="https://pubmed.ncbi.nlm.nih.gov/16950834/">Australian study</a> examined 253 people from Dubbo after they caught infections including glandular fever, Q fever, and Ross River virus. It found 11% of cases went on to develop chronic post-viral symptoms that lasted at least six months.</p>
<h2>What causes it?</h2>
<p>The condition, alongside chronic fatigue syndrome, is poorly understood. Researchers are still trying to understand how the body is affected, and for a way to objectively diagnose it.</p>
<p>Any viral infection can apparently trigger the condition, if it leads to long-term complications. It can follow a bout of common influenza, the <a href="https://hhv-6foundation.org/what-is-hhv-6">herpes HHV-6</a> virus, gastric ailments such as <a href="https://www.sciencedirect.com/topics/medicine-and-dentistry/postviral-fatigue-syndrome">Coxsackievirus</a>, or life-threatening conditions like COVID-19, SARS and MERS.</p>
<p>Another potential trigger is <a href="https://www.sciencedirect.com/science/article/pii/S0889159118306251">glandular fever</a>, also called mononucleosis or the Epstein-Barr virus. It <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7235840/">infects more than 90%</a> of the world’s population, but affects mostly people aged 18-25. For some, catching the commonly known “kissing disease” can be the start of a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5770746/">chronic</a> and debilitating illness.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/360720/original/file-20200930-20-1n6houk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Young adult lying on sofa, clutching head, with cup in hand, sick" src="https://images.theconversation.com/files/360720/original/file-20200930-20-1n6houk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/360720/original/file-20200930-20-1n6houk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/360720/original/file-20200930-20-1n6houk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/360720/original/file-20200930-20-1n6houk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/360720/original/file-20200930-20-1n6houk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/360720/original/file-20200930-20-1n6houk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/360720/original/file-20200930-20-1n6houk.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">For some young people, glandular fever can trigger long periods of extreme fatigue.</span>
<span class="attribution"><a class="source" href="https://theconversation.com/a-viral-infection-of-the-mind-the-curious-case-of-encephalitis-lethargica-660">Shutterstock</a></span>
</figcaption>
</figure>
<p>While a virus might be the trigger, scientists don’t yet know the actual cause. One theory is that post-viral fatigue syndrome may result from an overreaction of the body’s immune system, inducing widespread inflammation. This is highlighted by elevated levels of immune messengers called cytokines, which can cross the blood-brain barrier and potentially cause long-term toxic <a href="https://www.clinicaltherapeutics.com/article/S0149-2918(19)30173-0/fulltext">brain changes</a> affecting the whole nervous system.</p>
<p>Almost every part of the body is affected by a virus, and some lay dorment in our system and can be reactivated when our immune system is weakened. A good example of this is shingles, which is a reactivation of the chickenpox virus.</p>
<p>Researchers are also focusing on whether there’s an autoimmune component to the disease, where our immune system provides a rapid response which can inadvertently <a href="https://www.sciencedirect.com/science/article/pii/S1568997218300880#:%7E:text=Myalgic%20Encephalomyelitis%2FChronic%20Fatigue%20Syndrome%20(ME%2FCFS)%20is,CFS%20has%20an%20autoimmune%20etiology">damage healthy tissue</a>, affecting all of the body’s systems such as the heart, digestion, and may even cause diabetes.</p>
<p>Others are looking into why <a href="https://meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-The-Role-of-Mitochondria-in-MECFS-12.07.19.pdf">mitochondria</a>, the structures that generate energy within cells, are affected and may result in fatigue. Researchers are also working toward finding “biomarkers” in the body — objective indicators that can help with diagnosing the condition — though no reliable ones have been located yet.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/chronic-fatigue-syndrome-new-evidence-of-biological-causes-108854">Chronic fatigue syndrome: new evidence of biological causes</a>
</strong>
</em>
</p>
<hr>
<h2>How is it treated?</h2>
<p>Sadly, there is no specific medication or speedy treatment for post-viral fatigue or chronic fatigue syndrome. Treatment options include using a variety of health professionals with <a href="https://ammes.org/treatment-overview/">diverse approaches</a>, typically tailored to the individual.</p>
<p>The most effective current treatment is <a href="https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/post-viral-fatigue-a-guide">total rest</a>. This means relaxing as much as possible, with no mental stimulation such as television or reading. People who have experienced the condition talk about lying in a darkened room for long periods to promote mental and physical rest.</p>
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<p>Other treatments focus on specific symptoms. If pain is the main feature, a rheumatologist might be used, who specialises in managing diseases of the joints, bones and muscles. Psychological treatments such as cognitive behavioural therapy or mindfulness might also help relieve some symptoms.</p>
<p>If you are supporting someone with the condition, it’s important to respect their need for rest and help them through the anxiety of endless tests in their search for answers.</p>
<p>Many patients, particularly with chronic fatigue syndrome, say they aren’t believed and are made to feel like they’re faking their symptoms by both <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/jcop.21984">friends and doctors</a>. The shame and stigma associated with it can be crushing and hurtful and may even result in depression.</p>
<p>And, the experience of getting a virus during a pandemic is <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7390748/">stressful</a>, causing anxiety and even PTSD for some.</p><img src="https://counter.theconversation.com/content/146851/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michael Musker 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>For many of us, becoming ill with a virus might put us on the couch for a week or two. But for some people, contracting a viral infection can cause lifelong debilitating symptoms.Michael Musker, Senior Research Fellow, South Australian Health & Medical Research InstituteLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1254842019-11-26T17:58:13Z2019-11-26T17:58:13ZWomen who suffered child abuse have worse menopause symptoms<figure><img src="https://images.theconversation.com/files/302752/original/file-20191120-474-4opd7a.jpg?ixlib=rb-1.1.0&rect=79%2C46%2C4321%2C2731&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Hot flushes and night sweats are experienced by more than 70 per cent of menopausal women. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Hot flushes or night sweats — called vasomotor symptoms or VMS — might be more than just a nuisance for menopausal women. </p>
<p>A recent study in the journal <em>Menopause</em> shows that <a href="https://www.dx.doi.org/10.1097/GME.0000000000001366">women who have suffered childhood abuse experience more hot flushes while sleeping</a> during menopause than those who haven’t.</p>
<p>Previous research has <a href="https://doi.org/10.1046/j.1525-1497.2003.20918.x">linked childhood abuse to poor mental and physical health in adulthood</a>. This study, however, conducted by Mary Carson and Rebecca Thurston, researchers at the University of Pittsburgh, is one of the first to examine the effects of childhood trauma on the menopause transition. </p>
<p>The results could help inform how patients and health-care providers think about this important, yet poorly understood, area of women’s health.</p>
<h2>Hot flushes and night sweats</h2>
<p>Menopause is defined as the <a href="https://www.menopause.org/for-women/menopause-glossary">time in a woman’s life when she has gone 12 consecutive months without a period</a>, marking the end of menstruation and fertility. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/302748/original/file-20191120-474-vl92uf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/302748/original/file-20191120-474-vl92uf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/302748/original/file-20191120-474-vl92uf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/302748/original/file-20191120-474-vl92uf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/302748/original/file-20191120-474-vl92uf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/302748/original/file-20191120-474-vl92uf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/302748/original/file-20191120-474-vl92uf.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">
<figcaption>
<span class="caption">Frequent hot flushes are associated with a higher risk of cardiovascular disease.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>For most women this is a normal and natural event that happens on average at age 51. Some women may experience menopause earlier by having their ovaries surgically removed, through medical treatments such as chemotherapy, or because of a condition called <a href="https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Adolescent-Health-Care/Primary-Ovarian-Insufficiency-in-Adolescents-and-Young-Women?IsMobileSet=false">premature ovarian insufficiency</a>, thought to be caused by genetic or autoimmune factors.</p>
<p>All menopausal women experience a drop in hormones, mainly estrogen and progesterone, caused by reduced ovarian function. This decrease is associated with the development of hot flushes and night sweats, which are experienced by more than 70 per cent of menopausal women.</p>
<p>A hot flush (sometimes called a hot flash) is a feeling of intense heat, accompanied by sweating and increased blood flow to the skin. While we do not know exactly what causes a hot flush, we know that it involves an <a href="https://www.dx.doi.org/10.1097/GME.0000000000001357">increase in sympathetic nerve activity</a> to the skin and is associated with an <a href="https://www.dx.doi.org/10.1093/cercor/bht155">increase in brain stem activity</a>.</p>
<h2>Higher risk of cardiovascular disease</h2>
<p>In the past, researchers used questionnaires to ask women how many hot flushes or nights sweats they were experiencing. However, self-reported data such as this can be influenced by changes in mood or a person’s ability to remember. </p>
<p>Newer technology allows researchers to measure VMS directly and objectively by way of sensors attached to a woman’s chest. <a href="http://www.vu-ams.nl/vu-ams/">These sensors</a> were used by Carson and Thurston to measure how many hot flushes and sweats women experienced during sleep.</p>
<p>Menopausal women who experience frequent VMS have an overall <a href="https://www.ncbi.nlm.nih.gov/pubmed/29863584">reduced quality of life</a>. They are more likely to suffer from sleep and mood disturbances which can have negative effects on their lives at home and at work. </p>
<p>Newer research also shows that having frequent VMS is associated with a <a href="https://www.eurekalert.org/pub_releases/2019-09/tnam-hfs091219.php">higher risk of cardiovascular disease</a>.</p>
<h2>Impacts of child abuse on adult health</h2>
<p>So what do hot flushes in menopause have to do with a history of childhood abuse? The short answer is that we don’t know for sure.</p>
<p>We do know that a high percentage of women experience childhood abuse. At least <a href="https://www150.statcan.gc.ca/n1/daily-quotidien/170216/dq170216b-eng.htm">28 per cent of Canadian non-Indigenous women and 49 per cent of Indigenous women aged 30 and older</a> experienced physical or sexual abuse before the age of 15, according to a <a href="https://www150.statcan.gc.ca/n1/pub/85-002-x/2017001/article/14698-eng.htm">2015 report from the Canadian Centre for Justice Statistics</a>. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/303675/original/file-20191126-112493-ds4ei4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/303675/original/file-20191126-112493-ds4ei4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=411&fit=crop&dpr=1 600w, https://images.theconversation.com/files/303675/original/file-20191126-112493-ds4ei4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=411&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/303675/original/file-20191126-112493-ds4ei4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=411&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/303675/original/file-20191126-112493-ds4ei4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=516&fit=crop&dpr=1 754w, https://images.theconversation.com/files/303675/original/file-20191126-112493-ds4ei4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=516&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/303675/original/file-20191126-112493-ds4ei4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=516&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The effects of childhood abuse on physical health are slightly stronger for women than men, according to research.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Research led by <a href="http://umanitoba.ca/faculties/health_sciences/medicine/units/chs/faculty_and_staff/4832.html">Tracie Afifi</a>, a child maltreatment researcher at the University of Manitoba, reveals that children who experience any type of abuse in childhood — including being slapped, kicked or punched, witnessing violence between parents or experiencing sexual abuse — have <a href="https://www150.statcan.gc.ca/n1/pub/82-003-x/2016003/article/14339-eng.pdf">increased odds of suffering health problems later in life</a>. These problems include arthritis, high blood pressure, cancer and chronic fatigue syndrome.</p>
