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Found 46 results
  1. News Article
    Scientists have found biological signatures in the blood of people with myalgic encephalomyelitis (ME), a breakthrough that could lead to the first reliable test for the debilitating condition. ME, also known as chronic fatigue syndrome (CFS), affects an estimated 400,000 people in the UK. Symptoms can include pain, brain fog and extremely low energy levels that do not improve with rest. These often become dramatically worse after even minor physical effort, a phenomenon known as post-exertional malaise. There is no cure and the cause is unknown. A diagnosis is typically made by ­ruling out other illnesses, a process that can take years. The new study, led by ­researchers from Edinburgh University, may mark a turning point. Professor Chris Ponting, of the university’s Institute of Genetics and Cancer, said: “For so long people with ME/CFS have been told it’s all in their head. It’s not. We see [it] in their blood. “Evidence of a large number of replicated and diverse blood biomarkers that differentiate between ME/CFS cases and controls should dispel any lingering perception it is caused by deconditioning and exercise intolerance.” Read full story (paywalled) Source: The Times, 20 June 2025 Related reading on the hub: Exploring the barriers that impact access to NHS care for people with ME and Long Covid
  2. News Article
    More than 150,000 more people in England are living with chronic fatigue syndrome (CFS) than was previously estimated, according to a study that highlights the “postcode lottery” of diagnosis. The research, published in the peer-reviewed journal BMC Public Health, involved researchers from the University of Edinburgh analysing NHS data from more than 62 million people in England to identify people who had been diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome or post-viral fatigue syndrome. The data was examined by gender, age and ethnicity, and grouped by different areas of England. ME, also known as chronic fatigue, is a long-term condition with its main symptoms being extreme fatigue, brain fog, and issues with sleep. The condition’s key feature is known as post-exertional malaise, which is a delayed dramatic worsening of these symptoms following minor physical effort. There is currently no diagnostic test or cure for the disease and its causes are unknown. The findings showed that the lifetime prevalence of chronic fatigue for women and men in England may be as high as 0.92% of the population for women, and 0.25% for men. This is equivalent to about 404,000 people overall. The study also revealed stark ethnic inequalities relating to chronic fatigue diagnoses rates. White people with ME in England were almost five times more likely to be diagnosed with the condition than other ethnic groups. People from Black and Asian backgrounds were least likely to be diagnosed with the condition, with rates between 65% and 90% lower than their white counterparts. Read full story Source: The Guardian, 22 April 2025 Related reading on the hub: Exploring the barriers that impact access to NHS care for people with ME and Long Covid
  3. Content Article
    People with Myalgic Encephalomyelitis (ME/CFS; sometimes referred to as chronic fatigue syndrome) experience poor health-related quality of life and only rarely recover. ME/CFS has no curative treatment, and no single diagnostic test. Public health and policy decisions relevant to ME/CFS require knowledge of its prevalence and barriers to diagnosis.  The research, published in BMC Public Health, analysed NHS data from more than 62 million people in England to identify people who had been diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome or post-viral fatigue syndrome. The data was examined by gender, age and ethnicity, and grouped by different areas of England. The findings showed that the lifetime prevalence of chronic fatigue for women and men in England may be as high as 0.92% of the population for women, and 0.25% for men. This is equivalent to about 404,000 people overall.
  4. Community Post
    For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? A recent blog on the hub from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid. If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences: Have there been times where you delayed or were unable to access the care you needed due to these or other challenges? Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare? What would make the biggest difference to you to make care more accessible? Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care? Please share your experiences. You can post anonymously below or you can sign up to the hub and become a member which will allow you to post on other topics too. Sign up is free and easy to do.
  5. Content Article
    A comprehensive infographic with expert information from Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) to help primary healthcare professionals with diagnosing ME/CFS. It contains vital information regarding suspecting ME/CFS, diagnosis, differential diagnoses, key symptoms, investigations, and information relating to NHS specialist referrals.