<p>Afifi’s team also found a relationship between the types of abuse experienced and the odds of having a health condition as an adult. They found that a person who reported several different forms of abuse was more likely to have health problems later in life than someone who reported fewer types or no abuse. They also found that the effects of childhood abuse on physical health were slightly stronger for women.</p>
<h2>More frequent ‘fight-or-flight’ hormones</h2>
<p>How childhood maltreatment leads to poor physical health in adulthood is not fully understood and probably is caused by many factors. </p>
<p>One theory is that the chronic, high levels of stress and anxiety experienced by children who are abused <a href="https://www.dx.doi.org/10.1016/j.psyneuen.2018.08.004">results in overstimulation of a part of the brain called the hypothalamic-pituitary-adrenal axis (HPAA)</a>, causing the release of “fight-or-flight” hormones more frequently than normal.</p>
<p>Over time, the brain adjusts by increasing the threshold at which this hormone release happens, and this <a href="https://doi.org/10.3390/ijms19040986">dysregulation of the HPAA</a> is associated with an increased risk of mental and physical health problems, including depression, cardiovascular disease and impaired immune function.</p>
<p>We have yet to uncover how childhood maltreatment can lead to more frequent hot flushes in menopausal women. At this time, Carson says a woman’s experiences in childhood can have implications on her health at midlife and that health practitioners should consider talking to their menopausal patients about childhood maltreatment. </p>
<p>The answers, she says, may help inform treatment decisions for women with bothersome hot flushes, but more research is needed to know for sure.</p>
<p>[ <em><a href="https://theconversation.com/ca/newsletters?utm_source=TCCA&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=thanksforreading">Thanks for reading! We can send you The Conversation’s stories every day in an informative email. Sign up today.</a></em> ]</p><img src="https://counter.theconversation.com/content/125484/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rebecca Renkas 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>Menopausal women who were abused as children experience more hot flushes while sleeping than those who were not abused, according to recent research.Rebecca Renkas, Family physician and Global Journalism Fellow at the Dalla Lana School of Public Health, University of Toronto, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1167292019-06-17T19:53:46Z2019-06-17T19:53:46ZExplainer: what is fibromyalgia, the condition Lady Gaga lives with?<p>At least <a href="https://s3.amazonaws.com/rdcms-iasp/files/production/public/Content/ContentFolders/Publications2/PainClinicalUpdates/Archives/PCU03-2_1390265045864_38.pdf">one in ten</a> of us suffer some sort of troublesome, long-term (chronic) pain. But not all have fibromyalgia.</p>
<p>People with fibromyalgia have chronic widespread pain — including musculoskeletal aches, pain and stiffness, and soft tissue tenderness — <a href="https://arthritisaustralia.com.au/types-of-arthritis/fibromyalgia/">in many areas across the body</a>. </p>
<p>This affects other systems like the brain, impacting a person’s ability to concentrate and remember things. People who have fibromyalgia often refer to this as the “<a href="https://www.ncbi.nlm.nih.gov/books/NBK540974/">fibro fog</a>”. It can affect sleep patterns, emotions, and many other aspects of everyday living.</p>
<p>Fibromyalgia is a condition <a href="https://www.womansday.com/health-fitness/wellness/g3329/celebrities-with-fibromyalgia/">singers Lady Gaga and Sinead O'Connor</a>, and actor <a href="https://www.esquire.com/entertainment/movies/interviews/a14768/morgan-freeman-interview-0812/">Morgan Freeman</a> live with.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"907571825294675968"}"></div></p>
<p>So what causes fibromyalgia? How does it differ from other types of chronic pain? How is it diagnosed and treated?</p>
<h2>What causes fibromyalgia?</h2>
<p>When investigations can find no other cause for widespread chronic pain, it’s generally diagnosed as fibromyalgia. </p>
<p>We don’t know exactly what causes fibromyalgia, but <a href="https://www.ncbi.nlm.nih.gov/pubmed/30756137">genetics, environment, hormonal and neural (brain and central nervous system) factors</a> are all believed to play a role. Research indicates genes may be responsible for up to <a href="https://www.ncbi.nlm.nih.gov/pubmed/30486733">50% of susceptibility</a> to the condition. The latest research indicates the body’s <a href="https://www.ncbi.nlm.nih.gov/pubmed/30756137">immune system</a> is involved, too.</p>
<p>An <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6158621/">online survey</a> of 596 people with fibromyalgia found a few common causes reported by participants. Around two thirds of people could relate the start of their symptoms to a specific incident or event, such as a physical injury, a period of sickness that might have involved surgery, or a stressful life event.</p>
<p>Notably, many of those surveyed said they experienced negativity and stigma when trying to explain and authenticate their symptoms to professionals, their families, and their communities.</p>
<h2>Who is affected?</h2>
<p>Fibromyalgia affects <a href="https://www.ncbi.nlm.nih.gov/pubmed/28734619">around 2%</a> of the world’s population. A recent <a href="https://www.ncbi.nlm.nih.gov/pubmed/28743363">literature review</a> showed the frequency of fibromyalgia in the general population was between 0.2 and 6.6%. It’s often reported as <a href="https://www.ncbi.nlm.nih.gov/pubmed/23801009">higher in women</a>, at a ratio of three to one.</p>
<p>The <a href="https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/849253504">World Health Organisation</a> recognised fibromyalgia as a disease in 1994. Since then, doctors <a href="https://www.ncbi.nlm.nih.gov/pubmed/30724039">have debated</a> how fibromyalgia should be diagnosed and who should diagnose it, leading to the so-called “<a href="https://www.ncbi.nlm.nih.gov/pubmed/19342721">fibro wars</a>”. It continues to be controversial.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/hidden-and-unexplained-feeling-the-pain-of-fibromyalgia-48319">Hidden and unexplained: feeling the pain of fibromyalgia</a>
</strong>
</em>
</p>
<hr>
<p>The latest version of the <a href="https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/849253504">International Classification of Diseases</a> says for someone to be diagnosed with fibromyalgia, there needs to be pain in “at least 4 of 5 body regions and is associated with significant emotional distress”. </p>
<p>The <a href="https://www.ncbi.nlm.nih.gov/pubmed/2306288">American College of Rheumatology</a> devised a widely accepted test which looks for 11 points from <a href="https://www.mayoclinic.org/tender-points/img-20007586">18 potential tender points</a> of pain from areas across the body using what’s called the <a href="https://www.rheumatology.org/Portals/0/Files/2010%20Fibromyalgia%20Diagnostic%20Criteria_Excerpt.pdf">widespread pain index</a>. </p>
<h2>How is it treated?</h2>
<p>Everyone experiences treatments differently, and what works for one person <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6191958/">may not work for another</a>. But the main treatments focus <a href="https://www.who.int/medicines/areas/quality_safety/guide_on_pain/en/">on pain relief</a>.</p>
<p>The drugs <a href="https://darujps.biomedcentral.com/articles/10.1007/s40199-019-00257-4">pregabalin and duloxetine</a> work by altering the neurotransmitters in the brain (gamma amino butyric acid and serotonin), and are effective for many people.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-support-groups-can-boost-your-health-and-make-chronic-conditions-easier-to-live-with-91756">How support groups can boost your health and make chronic conditions easier to live with</a>
</strong>
</em>
</p>
<hr>
<p>There are many <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5662432/">other options</a> including medication specifically for pain (analgesics), muscle relaxants (benzodiazepines), or treatments to address nerve or spinal pain (neuropathic treatments).</p>
<p>Many of these medications can have <a href="https://www.ncbi.nlm.nih.gov/pubmed/18443635">side effects</a>, including constipation, or allergic reactions like digestive upset or inflammation. They can also be addictive. Always be honest with your GP about what painkillers you’re taking so they can help you safely manage your pain. </p>
<p>Another common treatment is using a <a href="https://www.nhs.uk/conditions/transcutaneous-electrical-nerve-stimulation-tens/">TENS machine</a> (transcutaneous electrical nerve stimulation). This involves applying pads around the area of pain, or the nerves that might be sending the pain message, and interfering with these using small electrical pulses.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/279486/original/file-20190614-158931-184ree5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/279486/original/file-20190614-158931-184ree5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/279486/original/file-20190614-158931-184ree5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/279486/original/file-20190614-158931-184ree5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/279486/original/file-20190614-158931-184ree5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/279486/original/file-20190614-158931-184ree5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/279486/original/file-20190614-158931-184ree5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/279486/original/file-20190614-158931-184ree5.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">Some patients find therapy with a TENS machine helpful, where pads are placed on the body and electrical pulses applied.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/tens-treatment-physical-therapy-young-man-1151290940?src=vqVpG8b_6LG_S9lZMe7Q6g-1-19&studio=1">from www.shutterstock.com</a></span>
</figcaption>
</figure>
<p>This <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4186747/">effective</a> treatment is thought to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4186747/">increase levels of endorphins</a> produced by the brain and spinal cord to provide pain relief. But the effects may weaken with ongoing use. </p>
<p>It’s important to check with your doctor if TENS treatment is appropriate because it might affect pacemakers or people with epilepsy. </p>
<p>Fibromyalgia can also be treated with physical interventions such as <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6191958/">heat therapy</a>, <a href="https://www.ncbi.nlm.nih.gov/pubmed/29389485">massage</a> and <a href="https://www.ncbi.nlm.nih.gov/pubmed/28637133">vibration therapy</a>. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6365227/">Acupuncture</a> and <a href="https://arthritisaustralia.com.au/wordpress/wp-content/uploads/2017/12/ArthAus_Fibromyalgia_1705.pdf">treatment from a psychologist</a> are other options.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/pain-drain-the-economic-and-social-costs-of-chronic-pain-49666">Pain drain: the economic and social costs of chronic pain</a>
</strong>
</em>
</p>
<hr>
<h2>How about the future?</h2>
<p>In time, we might be able to look for diagnostic <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0198625">immune markers</a> for fibromyalgia in our genetic material to help find who might be at risk of developing the condition, and take preventative action. </p>
<p>Many of the symptoms of fibromyalgia can be found in people who have a condition known as <a href="https://www.ncbi.nlm.nih.gov/pubmed/30795933">myalgic encephalomyelitis</a>, or chronic fatigue syndrome. Our research is currently looking at the blood of people with fibromyalgia and chronic fatigue syndrome to see if there are specific inflammatory markers that may help us understand how these illnesses develop.</p>
<p>If we can understand the interaction of the immune system with pain and inflammation, then we can begin to target treatments more effectively for people living with fibromyalgia.</p>
<hr>
<p><em>If you or someone you know has fibromyalgia, resources and support are available from <a href="https://arthritisaustralia.com.au/wordpress/wp-content/uploads/2017/12/ArthAus_Fibromyalgia_1705.pdf">Arthritis Australia</a> and the US <a href="http://www.fmaware.org/wp-content/uploads/2018/04/10-Things-FM-Patients-Need-to-Know.pdf">National Fibromyalgia Association</a>.</em></p><img src="https://counter.theconversation.com/content/116729/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Tiffany Gill is affiliated with Arthritis SA. </span></em></p><p class="fine-print"><em><span>Michael Musker 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 fibromyalgia live with chronic pain all over their body. And not all treatments work for everyone.Michael Musker, Senior Research Fellow, South Australian Health & Medical Research InstituteTiffany Gill, Senior Research Fellow, University of AdelaideLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1088542018-12-17T16:22:42Z2018-12-17T16:22:42ZChronic fatigue syndrome: new evidence of biological causes<figure><img src="https://images.theconversation.com/files/250999/original/file-20181217-181905-14h3aji.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Flea, the bass player with the Red Hot Chili Peppers, suffered from chronic fatigue syndrome.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/773107435?src=qXRriSfi0adOMG8pdhcM1w-1-59&size=medium_jpg">Christian Bertrand/Shutterstock</a></span></figcaption></figure><p>Chronic fatigue syndrome (CFS) affects up to <a href="https://ammes.org/how-many-people-have-mecfs/">24m people</a>, globally, but little is known about its causes. Our latest study unravels some of this mystery. The results suggest that an overactive immune system may trigger this long-term condition. </p>
<p>People with chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME), experience severe mental and physical tiredness that isn’t alleviated by rest. Some people also experience flu-like symptoms, cognitive impairment and sleep disturbances. </p>
<p>The symptoms overlap with those experienced in immune system disorders, and some infections are known to precede the condition. But measurements of immune function in these patients have proven inconsistent, with some finding evidence of immune activation, while others find none. As a result, the role of the immune system is still unclear. One reason for this may be that we are measuring immune activation too late when the patient is already unwell and visiting the doctor for the first time.</p>
<p>Infections are random events, which makes it difficult to study what happens in response to the infection that leads to CFS (anecdotal evidence suggests many patients recall that their condition started after a viral infection, and studies of <a href="https://academic.oup.com/jid/article/196/1/4/843612">post-infective fatigue syndrome</a> support this. This means we are left with the unanswered question: why is it that some people with common infections go on to develop CFS?</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/250939/original/file-20181217-185234-oju53e.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/250939/original/file-20181217-185234-oju53e.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/250939/original/file-20181217-185234-oju53e.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/250939/original/file-20181217-185234-oju53e.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/250939/original/file-20181217-185234-oju53e.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/250939/original/file-20181217-185234-oju53e.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/250939/original/file-20181217-185234-oju53e.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">CFS is characterised by extreme tiredness.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/1017688225?src=txQpmDJj6U0TjhzsH4Ay8Q-1-5&size=medium_jpg">fizkes/Shutterstock</a></span>
</figcaption>
</figure>
<h2>Triggering an immune response</h2>
<p>For our study, published in <a href="https://www.sciencedirect.com/science/article/pii/S0306453018301963">Psychoneuroendocrinology</a>, we examined 55 patients with hepatitis C who were being treated with interferon-alpha, a drug that triggers a powerful immune response in order to combat the hepatitis C virus. While interferon-alpha is successful at fighting the virus, it can induce a wide range of debilitating side effects, including fatigue, making people receiving this treatment a suitable group to study to learn more about what might cause CFS. </p>
<p>Our approach is novel because it allowed us to take pre-treatment measurements to explore possible risk factors that might have predisposed some of the group to develop a CFS-like illness. This is something that’s almost impossible to achieve in actual CFS without a cohort of thousands to track who does and doesn’t become unwell. </p>
<p>We knew exactly how long the patients would be exposed to the immune trigger (interferon-alpha) and could track them through treatment. Finally, we could follow them up six months later, when they’d fulfilled the criterion of experiencing persistent fatigue for at least six months.</p>
<p>Comparing patients who would go on to experience the CFS-like illness (18 patients) to the rest of the patients who recovered normally, we found higher levels of IL-10, an inflammatory protein, which is part of the coordinated immune response before treatment even began. Once treatment began, those who went on to develop extreme fatigue had much greater increases in IL-10 and IL-6 (another inflammatory protein) compared with those who didn’t develop CFS-like symptoms. </p>
<p>However, as in <a href="https://academic.oup.com/cid/article/45/6/732/284312">previous studies</a>, there was no evidence of continued immune activation six months after treatment when the CFS-like illness was established. This was also true of the group of patients with CFS we used as a comparison group, who were even more severely fatigued, but had lower levels of inflammation than our interferon-alpha treated group six months after treatment – and were in fact no different from another comparison group of healthy volunteers. This suggests that while an exaggerated immune response may be responsible for leading patients on a trajectory to develop CFS, it is no longer there by the time CFS is diagnosed. Rather, this early activation may have an effect on other organs, for example, which lead to biological changes associated with more chronic fatigue and the other symptoms endured by these patients. </p>
<p>While our interferon-alpha treated group did not have a formal CFS diagnosis, it suggests the need for an earlier examination of the inflammatory response, and perhaps a greater focus on those suffering from more severe symptoms at the time of the acute sickness to identify those at risk. And further studies are needed to better understand the biological mechanisms linking the earlier exaggerated immune activation to the persistence of fatigue later on.</p><img src="https://counter.theconversation.com/content/108854/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alice Russell has received additional support from the National Institute of Health Research Collaborative for Applied Health Research and Care (NIHR CLAHRC) </span></em></p><p class="fine-print"><em><span>Carmine Pariante has received research funding from Johnson & Johnson as part of a programme of research on depression and inflammation, and research funding from the Medical Research Council (UK) and the Wellcome Trust for research on depression and inflammation as part of two large consortia that also include Johnson & Johnson, GSK and Lundbeck.</span></em></p>A better understanding of CFS could lead to new treatments.Alice Russell, Clinical Trial Research Manager, King's College LondonCarmine Pariante, Professor of Biological Psychiatry, King's College LondonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1029462018-09-14T10:51:54Z2018-09-14T10:51:54ZFibromyalgia: researchers trying to fathom the causes of this painful condition<figure><img src="https://images.theconversation.com/files/236219/original/file-20180913-177968-f3qvel.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/1174861399?src=RTT5kUUUgpk3StAuc_cV_Q-1-83&size=medium_jpg">TierneyMJ/Shutterstock.com</a></span></figcaption></figure><p>Fibromyalgia is something of a mystery. It can’t be detected with scans or blood tests, yet it causes lifelong pain for millions of people. </p>
<p>The disease mainly affects women (about 75-90% of cases), causing pain all over the body. Because not all healthcare professionals are adept at identifying and diagnosing fibromyalgia, reported rates of the condition <a href="https://www.researchgate.net/publication/242016982/download">vary greatly from country to country</a>. In China, it affects only 0.8% of people, in France around 1.5%, in Canada 3.3%, and in Turkey 8.8%. Estimates in the US range from 2.2% to 6.4%, and in Russia, about 2% of the population is affected. </p>
<p>People with the condition are often diagnosed if they have longstanding muscle pain, bone or joint pain and fatigue. Fibromyalgia can also cause insomnia, “brain fog”, some symptoms of depression or anxiety, as well as a range of other complaints, including irritable bowel syndrome and headache. Many patients are also hypermobile (“double-jointed”), and there is some overlap with chronic fatigue syndrome (also known as ME). </p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/236418/original/file-20180914-177953-1k88o1s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/236418/original/file-20180914-177953-1k88o1s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=566&fit=crop&dpr=1 600w, https://images.theconversation.com/files/236418/original/file-20180914-177953-1k88o1s.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=566&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/236418/original/file-20180914-177953-1k88o1s.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=566&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/236418/original/file-20180914-177953-1k88o1s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=711&fit=crop&dpr=1 754w, https://images.theconversation.com/files/236418/original/file-20180914-177953-1k88o1s.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=711&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/236418/original/file-20180914-177953-1k88o1s.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=711&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many people with fibromyalgia are hypermobile (</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/w/index.php?curid=17256369">MatthewThomasWxm/Wikimedia Commons</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<p><a href="https://acrabstracts.org/abstract/2016-revisions-to-the-20102011-fibromyalgia-diagnostic-criteria/">Guidelines</a> from the American College of Rheumatology make it clear that the diagnosis should be made using defined criteria based on the “widespread pain index” (which scores the number of painful regions out of 19) coupled with a symptom severity scale. The diagnosis also takes fatigue, generalised pain, unrefreshing sleep and cognitive symptoms into account. It doesn’t matter if the patient has another rheumatic disease, they can still be diagnosed with fibromyalgia. </p>
<p>The scoring system, recommended by the American College of Rheumatology, is often used in clinical trials, but in the clinic, most doctors rely on detecting tender points in specific places and on excluding other medical conditions, including rheumatic conditions. Unlike say, rheumatoid arthritis or lupus, the tests do not show clear evidence of inflammation or autoimmunity (when the body’s immune system attacks itself) and scans are normal.</p>
<p>The lack of inflammation or structural abnormality in muscles or joints – aside from making diagnosis difficult – is the main reason there are no widely accepted or effective treatments. In rheumatic diseases, where we understand the mechanisms that underlie the condition, we have the most effective treatments. In rheumatoid arthritis, for example, we know that much of the inflammation is caused by a cell-signalling protein (cytokine) called tumour necrosis factor and that blocking the activity of this protein switches off the disease in most patients. </p>
<p>A number of possible mechanisms have been proposed in fibromyalgia, including abnormal muscle metabolism, reduced levels of steroid hormones such as cortisol, or abnormal small nerve fibres. But these abnormalities aren’t found in all patients with the condition. As such, they can’t be used as part of a diagnostic test, nor can they help develop treatments. </p>
<p>Some experts have suggested that fibromyalgia may be related to abnormalities in the autonomic nervous system – the part of the nervous system that controls bodily functions, such as heart rate and blood pressure – and how the brain responds to pain signals and reacts to external stressors (such as infections). But there is currently no hard evidence to back up this theory.</p>
<h2>Looking for clues</h2>
<p>To fill in some of the gaps in our knowledge about this devastating condition, our research team at Brighton and Sussex Medical School is investigating the potential role of the autonomic nervous system and inflammation in fibromyalgia and chronic fatigue syndrome.</p>
<p>For our study, we have two groups of patients: one with pain as the main symptom and the other with fatigue as the main symptom. We also have matched controls – people without the disease, but otherwise similar characteristics – to make meaningful comparisons. </p>