  6. News Article
    It was in a coroner’s court last year, at the inquest into the death of his 27-year-old daughter Maeve, that Sean O’Neill heard the most dispiriting words. The coroner, Deborah Archer, said she was going to write a prevention of future deaths (PFD) report, highlighting to the NHS and other agencies areas of concern. Then she added: “I write a lot of these reports, and often nothing happens.” Maeve died after suffering for half her life with myalgic encephalomyelitis (ME), a post-viral condition that is not well understood, inadequately researched and which doctors often refuses to recognise or treat. Sean's aim was to use the media to highlight what happened to Maeve and raise awareness of the plight of the hundreds of thousands of people whose lives are limited by ME and similar conditions. His second aim was to convince the coroner to write a PFD report and point out areas in healthcare, medical research, education and training where action could be taken that might prevent further such deaths. The written responses to Archer’s PFD report have been underwhelming. The public health minister, (the recently resigned) Andrew Gwynne, promised an NHS delivery plan. NHS England said it would do a “stocktake” of ME services, even though there had been evidence at the inquest that such services are scarce, and in the cases of severely ill patients, “non-existent”. The Medical Research Council said it “recognises the unmet clinical need for better diagnosis and treatments for people living with ME” but defended its record to date. In 2023 there were more than 1,600 inquests that had been open for more than two years; often these are the most difficult cases, yet bereaved families face being repeatedly traumatised by every preliminary hearing and legal letter. As in Maeve’s case, the best hope for a family is that a PFD report points the way to reform. A coroner is not allowed to recommend, only suggest. Yet only rarely are these reports written. Those coroners who do write reports often find their suggestions ignored. Just under 40% of the 5,532 PFD reports published since 2013 have received no responses. There is no other section of the legal system in greater need of reform. There should be a national coronial service, more PFD reports should be written and lessons should be disseminated. What is the point of investigating avoidable deaths — of making bereaved families relive their trauma, of spending millions of public pounds — unless we are prepared to learn how to avoid similar fatal errors? Read full story (paywalled) Source: The Times, 23 February 2025
  7. Content Article
    More information about "Exploring the barriers that impact access to NHS care for people with ME and Long Covid"
    For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? This blog from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences. What is ME and why is accessing care difficult? ME (myalgic encephalomyelitis, sometimes referred to as ME/CFS) is a complex, chronic condition affecting multiple body systems.[1] Symptoms include debilitating cognitive dysfunction and post exertional malaise (PEM)—the exacerbation of symptoms following exertion, which can sometimes lead to a long-term deterioration—the cardinal symptom of ME. Patients with ME have one of the worst qualities of life of any disease: lower than various forms of cancer, multiple sclerosis or chronic renal failure.[2] The most severely affected patients are reliant on full-time care, sometimes becoming unable to speak or swallow, and may require hospital care to avoid dehydration and malnutrition. Since 2020 at least two million people in the UK have been affected by Long Covid. Approximately half of those affected meet the criteria for ME (though not all have been formally diagnosed), alongside those who have developed other long-term health issues following Covid infections.[3] For people with ME and Long Covid, accessing healthcare, whether for these or other conditions, can be challenging. PEM means that it can be difficult to receive care without risking a deterioration in symptoms, especially when reasonable adjustments are not made to minimise the exertion involved. A lack of knowledge, misunderstanding and stigma around the conditions exacerbate the issue, sometimes making patients reluctant to seek care and clinicians unlikely to understand the adjustments that are needed. Together, these and other barriers mean that people with ME and Long Covid may avoid, delay or be completely unable to seek the care they need, creating risks for patient safety. Difficulties accessing care at home A 2023 public consultation highlighted failures in the health service that included the accessibility of NHS care for people with ME—particularly for housebound or bedbound patients.[4] This was echoed by a 2024 #ThereForME survey of over 300 people with ME and Long Covid (and their carers).[5] Two-thirds of people responding to our survey said that the NHS had not been there for them when they needed it. The overall accessibility of care was highlighted as a core concern. Housebound patients answering our survey reported struggling to get access to home visits for monitoring and routine screenings or even remote/phone appointments. Patients reported delaying or avoiding seeking care as a result, or in some cases turning to private care as the only option to facilitate routine investigations. Learnings from care for other conditions can show how similar barriers have been addressed—for example, progress in care for people with learning disabilities.