<p>The study is in two parts. First, we will test the patients’ autonomic nervous system using a tilt-table. This involves tilting the person head downwards to see how well their body adapts to this change in posture by changing heart rate and blood pressure (both of which are monitored during the test). </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/236419/original/file-20180914-177962-111d3o8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/236419/original/file-20180914-177962-111d3o8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=922&fit=crop&dpr=1 600w, https://images.theconversation.com/files/236419/original/file-20180914-177962-111d3o8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=922&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/236419/original/file-20180914-177962-111d3o8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=922&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/236419/original/file-20180914-177962-111d3o8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1158&fit=crop&dpr=1 754w, https://images.theconversation.com/files/236419/original/file-20180914-177962-111d3o8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1158&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/236419/original/file-20180914-177962-111d3o8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1158&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A tilt-table test.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/332960090?src=uQY-b5YXXPiRVOiA_XMXmg-1-0&size=huge_jpg">Blamb/Shutterstock.com</a></span>
</figcaption>
</figure>
<p>Second, we will stimulate patients’ immune systems with a typhoid vaccine (the normal type used in travellers) and perform magnetic resonance brain scans to look for changes in blood flow and also measure the levels of “inflammatory mediators” (the chemicals the body produces in response to stimuli of this type), to see whether these are higher in the fibromyalgia patients.</p>
<p>Our study should, for the first time, help us to address the question of whether there really is an abnormal brain response to inflammation or infection in these patient groups and enable us to explore the relationship between the abnormal functioning of the autonomic nervous system and fibromyalgia and chronic fatigue syndrome. </p>
<p>Fibromyalgia rarely goes away and treatment options are limited. Only by developing a proper understanding of the disease processes underlying this condition will doctors be able to make a clear, positive diagnosis, and most importantly, offer effective therapy.</p><img src="https://counter.theconversation.com/content/102946/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kevin Davies receives funding from AR-UK. </span></em></p><p class="fine-print"><em><span>Jessica Eccles receives funding from Academy of Medical Sciences, National Institute of Health Research, MQ</span></em></p><p class="fine-print"><em><span>Neil Harrison receives funding from the Wellcome Trust, Medical Research Council (MRC), Arthritis Research UK, and Janssen Pharmaceuticals.</span></em></p>A new study offers hope.Kevin Davies, Professor of Medicine, Brighton and Sussex Medical SchoolJessica Eccles, NIHR Clinical Lecturer, Brighton and Sussex Medical SchoolNeil Harrison, Reader in Neuropsychiatry, Brighton and Sussex Medical SchoolLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/943952018-05-24T04:38:34Z2018-05-24T04:38:34ZWhat causes chronic fatigue? What we know, don’t know and suspect<figure><img src="https://images.theconversation.com/files/218719/original/file-20180514-178757-43c6w8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The term chronic fatigue underemphasises the full scope of symptoms sufferers face. </span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/CwIU33KGToc">vladislav muslakov unsplash</a></span></figcaption></figure><p>Around <a href="http://www.ncbi.nlm.nih.gov/pubmed/23576883">200,000 people in Australia</a> suffer from a debilitating illness often branded with the unfortunate name of chronic fatigue syndrome (CFS). I say “unfortunate” because this implies patients are simply tired, run-down, burnt-out or overly stressed.</p>
<p>But myalgic encephalomyelitis, or ME/CFS as it is now more commonly called, is a serious and incapacitating disease that can have a devastating impact on a patient’s life. <a href="http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf">Symptoms</a> include:</p>
<ul>
<li><p>profound and unexplained fatigue for more than six months</p></li>
<li><p>memory or concentration difficulties</p></li>
<li><p>muscle pain (myalgia) and weakness</p></li>
<li><p>joint pain</p></li>
<li><p>sleep disturbances</p></li>
<li><p>flu-like symptoms</p></li>
<li><p>light headedness, palpitations, breathlessness</p></li>
<li><p>headaches</p></li>
<li><p>heightened sensitivity to light and sound</p></li>
<li><p>tender lymph nodes, sore throats</p></li>
<li><p>new sensitivities to food, medicines or chemicals.</p></li>
</ul>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-what-is-chronic-fatigue-syndrome-17204">Explainer: what is chronic fatigue syndrome?</a>
</strong>
</em>
</p>
<hr>
<p>Initially bewildered by their incapacitating fatigue, many ME/CFS patients continue trying to go about their daily lives. But such efforts come at a severe cost. Even small amounts of activity can trigger “crashes” called <a href="http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf">post-exertional malaise</a> that worsen symptoms, sometimes for many days.</p>
<p>Simple activities such as showering, grocery shopping or meeting a friend for coffee become difficult, if not impossible. Sadly, for around <a href="http://www.ncbi.nlm.nih.gov/pubmed/27127189">25% of patients</a>, symptoms are so severe they remain bed-bound or house-bound, and <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/fulltext">suicide</a> risk is elevated.</p>
<p>Most patients face a <a href="https://www.tandfonline.com/doi/abs/10.1300/J092v07n04_02">major challenge</a> getting a diagnosis. One UK study found <a href="http://www.ncbi.nlm.nih.gov/pubmed/15805128">less than half of doctors</a> were confident with the diagnosis or treatment of ME/CFS and <a href="https://www.ncbi.nlm.nih.gov/pubmed/?term=15534161">more than 85%</a> of patients go from doctor to doctor for over two years without a diagnosis.</p>
<h2>What we know</h2>
<p>The underlying causes of ME/CFS have proved difficult to pinpoint. For many patients, blood and pathology testing are entirely normal.</p>
<p>This has led some to suggest ME/CFS is a psychological condition. In 2011, the findings of a <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960096-2/abstract">clinical trial</a> suggested patients <a href="http://www.ncbi.nlm.nih.gov/pubmed/23363640">could recover</a> through psychological therapy (cognitive behavioural therapy or CBT) and graded exercise therapy. These findings have fuelled debate as to whether ME/CFS might be a <a href="http://www.ncbi.nlm.nih.gov/pubmed/21793823">disease of the mind</a>.</p>
<p>But a <a href="https://www.ncbi.nlm.nih.gov/pubmed/25695122">landmark US study</a> examining nearly 10,000 research publications suggested otherwise, concluding that ME/CFS is a serious, chronic, complex and systemic disease.</p>
<p>Criticisms of psychological and exercise therapy for ME/CFS have been widespread, with over 50 published letters in leading scientific journals (<a href="http://www.ncbi.nlm.nih.gov/pubmed/27686885">BMJ</a>, <a href="http://www.ncbi.nlm.nih.gov/pubmed/28805520">Journal of Health Psychology</a>, <a href="https://www.ncbi.nlm.nih.gov/pubmed/29542715">Nature</a>, <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960689-2/fulltext">Lancet</a>) raising serious concerns about the <a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3">robustness of the claims</a>.</p>
<p><a href="https://www.racgp.org.au/your-practice/guidelines/handi/interventions/other/graded-exercise-therapy-for-chronic-fatigue-syndrome/">Australian guidelines</a> continue to recommend exercise and CBT therapies despite the US <a href="https://www.cdc.gov/me-cfs/index.html">Centers for Disease Control and Prevention</a> discontinuing these recommendations.</p>
<p>While exercise can clearly benefit patients with a wide range of illnesses, physical activity can cause a rapid <a href="http://www.ncbi.nlm.nih.gov/pubmed/28216087">deterioration of symptoms</a> in patients with ME/CFS.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/research-check-can-lightning-process-coaching-program-help-youths-with-chronic-fatigue-84769">Research Check: can ‘Lightning Process’ coaching program help youths with chronic fatigue?</a>
</strong>
</em>
</p>
<hr>
<h2>What we don’t know</h2>
<p>There are no laboratory tests available to categorically diagnose someone with ME/CFS. But Australian research is playing a leading role in the discovery of possible diagnostic markers. For example, inflammatory blood proteins such as <a href="http://www.ncbi.nlm.nih.gov/pubmed/28302133">activin B</a> and <a href="http://www.ncbi.nlm.nih.gov/pubmed/21619669">interferon</a> are increased in ME/CFS. Other studies have shown <a href="https://www.ncbi.nlm.nih.gov/pubmed/19567398">metabolic waste products</a> from some gut bacteria accumulate in ME/CFS patients and so may also provide diagnostic information in the future.</p>
<p>Women are <a href="http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf">four times</a> more likely to be diagnosed with ME/CFS than men, but the reason for this is unclear. Also, having a first-degree relative with ME/CFS <a href="http://www.ncbi.nlm.nih.gov/pubmed/21619629">more than doubles the risk</a> of developing the disease, but the role of genetics is not known. </p>
<p>For some, the onset of symptoms is slow. In others, ME/CFS begins with <a href="http://www.ncbi.nlm.nih.gov/pubmed/21756995">infections</a> causing <a href="https://www.ncbi.nlm.nih.gov/pubmed/16950834">glandular fever</a> (infectious mononucleosis), <a href="https://www.ncbi.nlm.nih.gov/pubmed/27279748">respiratory or gastrointestinal illnesses</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/218720/original/file-20180514-178743-1fzdmob.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/218720/original/file-20180514-178743-1fzdmob.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/218720/original/file-20180514-178743-1fzdmob.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/218720/original/file-20180514-178743-1fzdmob.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/218720/original/file-20180514-178743-1fzdmob.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/218720/original/file-20180514-178743-1fzdmob.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=506&fit=crop&dpr=1 754w, https://images.theconversation.com/files/218720/original/file-20180514-178743-1fzdmob.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=506&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/218720/original/file-20180514-178743-1fzdmob.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=506&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">For some, chronic fatigue is preceded by infections such as glandular fever.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
</figcaption>
</figure>
<p>While ME/CFS patients have <a href="https://www.ncbi.nlm.nih.gov/pubmed/21756995">immune disruptions</a> and <a href="https://www.ncbi.nlm.nih.gov/pubmed/28760971">abnormal inflammatory responses</a>, the underlying causes remain elusive. The vicious cycles of tissue damage typical of autoimmune diseases such as multiple sclerosis or lupus don’t seem to occur in ME/CFS.</p>
<p>One theory is that ME/CFS patients have a “chink” in their immunological armour, possibly leading to <a href="http://www.ncbi.nlm.nih.gov/pubmed/21756995">persistent “smouldering” infections</a> and chronic inflammation.</p>
<p>But it’s remarkably difficult to find direct evidence for such ongoing infections in <a href="http://www.ncbi.nlm.nih.gov/pubmed/21756995">most ME/CFS patients</a>. And <a href="http://www.ncbi.nlm.nih.gov/pubmed/23959519">antiviral drugs</a> or <a href="http://www.ncbi.nlm.nih.gov/pubmed/16911783">antibiotics</a> seem to have very modest activity in ME/CFS despite their life-saving activities in many other infectious diseases.</p>
<p>ME/CFS patients also have metabolic defects in the way <a href="https://www.ncbi.nlm.nih.gov/pubmed/28018972">energy</a> is generated in their bodies - pointing to one reason why they rapidly succumb to muscle fatigue during exercise. But whether this metabolic defect is due to immune attack, chronic infection or some other cause is unknown.</p>
<p>With no approved treatments or cures for ME/CFS, more research is urgently needed. So far, clinical trials examining the effects of <a href="https://www.ncbi.nlm.nih.gov/pubmed/9757853">immunosuppressive drugs</a>, <a href="http://www.ncbi.nlm.nih.gov/pubmed/2146875">antibody therapies</a>, <a href="http://www.ncbi.nlm.nih.gov/pubmed/23959519">anti-viral drugs</a>, <a href="http://www.ijcem.com/files/ijcem0065685.pdf">attention deficit hyperactivity disorder therapies</a> and <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(96)91345-8/fulltext">anti-depressants</a> have not led to major improvements. </p>
<p><a href="http://www.ncbi.nlm.nih.gov/pubmed/28111818">Diets and nutritional supplements</a> also seem to provide little help. While some dietary supplements involved in generating <a href="https://www.ncbi.nlm.nih.gov/pubmed/26212172">metabolic energy</a> seem to improve some ME/CFS symptoms, larger and better studies are required.</p>
<p>A <a href="https://www.nature.com/articles/d41586-017-08965-0">reboot of ME/CFS research</a> is now underway. Sufferers are hopeful the recent establishment of a <a href="https://www.nhmrc.gov.au/health-topics/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome">National Health and Medical Research Council ME/CFS Advisory Committee</a> will reinvigorate Australian biomedical ME/CFS research to find new treatments and possibly a cure.</p>
<hr>
<p><em>ME/CFS patients should always consult their medical doctor before taking any medication. More information can be found at <a href="https://emerge.org.au/">Emerge Australia</a>. Anyone seeking support and information about suicide can contact <a href="https://www.lifeline.org.au/?gclid=EAIaIQobChMIyKDF2cPo2gIVkTUrCh2M-gDgEAAYASAAEgIXE_D_BwE">Lifeline</a> on 131 114.</em></p><img src="https://counter.theconversation.com/content/94395/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mark Guthridge 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>Spoiler: there’s a lot more that we don’t know about what causes chronic fatigue.Mark Guthridge, Senior Research Fellow, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/847692017-10-06T00:52:22Z2017-10-06T00:52:22ZResearch Check: can ‘Lightning Process’ coaching program help youths with chronic fatigue?<figure><img src="https://images.theconversation.com/files/188299/original/file-20171002-12107-1b8veoe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">About 1% of youths will suffer from chronic fatigue. </span> <span class="attribution"><span class="source">from www.shutterstock.com</span></span></figcaption></figure><p>Chronic fatigue syndrome involves experiencing a disabling level of fatigue for at least three months, where medical tests fail to show a biological cause. Adults, adolescents, and children can experience chronic fatigue syndrome. About <a href="http://pediatrics.aappublications.org/content/early/2011/04/18/peds.2010-1147">1% of youths develop the syndrome</a>, which greatly affects their mood and decreases school attendance.</p>
<p>A <a href="http://adc.bmj.com/content/early/2017/09/20/archdischild-2017-313375">research article published recently</a> in the journal Archives of Disease in Childhood reported the effects of an intervention called the “Lightning Process”. The study found the Lightning Process added significantly to the effects of the usual treatment in the UK for chronic fatigue syndrome in youths. </p>
<p>The results <a href="https://www.theguardian.com/society/2017/sep/20/controversial-lightning-process-helps-children-with-chronic-fatigue-syndrome-me">immediately attracted media attention</a>. But while the study did show a positive outcome, there are a few limitations that may have affected these results and should be mentioned.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-what-is-chronic-fatigue-syndrome-17204">Explainer: what is chronic fatigue syndrome?</a>
</strong>
</em>
</p>
<hr>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/188915/original/file-20171005-21959-13em8ae.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/188915/original/file-20171005-21959-13em8ae.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/188915/original/file-20171005-21959-13em8ae.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=866&fit=crop&dpr=1 600w, https://images.theconversation.com/files/188915/original/file-20171005-21959-13em8ae.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=866&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/188915/original/file-20171005-21959-13em8ae.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=866&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/188915/original/file-20171005-21959-13em8ae.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1088&fit=crop&dpr=1 754w, https://images.theconversation.com/files/188915/original/file-20171005-21959-13em8ae.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1088&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/188915/original/file-20171005-21959-13em8ae.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1088&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">The Conversation</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<h2>What is the Lightning Process?</h2>
<p>The <a href="https://lightningprocess.com/">Lightning Process</a> is a psychological intervention developed by British osteopath Phil Parker. The 12-hour intervention, provided over three days, was developed for chronic fatigue syndrome, as well as other disorders.</p>
<p>The intervention, which can <a href="http://iancleary.com/faq/">cost up to a few thousand dollars</a>, involves three components that were outlined in the study:</p>
<ol>
<li><p>Instruction on the stress response, on how the mind and body interact, and on how thoughts can have positive or negative effects;</p></li>
<li><p>Group discussion about these topics and about what trainees can change;</p></li>
<li><p>Individual identification of a relevant goal each participant wants to achieve, and the thinking that might help the person achieve the goal, such as walking more.</p></li>
</ol>
<p>The Lightning Process has generated controversy because of claims of its effectiveness in the absence of solid evidence. It has also attracted criticism because it is a psychological intervention for a medical problem, which some sufferers perceive as undermining the severity of their symptoms.</p>
<h2>What exactly did the study find?</h2>
<p>The study was the first randomised controlled trial (meaning half the people in the study were allocated to receive the intervention, and half were not) of Lightning Process for chronic fatigue syndrome in youths aged 12 to 18. It compared the <a href="https://www.nice.org.uk/guidance/cg53">usual treatment in the UK</a>, which involves gradually increasing activity level, to the usual treatment plus 12 hours of Lightning Process.</p>
<p>The results showed better outcomes for the group receiving Lightning Process. These better outcomes involved fatigue, physical functioning, anxiety, and school attendance over periods of six to 12 months. Participants in the usual treatment group also improved significantly over time, but not as much as those who received the Lightning Process.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/188300/original/file-20171002-12138-qk2plj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/188300/original/file-20171002-12138-qk2plj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/188300/original/file-20171002-12138-qk2plj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=366&fit=crop&dpr=1 600w, https://images.theconversation.com/files/188300/original/file-20171002-12138-qk2plj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=366&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/188300/original/file-20171002-12138-qk2plj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=366&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/188300/original/file-20171002-12138-qk2plj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=460&fit=crop&dpr=1 754w, https://images.theconversation.com/files/188300/original/file-20171002-12138-qk2plj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=460&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/188300/original/file-20171002-12138-qk2plj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=460&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Half of the youths in the trial received usual treatment, half had the usual treatment plus the Lightning Process.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
</figcaption>
</figure>
<h2>How well done was the study?</h2>
<p>The study procedures were published prior to the start of the study, making it hard to change methods to produce a desired finding. Participants were assessed using mostly well-validated measures before the intervention and for many months after.</p>
<p>The study had three notable weaknesses in its methods. These weaknesses limit how much can be made of the findings.</p>
<p>First, both the therapists and the clients knew which treatment they received. Hence, the zeal of the therapists or the desire of participants to please the researchers could have helped produce results in favour of the Process. Placebo effects may also have occurred: when participants think they’re getting a new, experimental treatment, placebo effects can lead to real or imagined improvements.</p>
<p>Second, the school attendance reports came from the young people themselves. It would have been more valuable to gather this information from official records.</p>
<p>Third, the Process participants received 12 extra hours of treatment. Hence, it’s not clear whether they improved more due to the content of that extra treatment or due to receiving more treatment.</p>
<h2>What questions might be answered in the future?</h2>
<p>The study showed a general problem in treating chronic fatigue: most of the potential participants with chronic fatigue syndrome who were contacted about entering the study chose not to enter. Also, some who entered the study failed to complete the intervention. No treatment works for someone who does not receive it. Attracting more young people with chronic fatigue to treatment remains a challenge.</p>
<p>The study did not compare Lightning Process with cognitive behavioural therapy (CBT) for chronic fatigue. Of all treatments for chronic fatigue syndrome, CBT has the most evidence of producing positive effects. A meta-analysis of many studies showed that CBT <a href="http://www.sciencedirect.com/science/article/pii/S0272735807001833">tends to lead to moderate benefits</a>. The Process intervention has instructional, cognitive, and behavioural components that are commonly included in CBT. So the Lightning Process could produce similar outcomes, given that many of these components overlap.</p>
<h2>What comes next?</h2>
<p>The study findings are important enough to suggest that more research on the Lightning Process is warranted. But the findings are from a single study, with a single set of researchers. As such, they do not justify a conclusion that someone with the disorder ought to seek this specific treatment. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/188301/original/file-20171002-12149-au897n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/188301/original/file-20171002-12149-au897n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/188301/original/file-20171002-12149-au897n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/188301/original/file-20171002-12149-au897n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/188301/original/file-20171002-12149-au897n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/188301/original/file-20171002-12149-au897n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/188301/original/file-20171002-12149-au897n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/188301/original/file-20171002-12149-au897n.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 shouldn’t change treatment off the back of one study. Especially one with limitations.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
</figcaption>
</figure>
<p>If other studies with different researchers find something similar, then we might consider the intervention empirically supported for use in paediatric chronic fatigue syndrome.</p>
<p>A trial comparing Lightning Process to CBT would be valuable. Parents of young people suffering from chronic fatigue would like solid evidence about which treatment is most likely to help. <strong>- John Malouff</strong></p>
<hr>
<h2>Peer review</h2>
<p>I agree with the Research Check that this study has limitations, but I would perhaps be stronger in my criticisms of the study, as I think there are a few that haven’t been mentioned.</p>
<p>The treatment options the participants received were not standardised, and so because of the variety of treatment options available it’s difficult to evaluate what treatment worked best. All individuals also received a different number of sessions, which would have also impacted on the results from the study.</p>
<p>One point I would also raise is that the criteria used for diagnosing those in the study with chronic fatigue were very broad and did not take into account <a href="http://me-pedia.org/wiki/Canadian_Consensus_Criteria">other criteria</a> that are recognised in <a href="http://www.cfids-me.org/cdcdefine.html">diagnosing</a> <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full">chronic fatigue</a>.</p>
<p>For these reasons, I think more research is needed before we can say this treatment has a benefit. Participants in the study should follow a standardised treatment and should not know which group they belong to in order to avoid a placebo effect. I would also make the suggestion researchers consider using a better method for establishing these individuals do suffer with chronic fatigue. <strong>- Lynette Hodges</strong></p>
<hr>
<h2>Statement from the study author, Esther Crawley</h2>