[6] Hospital systems and environments People with ME and Long Covid often experience difficulties navigating energy-intensive NHS systems and hospital environments. For many, the process of arranging and receiving medical care may go well beyond their limited energy envelope. This includes challenges like inflexible booking systems, appointments that are changed or cancelled at short notice, long journeys to medical appointments or needing to coordinate with multiple referrals and clinicians. Patients may delay seeking care, even in emergencies, due to the toll that a busy hospital environment is likely to take on their chronic symptoms. Particularly in A&E and inpatient care, busy waiting rooms and hospital wards may exacerbate sensitivity to noise, light and movement. Patients may be unable to sit upright in waiting rooms for long periods of time without their symptoms being exacerbated. While reasonable adjustments are key to accessibility,[7] and the 2021 NICE Guideline for ME/CFS outlines some adjustments that may be needed,[1] knowledge of the Guideline is limited in the NHS and the majority of NHS Trusts and Integrated Care Boards are not implementing it.[8] More widely, limited knowledge about ME, and similarly Long Covid,[9] means that patients don’t receive treatment that is sensitive to their symptoms—and, crucially, that avoids exacerbating them—because clinicians lack basic knowledge. People with ME and Long Covid, who are often particularly vulnerable to infections, may also avoid seeking healthcare due to concerns about acquiring infections. Many people with Long Covid report deterioration after Covid reinfections,[10] as the pandemic continues far from the headlines and with few measures in place to prevent airborne transmission. This may also impact the ability of family carers to access healthcare themselves, fearing acquiring an infection which could set back their loved one’s health. Trauma in healthcare Traumatic experiences in healthcare also play a role. Many patients with ME and Long Covid have experienced feeling dismissed or disbelieved, sometimes discouraging them from seeking care in future. The 2024 #ThereForME survey documented multiple cases of patients who said that, due to such experiences, they would be reluctant to seek NHS care even if experiencing life-threatening symptoms, expressing a sentiment that they would ‘rather die at home’ than seek healthcare in an emergency.[5] ME is significantly more common among women,[11] meaning that experiences of stigma linked to the condition overlap with gendered experiences of healthcare,[12] including how pain among women is routinely dismissed. Sharing your experiences We hope this blog has shone a spotlight on some of the challenges people with ME and Long Covid face when accessing care. If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences: Have there been times where you delayed or were unable to access the care you needed due to these or other challenges? Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare? What would make the biggest difference to you to make care more accessible? Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care? We’ll be collating the experiences shared and exploring what can be done about it. You can share your experience by posting in the Comments field below or join our conversation in the Community area of the hub. References NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic794457 fatigue syndrome: diagnosis and management. NICE guideline [NG206], 29 October 2021. Falk Hvidberg M, et al. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLOS One, 2015; https://doi.org/10.1371/journal.pone.0132421. Dehlia MA, Guthridge MA. The persistence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis. J Infection, 2024. Department of Health and Social Care, Department for Education and Department for Work and Pensions. Consultation outcome. Improving the experiences of people with ME/CFS: interim delivery plan, 9 August 2023. ThereForME. Building an NHS that’s there for Long Covid and ME, July 2024. Anderton M. Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress. Patient Safety Learning, 17 July 2023. Brar P. Diagnostic safety: accessibility and adaptations–a (un)reasonable adjustment? Patient Safety Learning, 19 September 2024. Action for M.E. Patchy, Misunderstood and Overlooked Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in England Freedom of Information Findings Report, May 2023. Patient Safety Learning. Long Covid: Information gaps and the safety implications. Patient Safety Learning, 7 June 2021. WHO. Knocked back by COVID-19 reinfection – the experience of Abbie, a British nurse living with long COVID. World Health Organization, 30 November 2023. DecodeME. Initial findings from the DecodeME questionnaire data published, 24 August 2023. Anonymous. One hour with a women's health expert and finally I felt seen. Patient Safety Learning, 7 November 2024.
  8. News Article
    A decision to cancel a planned update of a Cochrane systematic review of exercise therapy for chronic fatigue syndrome has met with anger from a group advising the review and the patient community. The decision has reignited calls for the review, which includes studies only up to May 2014, to be withdrawn for being outdated and misleading. The review recommends exercise therapy to treat myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), concluding that this “probably has a positive effect on fatigue in adults compared to usual care or passive therapies.” However, this treatment approach is controversial and has been criticised by patient groups who say that it can make symptoms worse. Guidelines from the National Institute for Health and Care Excellence, published in 2021, specifically advise against graded exercise therapy. Guidelines from the US Centers for Disease Control and Prevention also state that exercise therapy is not a cure for ME/CFS and that standard exercise recommendations for healthy people can be harmful for people with ME/CFS. Read full story (paywalled) Source: BMJ, 27 January 2025
  9. News Article