<p>I did a press briefing because it was important to me that the limitations and implications of this study were clear. For example, it was important to me that children with CFS/ME [chronic fatigue syndrome/myalgic encephalomyelitis] and their parents understood that we have only tested LP [Lightning Process] in addition to specialist medical care. And that we could not say anything about adults with CFS/ME. I wanted it to be clear that many eligible children did not take part and some said this was because they didn’t want LP. I think most of these points were picked up by the press and on the whole, I was pleased with the reporting.</p><img src="https://counter.theconversation.com/content/84769/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>A recent study found a coaching program is effective in treating the symptoms of chronic fatigue. So was the study robust?John Malouff, Associate Professor, School of Behavioural, Cognitive and Social Sciences, University of New EnglandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/748902017-03-23T01:06:02Z2017-03-23T01:06:02ZHow a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma<figure><img src="https://images.theconversation.com/files/161665/original/image-20170320-9132-rd2gxr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Dr. Ellen Wright Clayton, who has worked with those who have Chronic Fatigue Syndrome, spoke to an open committee at the Institute of Medicine in February 2015 about the biomedical nature of CFS. </span> <span class="attribution"><span class="source">Susan Walsh/AP</span></span></figcaption></figure><p>The public relies on scientists to report their findings accurately and completely, but that does not always happen. Too often, researchers announce only their most favorable outcomes, while keeping more disappointing results <a href="http://www.chronicle.com/article/Spoiled-Science/239529">well out of sight</a>. </p>
<p>This phenomenon, first identified by the psychologist <a href="http://psycnet.apa.org/journals/bul/86/3/638">Robert Rosenthal</a> in 1979, is called the “file drawer problem.” Although it is widely recognized – affecting <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1257776/">drug trials</a>, <a href="http://www.psychfiledrawer.org/TheFiledrawerProblem.php">psychology</a> experiments and most other fields – it has seldom been documented, for obvious reasons. Suppressed results are, well, suppressed, and they are usually discovered only by chance.</p>
<p>It was therefore almost unprecedented when a group of patients, at the end of last year, successfully <a href="https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/">unmasked the skewed data</a> behind an <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract">influential British study</a>, first published in Lancet in 2011, of the devastating disease known as Chronic Fatigue Syndrome (sometimes called myalgic encephalomyelitis or ME/CFS). </p>
<p>My interest in this issue is both professional and personal. As a law professor, I have devoted much of my career to the study of judicial ethics, including the problem of implicit biases that can undermine the reliability of both <a href="http://journals.sagepub.com/doi/full/10.1177/1359105317697324">court trials and clinical trials</a>. </p>
<p>I have also been living with ME/CFS for over a decade, so I am acutely attuned to the need for responsible and transparent research on the illness. Unfortunately, the most extensive study of ME/CFS – called the <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract">PACE trial</a> – was deeply flawed from its inception, in ways that the principal investigators have yet to acknowledge. </p>
<h2>‘Dysfunctional’ beliefs all too real for those in pain</h2>
<p>The story began in 2005, when a group of psychiatrists set out to test their theory that ME/CFS is primarily a psychosocial illness, characterized by patients’ <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract">“unhelpful cognitions”</a> and their <a href="http://www.virology.ws/2015/10/21/trial-by-error-i/">“dysfunctional”</a> beliefs that their symptoms are caused by an organic disease. </p>
<p>Under this assumption, they recruited over 600 ME/CFS patients for the PACE trial and randomly divided them into four categories. One group was treated with cognitive behavior therapy (CBT), a form of psychotherapy that addresses patients’ “false perceptions” of their illness, and a second group received graded exercise therapy (GET), which consisted of supervised increases in their activity levels. The other two groups were essentially controls, receiving neither of the treatments under study. </p>
<p>In a 2013 article in <a href="https://www.ncbi.nlm.nih.gov/pubmed/23363640">Psychological Medicine</a>, the PACE team announced its most striking results. This follow-up article claimed that the therapy arms of the study – CBT and GET – had achieved impressive 22 percent recovery rates – not just improvement rates – as opposed to only seven or eight percent in the control arms. </p>
<p>The result was <a href="http://www.sciencemediacentre.org/expert-reaction-to-new-research-into-therapies-for-chronic-fatigue-syndromeme/">enthusiastically promoted</a> in the press, but many patients were suspicious, especially of the GET outcomes, which contradicted their experience of debilitating crashes following the simple movements of daily life.</p>
<p>ME/CFS patients have consistently explained that <a href="http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html">exertion exacerbates</a> their worst symptoms. For many, even moderate exercise can result in a days-long crash, in which they are nearly immobilized by muscle weakness and joint pain. In the U.S., post-exertional relapse has been recognized as the <a href="https://www.ncbi.nlm.nih.gov/pubmed/25695122">defining characteristic</a> of the illness by the Centers for Disease Control, the National Institutes of Health and the Institute of Medicine. </p>
<p>For the PACE investigators, however, the announced recovery results validated their conviction that psychotherapy and exercise provided the key to reversing ME/CFS. </p>
<p>There was just one problem. A <a href="http://www.virology.ws/2015/10/21/trial-by-error-i/">subsequent investigation</a> found that the PACE investigators had <a href="https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?_r=0">changed</a> the standard for recovery midstream, weakening one of the key criteria to the point that a subject could actually have gotten worse in the course of the trial and yet still count as “recovered” following supervised GET. </p>
<h2>Unraveling the mystery</h2>
<p>Here is how it worked, as shown by the investigation: At the outset of the trial, patients were recruited who scored at 65 or lower on a measure called the physical function score, and recovery was defined as achieving a subsequent score of 85 or higher, which indicates a relatively healthy person. </p>
<p>Before the unblinded trial was completed, however, the definition of recovery was <a href="http://journals.sagepub.com/doi/full/10.1177/1359105316675213">reduced to a score of 60</a>, which was below the level that qualified research subjects in the first place. </p>
<p>It was the change in this outcome measure <a href="http://www.senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/">(and several others)</a> that allowed the PACE researchers to declare their favorable outcome for GET. The unimpressive results under the original protocol went <a href="https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255">unpublished</a>, as though they had been stuck in a a figurative file drawer. </p>
<p>When the Psychological Medicine article was published in 2013, members of the patient community immediately pointed out the discrepancy. Because the study had been publicly funded, they sought the underlying data under the U.K.’s Freedom of Information law. The PACE investigators refused to release any of the raw results.</p>
<p>In October 2015, David Tuller of the University of California at Berkeley published a lengthy <a href="http://www.virology.ws/2015/10/21/trial-by-error-i/">expose</a> of the PACE trial, pointing out the jiggered outcome measure, as detailed above, and many other flaws. His report attracted the attention of numerous American scientists who joined an <a href="http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/">open letter</a> seeking an independent review of the PACE data. </p>
<p>Finally, in summer 2016, a British Freedom of Information tribunal <a href="https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255">ordered</a> the PACE team to unlock the file drawer and disclose their raw data. A revelation followed. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/161903/original/image-20170321-5397-srcg1i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/161903/original/image-20170321-5397-srcg1i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=429&fit=crop&dpr=1 600w, https://images.theconversation.com/files/161903/original/image-20170321-5397-srcg1i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=429&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/161903/original/image-20170321-5397-srcg1i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=429&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/161903/original/image-20170321-5397-srcg1i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=539&fit=crop&dpr=1 754w, https://images.theconversation.com/files/161903/original/image-20170321-5397-srcg1i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=539&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/161903/original/image-20170321-5397-srcg1i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=539&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/archives-magnifier-3d-557199121?src=oyv2P5wFiTaNIEWuemcUZA-1-1">From www.shutterstock.com</a></span>
</figcaption>
</figure>
<h2>Exaggerated recovery claims</h2>
<p>A group of patients and scholars reanalyzed the PACE data according to the original determinants and, as suspected, the “recoveries” under CBT and GET all but disappeared. As they reported last December in a peer-reviewed <a href="http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724">medical journal</a>, the recovery rate for CBT fell to seven percent and the rate for GET fell to four percent, which were statistically indistinguishable from the three percent rate for the untreated controls. </p>
<p>Thus, the PACE investigators proved nothing more than a familiar adage among statisticians: If you torture the data, they will confess anything. </p>
<p>Researchers in the U.S. and Australia have recently made great progress toward <a href="https://www.healthrising.org/blog/2017/02/28/biomarker-aussies-chronic-fatigue-syndrome/">identifying biomarkers </a>for ME/CFS, which may lead to an effective medical intervention. Over 100 prominent researchers, clinicians and organizations have called on Psychological Medicine <a href="https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/">to retract </a>the PACE article, although the journal has not yet publicly responded. </p>
<p>Thanks to the original PACE announcement, however, graded exercise is still routinely prescribed throughout the U.S. and the U.K. despite reports that the treatments can cause intolerable pain and relapse. Those who question GET are often told that they must simply exercise more, no matter how badly they crash afterward. </p>
<p>It is bad enough to torture the data, but it is indefensible to torture patients based on manipulated results.</p><img src="https://counter.theconversation.com/content/74890/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Steven Lubet does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A study that suggested Chronic Fatigue Syndrome was more psychological than physical has been debunked. How did the data get doctored?Steven Lubet, Williams Memorial Professor of Law, Northwestern UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/651072016-10-10T19:03:00Z2016-10-10T19:03:00ZGut feeling: how your microbiota affects your mood, sleep and stress levels<figure><img src="https://images.theconversation.com/files/140435/original/image-20161005-15882-1tk9cu6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">There are several possible ways your gut bacteria could affect your brain.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/anitacanita/1438312590/">Ana C./</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span></figcaption></figure><p><em>Our gut does more than help us digest food; the bacteria that call our intestines home have been implicated in everything from our mental health and sleep, to weight gain and cravings for certain foods. <a href="https://theconversation.com/au/topics/gut-series-32096">This series</a> examines how far the science has come and whether there’s anything we can do to improve the health of our gut.</em> </p>
<hr>
<p>The gut microbiota is the community of bugs, including bacteria, that live in our intestine. It has been called the body’s “forgotten organ” because of the important role it plays beyond digestion and metabolism.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/YB-8JEo_0bI?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">What is the human microbiome?</span></figcaption>
</figure>
<p>You might have read about the importance of a healthy gut microbiota for a healthy brain. Links have been made between the microbiota and depression, anxiety and stress. Your gut bacteria may even affect how well you sleep. </p>
<p>But it can be difficult to work out exactly how far the science has come in this emerging field of research. So what evidence is there that your gut microbiota affects your brain?</p>
<h2>How does your gut talk to your brain?</h2>
<p>When you’re healthy, bacteria are kept safely inside your gut. For the most part, the bacteria and your gut live in harmony. (The gut has been known to nurture or even <a href="https://cosmosmagazine.com/biology/chemical-messengers-could-make-poo-transplants-obsolete">control the behaviour</a> of the bacteria for your well-being.) </p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/140404/original/image-20161005-14595-l7eper.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/140404/original/image-20161005-14595-l7eper.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/140404/original/image-20161005-14595-l7eper.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=580&fit=crop&dpr=1 600w, https://images.theconversation.com/files/140404/original/image-20161005-14595-l7eper.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=580&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/140404/original/image-20161005-14595-l7eper.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=580&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/140404/original/image-20161005-14595-l7eper.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=729&fit=crop&dpr=1 754w, https://images.theconversation.com/files/140404/original/image-20161005-14595-l7eper.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=729&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/140404/original/image-20161005-14595-l7eper.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=729&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The gastrointestinal tract.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-376886146/stock-vector-human-digestive-system-digestive-tract-or-alimentary-canal-including-text-labels.html?src=SI78-VNDcYwFNyofukksYg-2-56">Christos Georghiou/Shutterstock</a></span>
</figcaption>
</figure>
<p>So how do the bacteria get their signal out? </p>
<p>The best evidence is that the normal channels of communication from your gut are being hijacked by the bacteria. </p>
<p>The gut has a bidirectional relationship with the central nervous system, referred to as the “<a href="http://www.gutmicrobiotaforhealth.com/en/interview-ted-dinan-learning-gut-brain-axis/">gut-brain axis</a>”. This allows the gut to send and receive signals to and from the brain. </p>
<p>A recent <a href="http://www.pnas.org/content/108/38/16050">study</a> found that the addition of a “good” strain of the bacteria lactobacillus (which is also found in yoghurt) to the gut of normal mice reduced their anxiety levels. The effect was blocked after cutting the vagus nerve – the main connection between brain and gut. This suggests the gut-brain axis is being used by bacteria to affect the brain. </p>
<p>This link was clarified in a <a href="http://www.ncbi.nlm.nih.gov/pubmed/25550456">study</a> where bacterial metabolites (by-products) from fibre digestion were found to increase the levels of the gut hormone and neurotransmitter, serotonin. Serotonin can activate the vagus, suggesting one way your gut bacteria might be linked with your brain.</p>
<p>There are <a href="http://www.ncbi.nlm.nih.gov/pubmed/25103109">many other ways</a> gut bacteria might affect your brain, including via bacterial toxins and metabolites, nutrient-scavenging, changing your taste-receptors and stirring up your immune system. </p>
<h2>How can the gut affect your mental health?</h2>
<p>Two human studies looked at people with major depression and found that bacteria in their faeces differed from healthy volunteers. But it’s not yet clear why there is a difference, or even what counts as a <a href="http://www.jwatch.org/na41241/2016/05/27/characteristics-gut-microbiome">“normal” gut microbiota</a>. </p>
<p>In mouse studies, changes to the gut bacteria from antibiotics, probiotics (live bacteria) or specific breeding techniques are associated with anxious and depressive behaviours. These behaviours can be “<a href="http://www.gutmicrobiotaforhealth.com/en/gut-microbiota-changes-may-responsible-depressive-like-behaviours-mice-alterations-host-metabolism/">transferred</a>” from one mouse to another after a faecal microbiota transplant. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/140439/original/image-20161005-15906-15jx2ll.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/140439/original/image-20161005-15906-15jx2ll.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/140439/original/image-20161005-15906-15jx2ll.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/140439/original/image-20161005-15906-15jx2ll.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/140439/original/image-20161005-15906-15jx2ll.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/140439/original/image-20161005-15906-15jx2ll.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/140439/original/image-20161005-15906-15jx2ll.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">Human studies have found links between mental illness and gut bacteria, but much remains unknown.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-241234900/stock-photo-tram-interior-young-woman-looking-aside-to-other-passengers.html?src=9yzbdDOrs_F5wyc2eRbb0g-1-38">Anna Jurkovska/Shutterstock</a></span>
</figcaption>
</figure>
<p>Even more intriguingly, in a <a href="http://www.ncbi.nlm.nih.gov/pubmed/27491067">study</a> this year, gut microbiota samples from people with major depression were used to colonise bacteria-free rats. These rats went on to show behavioural changes related to depression. </p>
<p>Stress is also likely to be important in gut microbiota and mental health. We’ve known for a long time that stress contributes to the onset of mental illness. We are now discovering bidirectional links between stress and the microbiota. </p>
<p>In rat pups, exposure to a stressor (being separated from their mums) changes their gut microbiota, their stress response, <a href="https://www.sciencedaily.com/releases/2015/07/150728110734.htm">and their behaviour</a>.
Probiotics containing “good” strains of bacteria can reduce their stress behaviours. </p>
<h2>How gut microbiota affects your mood</h2>
<p>Medical conditions associated with changes in mood, such as irritable bowel syndrome (IBS) and chronic fatigue syndrome (CFS), might also be related to gut microbiota. </p>
<p>IBS is considered a “<a href="http://www.ibsclinic.org.au/causes.php?pageId=584&moduleId=186">gut-brain disorder</a>”, since it is often worsened by stress. Half of IBS sufferers also have difficulties with depression or anxiety. </p>
<p>Ongoing <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4734998/">research</a> is investigating whether gut bacteria are one reason for the mood symptoms in IBS, as well as the gastrointestinal pain, diarrhoea and constipation. </p>
<p>Similarly, CFS is a multi-system illness, with many patients experiencing unbalanced gut microbiota. In these patients, alterations in the gut microbiota may contribute to the development of symptoms such as depression, neurocognitive impairments (affecting memory, thought and communication), pain and sleep disturbance. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/140437/original/image-20161005-15896-23ejyd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/140437/original/image-20161005-15896-23ejyd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/140437/original/image-20161005-15896-23ejyd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/140437/original/image-20161005-15896-23ejyd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/140437/original/image-20161005-15896-23ejyd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/140437/original/image-20161005-15896-23ejyd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/140437/original/image-20161005-15896-23ejyd.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">Many people with irritable bowel syndrome and chronic fatigue syndrome have unbalanced gut microbiota.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-123452617/stock-photo-a-man-holds-both-hands-to-his-abdominal-area.html?src=ZAa72DR2SuOfdF-7T42OwQ-2-91">Alice Day/Shutterstock</a></span>
</figcaption>
</figure>
<p><a href="http://www.sciencedirect.com/science/article/pii/S1984006315000632">In a recent study</a>, higher levels of lactobacillus were associated with poorer mood in CFS participants. Some improvements in sleep and mood were observed when patients used antibiotic treatment to reduce gut microbial imbalance.</p>
<p>The exact contributions of stress and other factors such as intestinal permeability (which allows nutrients to pass through the gut) to these disorders are not understood. But the downstream effects seem to be involved in IBS, inflammatory bowel conditions, CFS, depression and chronic pain. </p>
<h2>How our gut affects our sleep</h2>
<p>Our mental health is closely linked to the quality and timing of our sleep. Now evidence suggests that the gut microbiota can influence sleep quality and sleep-wake cycles (our circadian rhythm). </p>
<p>A study this year examined patients <a href="http://www.ncbi.nlm.nih.gov/pubmed/26757840">with CFS</a>. The researchers found that higher levels of the “bad” clostridium bacteria were associated with an increased likelihood of sleep problems and fatigue, but this was specific to females only. This suggests that an unbalanced gut may precipitate or perpetuate sleep problems. </p>
<p>There is emerging evidence that circadian rhythms regulate the gut immune response. The effect of immune cells on the biological clock could provide insights into the possible bidirectional relationship between sleep and the gut. For example, data from <a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0097500">animal studies</a> suggests that circadian misalignment can lead to an unbalanced gut microbiota. But this effect can be moderated by diet. </p>
<p>There is growing concern that <a href="http://www.nature.com/nrn/journal/v6/n5/full/nrn1670.html">disruptions</a> to our circadian timing of sleep leads to a range of health issues, such as obesity, metabolic and inflammatory disease, and mood disorders. This is particularly important for shiftworkers and others who experience changes to their sleep/wake patterns. </p>
<h2>What this means for treatment</h2>
<p>In terms of using interventions directed at the gut to treat brain disorders – so called “psychobiotics” – there is a lot of promise but little clear evidence. </p>
<p>Probiotic (live bacteria) treatments in mice have been shown to reduce cortisol, an important stress hormone, and decrease anxious and depressive behaviours. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/140438/original/image-20161005-15896-mp38k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/140438/original/image-20161005-15896-mp38k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/140438/original/image-20161005-15896-mp38k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/140438/original/image-20161005-15896-mp38k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/140438/original/image-20161005-15896-mp38k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/140438/original/image-20161005-15896-mp38k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/140438/original/image-20161005-15896-mp38k.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">
<figcaption>
<span class="caption">It’s not as simple as opening a tub of yoghurt.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/stone-soup/6849003064/">jules/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>But there are very few studies in humans. A <a href="http://www.ncbi.nlm.nih.gov/pubmed/26370263">recent systematic review</a> of all the human studies showed the majority do not show any effect of probiotics on mood, stress or symptoms of mental illness.</p>
<p>On the plus side, large studies show us that people who eat a balanced diet with all the usual good stuff (fibre, fresh fruit and vegetables) have lower rates of mental illness as <a href="http://www.ncbi.nlm.nih.gov/pubmed/21957462">adults</a> and <a href="http://www.ncbi.nlm.nih.gov/pubmed/21715296">adolescents</a>. </p>
<p>Clearly, diet affects both the gut microbiota and mental health. Research is ongoing to see whether it is a healthy gut microbiota that underlies this relationship. </p>
<p>A healthy gut microbiota is linked to a healthy brain. However there are only a handful of human studies demonstrating real-world relevance of this link to mental health outcomes. </p>
<p>There is still a way to go before we can say exactly how best to harness the microbiota in order to improve brain function and mental health. </p>
<hr>
<p><em>Read the other articles in our Gut series <a href="https://theconversation.com/au/topics/gut-series-32096">here</a>.</em></p><img src="https://counter.theconversation.com/content/65107/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Bertrand receives funding from National Health and Medical Research Council for projects relating to gastrointestinal health and disease</span></em></p><p class="fine-print"><em><span>Amy Loughman receives funding from the National Health and Medical Research Council. </span></em></p><p class="fine-print"><em><span>Melinda Jackson receives funding from The National Health and Medical Research Council. She has previously received funding from Bioscreen Inc. </span></em></p>Links have been made between the community of bacteria in your gut and depression, pain, stress and sleep. So what does the science say?Paul Bertrand, Senior Lecturer in Pharmaceutical Sciences, RMIT UniversityAmy Loughman, Postdoctoral Research Fellow, Deakin UniversityMelinda Jackson, Senior Research Fellow in the School of Health and Biomedical Sciences, RMIT UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/642552016-08-26T16:09:30Z2016-08-26T16:09:30ZTribunal was right to order release of chronic fatigue trial data<figure><img src="https://images.theconversation.com/files/135207/original/image-20160823-30222-1lbhohi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-311956439/stock-photo-judge-gavel-and-scale-in-court-library-with-lot-of-books-in-background.html?src=hkA31hn5irTQgyjeSBagLw-1-6">Piotr Adamowicz/Shutterstock.com</a></span></figcaption></figure><p>After nearly four months deliberation a tribunal has <a href="http://bit.ly/2bklcj0">dismissed an appeal</a> made by Queen Mary University of London (QMUL) against a requirement to release data from the PACE trial – a trial that investigated treatments for chronic fatigue syndrome. This is an important step towards the increased transparency we need for balanced analysis of clinical trials where the methodology is questionable.</p>
<p><a href="http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx">Chronic fatigue syndrome</a> (CFS), otherwise known as myalgic encephalomyelitis, is a disabling condition affecting about <a href="https://www.crn.nihr.ac.uk/blog/news/new-mechronic-fatigue-syndrome-study-looking-for-participants/">one in 500 people</a>. We know almost nothing about its causes, but in some cases it appears to follow infection or involve disturbances to the immune system. The key feature of the syndrome is an intolerance of physical exertion with a worsening of fatigue, sometimes a considerable time after exertion, often referred to as a crash. </p>
<p>Without evidence for a mechanism, treatment is by trial and error. The PACE trial compared cognitive behavioural therapy (CBT), graded exercise therapy (which uses a progressive increase in exercise), self-pacing and standard care (chiefly a leaflet containing advice). PACE was large and participants were randomly assigned to treatment groups but it was unblinded and so not in a true sense controlled. Patients knew which were favoured treatments (CBT and graded exercise) and which were intended to be the dummies (pacing and standard care). The outcome was then measured by questionnaire. </p>
<p>An unblinded trial with a subjective measure for the outcome would not normally be acceptable in medicine and clinical pharmacology, but seems to be in psychiatry. Specifically, the trial was criticised on the basis that chosen measures of treatment success were changed midway through the trial and criteria for recovery overlapped with criteria for being ill enough to enter the trial.</p>
<p>The findings of the PACE trial were published in <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/">The Lancet</a> in 2011. The authors claimed a benefit for CBT and graded exercise, but not for self-pacing. After its publication, several applications were made through <a href="http://www.legislation.gov.uk/ukpga/2000/36/contents">Freedom of Information Act</a> (FOI) legislation to review the raw data to allow re-analysis. </p>
<p>Patients and carers are concerned that graded exercise may make things worse for those with the condition and dislike the message that continued illness is due to false beliefs and unhelpful behaviours (such as avoiding activity), which seem to be the target of CBT. Both patients and scientists are concerned that the trial results were overstated as showing a useful effect of CBT and graded exercise. In particular, a <a href="http://www.ncbi.nlm.nih.gov/pubmed/26521770">follow up study</a> by the PACE group was interpreted as showing continued benefit from these treatments when in fact it shows no difference between groups. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/135604/original/image-20160826-17845-qjtpiv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/135604/original/image-20160826-17845-qjtpiv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=427&fit=crop&dpr=1 600w, https://images.theconversation.com/files/135604/original/image-20160826-17845-qjtpiv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=427&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/135604/original/image-20160826-17845-qjtpiv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=427&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/135604/original/image-20160826-17845-qjtpiv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=537&fit=crop&dpr=1 754w, https://images.theconversation.com/files/135604/original/image-20160826-17845-qjtpiv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=537&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/135604/original/image-20160826-17845-qjtpiv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=537&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The results of CBT were overstated.</span>
<span class="attribution"><a class="source" href="http://www.shutterstock.com/dl2_lim.mhtml?src=Bm9S_yQ7y5Rh-BVEHPhGsg-1-41&id=292678703&size=medium_jpg">Photographee.eu/Shutterstock</a></span>
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<p>Until recently, access to data has been declined, but a recent request under the FOI by Alem Matthees, a CFS sufferer from East Perth, Australia, was approved by the UK’s information commissioner. QMUL appealed but their appeal has now been dismissed by the information rights tribunal.</p>
<h2>Good science doesn’t need protection</h2>
<p>The detail of the <a href="http://bit.ly/2bklcj0">tribunal report</a> is interesting; it reveals the complexity of data protection and the arguments on both sides. QMUL claimed that releasing data would breach patient confidentiality, might jeopardise follow up studies and damage the reputation of the college. Matthees pointed out, and the commissioner agreed, that since the QMUL team had already made the data available to chosen colleagues the first argument was unconvincing. It was unclear why access by other researchers to the data would threaten follow up studies. Matthees argued that QMUL would be more likely to damage its reputation by losing patient trust.</p>
<p>The core of the dispute appears to be that the QMUL authors feel they are entitled to protect their study from those who might wish to discredit their interpretation. Hopefully, we are moving towards a consensus that there is no such entitlement. If scientific interpretation is poor it deserves no protection. If it is good it needs none.</p>
<p>The essence of the response from the information commissioner was that the QMUL authors had overstated their case in terms of likely damage from release of personal data. The authors and one witness painted a picture of irresponsible animal rights-type activists who might deliberately target trial patients as part of a political smear campaign. Essentially the authors were claiming that because those asking for data were patients or others associated with them they should not be considered responsible enough to have access to anonymised data. In the end they had to admit they had no grounds for this view.</p>
<p>From my perspective the importance of this decision is in emphasising that everyone has the right to access to scientific data and to express their opinion. Confidentiality of patient identity is essential but should not be used as a smokescreen. If scientists knew when they entered data into workbooks or spreadsheets that everyone would be entitled to scrutinise them the quality of data collection and interpretation might improve a great deal.</p><img src="https://counter.theconversation.com/content/64255/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jo Edwards 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>University’s reasons for not releasing trial data are groundless.Jo Edwards, Professor emeritus, UCLLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/172042014-01-09T04:29:27Z2014-01-09T04:29:27ZExplainer: what is chronic fatigue syndrome?<figure><img src="https://images.theconversation.com/files/35772/original/s4zx7nn5-1385008450.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Chronic fatigue is often misunderstood by the general public and medical professionals alike</span> <span class="attribution"><span class="source">Flickr / Arne Coormans</span></span></figcaption></figure><p>Chronic fatigue syndrome, or myalgic encephalomyelitis, is a highly debilitating, but often misunderstood, disorder. </p>
<p>As its name suggests, the illness is characterised by profound fatigue, muscle and joint pain, and impaired memory and concentration. Sufferers also experience impaired cardiovascular function, gut disorders, and sensory dysfunction, such as noise intolerance and problems with balance. </p>
<p>The symptoms tend to be so deliberating and severe that chronic fatigue patients often experience family and social breakdown and isolation. Many cases can continue for months or years, and often symptoms don’t improve with rest.</p>
<p>Chronic fatigue syndrome was trivialised for years due to the lack of scientific evidence supporting its diagnosis, and dismissed as the “yuppie flu”. Sufferers continue to endure the stigma of a condition that is often poorly recognised by the medical community and treated with scepticism by family, friends, and co-workers. </p>
<p>All this despite the fact that chronic fatigue is thought to have a global prevalence rate of <a href="http://www.cfids-cab.org/cfs-inform/Reviewcfs/bassi.etal08.pdf">0.2 to 2.6% </a>. A <a href="http://www.mecfs.org.au/what-is-meorcfs">conservative estimate</a> puts the number of people in Australia with chronic fatigue disorder at 180,000. </p>
<p>Chronic fatigue predominantly affects young adults between the ages of 20 and 40 years. The female-to-male diagnosis ratio is six-to-one but why the disorder is more prevalent in women than men is unknown. </p>
<p>Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure and no prescription drugs have been developed specifically for chronic fatigue syndrome, making it very difficult to treat. Symptoms can also vary over time. </p>
<p>People with chronic fatigue syndrome should closely monitor their health in conjunction with their doctor to create an individualised treatment program that best meets their needs. This program should be based on a combination of therapies that address symptoms, coping techniques and ways to manage normal daily activities.</p>
<p>It’s crucial that we discover a biological basis for chronic fatigue so we can start working out ways to better treat the condition. </p>
<p>Diagnosis is a <a href="http://books.google.com.au/books?id=fuW7l-4lgv8C&pg=PA27&lpg=PA27&dq=Lloyd+1992+annual+costs+of+cfs&source=bl&ots=BM-FxX0fjF&sig=GqXov6ay1zLYXh6mZjcI28QKCJM&hl=en&sa=X&ei=DVKuUo2HOIL-iAf-44CwBQ&ved=0CC4Q6AEwAA#v=onepage&q=Lloyd%201992%20annual%20costs%20of%20cfs&f=false">lengthy and expensive process</a>, as a host of other diseases that share symptoms have to be excluded. Given that diagnosis is notoriously difficult, finding unique markers of the illness has been a focus of research for over 20 years. </p>
<p>Researchers have observed <a href="http://www.translational-medicine.com/content/9/1/81">significant differences</a> between the immune cells of chronic fatigue sufferers and healthy people. This discovery could potentially lead to the identification of chronic fatigue biomarkers (examinable biological indicators that can be used for diagnosis). </p>
<p>This, in turn, could lead to the development of tests that detect chronic fatigue rather than having to rely on reported symptoms.</p>
<p><a href="http://chronicfatigue.stanford.edu/">Other researchers</a> have identified a strong association between chronic fatigue syndrome and a deregulated (or ill-functioning) immune system, which might point to the underlying mechanism of the disorder. </p>
<p>In sufferers of chronic fatigue, the researchers observed that the function of “natural killer cells” — immune cells that have the ability to kill off infected cells in the body – was reduced. This means they’re unable to remove pathogens effectively and efficiently. </p>
<p>And Australian researchers have <a href="http://www.omicsonline.org/immune-abnormalities-in-patients-meeting-new-diagnostic-criteria-for-chronic-fatigue-syndromemyalgic-encephalomyelitis-2155-9929.1000152.pdf">discovered changes</a> in a number of other immune cells that are required to fight viruses in people with chronic fatigue. </p>
<p>In particular, they’ve have identified specific changes to the gene that controls these cells, and the receptors that activate them. This suggests there is a possible explanation as to why these cells are able not functioning effectively and efficiently.</p>
<p>Collectively, these results provide the first steps towards a system for the early diagnosis of chronic fatigue. They may also provide evidence that these changes in immune function are involved in the cause of the disorder. </p>
<p>But while the findings have the potential to bring relief to many chronic fatigue sufferers, research is still in its preliminary stages. At this juncture, researchers are testing these potential biomarkers against a number of other diseases to ensure they’re unique to chronic fatigue syndrome patients.</p>
<p>With a better understanding of the biological causes of chronic fatigue, we can not only tackle the symptoms of chronic fatigue, but the stigma as well.</p><img src="https://counter.theconversation.com/content/17204/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sonya Marshall-Gradisnik receives funding from Mason Foundation, Edward P Evans Foundation and the Queensland Government -Smart State Initiatives.</span></em></p>Chronic fatigue syndrome, or myalgic encephalomyelitis, is a highly debilitating, but often misunderstood, disorder. As its name suggests, the illness is characterised by profound fatigue, muscle and joint…Sonya Marshall-Gradisnik, Chief researcher, School of Medical Science, Griffith UniversityLicensed as Creative Commons – attribution, no derivatives.