    The NHS is carrying out an assessment of myalgic encephalomyelitis (ME) services across England after the death of Maeve Boothby O’Neill, whose case highlighted a lack of understanding and inability to care for sufferers of the illness. The National Institute for Health and Care Excellence (Nice), which provides advice to improve healthcare, is also re-examining its guidance on feeding support for people with severe ME. Education of medical professionals about patients, who have often been stigmatised, is also being ramped up. Andrew Gwynne, the health minister, has committed to better research “with the aim of better understanding the causes, identifying new treatments and improving patient outcomes”. It comes after the landmark inquest of Boothby O’Neill, who died at the age of 27 in 2021 after suffering from ME since her teenage years. Her case highlighted misunderstandings of ME, also known as chronic fatigue syndrome, and the lack of treatment available for severe sufferers. Read full story (paywalled) Source: The Times, 5 December 2024
  10. Content Article
    More information about "Call for an inquiry into the persistent and historical gaps in care for those with ME and Long Covid - A letter to the Health and Social Care Select Committee (#ThereForME, 28 October 2024)"
    This is letter from #ThereForME calls for an inquiry into the persistent and historical gaps in care for those with ME and Long Covid. It is co-signed by 28 organisations and smaller initiatives and has been sent to the Chair of the Select Committee, Layla Moran MP. Patient Safety Learning are one of the signatories of this letter.  The letter recommends that an inquiry is undertaken by the Health and Social Care Committee with a remit to investigate: Current gaps in care for ME and Long Covid, and their connections to historic approaches to infection-associated chronic conditions (including NHS care and research funding). Economic impacts, including the relationship between growing economic inactivity in the UK’s working age population and the lack of meaningful service provision for people with ME and Long Covid. Recommendations to strengthen future care and research for people with ME, Long Covid and other infection-associated chronic conditions - and how this can inform wider pandemic preparedness (including public health prevention strategies to mitigate the future health burden of infection-associated chronic conditions). Attitudes towards and assistance for patients with ME and Long Covid in society, including benefits provision, disability assistance, social care and guidance for settings including workplaces and education.
  11. Content Article
    Lyme disease is a tick-borne, bacterial infection that causes chronic fatigue, headaches, swollen joints and fever, among other symptoms. Following the actor Miranda Hart's having recently shared that she has been living with the effects of Lyme disease for years, Zoë Beaty looks at the issues surrounding diagnosis and treatment of the condition. She outlines why some doctors believe the condition does not exist, or that people with ME/chronic fatigue syndrome are being misdiagnosed with it. The lack of research and evidence around the condition means that many of the people who live with its symptoms—a large proportion of which are female—struggle to access effective treatment.
  12. Content Article
    Myalgic encephalomyelitis (ME) was recognised as a neurological disease by the World Health Organization in 1969. However, in the 1970s some researchers labelled it as hysteria, leading to the US Centers for Disease Control to rename it as chronic fatigue syndrome (CFS). The name was changed to ME in 2015 to help legitimise the symptoms and experiences of patients. Still, the medical stigma persists. Conditions such as ME disproportionately affect women, whose symptoms and concerns are often ignored by doctors. Many patients with Long Covid face similar challenges. Since 2020, an estimated 1.8 million people in the UK have developed Long Covid after a Covid-19 infection. The debilitating condition is known to cause more than 200 symptoms. Coincidentally, Long Covid shares many symptoms with ME/CFS, including chronic pain, exhaustion, brain fog and exercise intolerance. Many patients with complex chronic illnesses are dismissed by doctors who don’t believe in their symptoms or disease even when it leaves patients bedridden. Now, people with complex illnesses such as ME and Long Covid are taking the hunt for treatments into their own hands
  13. Content Article
    In this guest post, Michael A. Osborne, Professor of Machine Learning at Oxford's Department of Engineering Science looks at how the medical community is failing to explore the links between Long Covid and ME/Chronic Fatigue Syndrome (ME/CFS). He describes the symptoms common to both conditions and highlights the historic lack of funding and attention ME/CFS research and treatment has received.
  14. News Article
    Long Covid is no respecter of youth, health or fitness. It afflicts more women than men but it can strike anyone down, including people whose initial infection seemed mild, or even asymptomatic. In some cases, long Covid could mean lifelong Covid. The effects can be horrible. Among them are lung damage, heart damage and brain damage that can cause memory loss and brain fog, kidney damage, severe headaches, muscle and joint pain, loss of taste and smell, anxiety, depression and, above all, fatigue. We should all fear the lasting consequences of this pandemic. Long Covid is shorthand for a range of conditions. Some scientists divide them into three broad categories, others into four. Of these, one seems to ring a bell. It’s a cluster of symptoms that bear a strong similarity to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). This is a devastating condition that affects roughly a quarter of a million people in the UK, and is often caused, like long Covid, by viral infection. Among the common symptoms of ME/CFS are extreme fatigue that is not relieved by rest, and “post-exertional malaise”: even mild physical or mental effort can make patients extremely unwell. Many sufferers are confined to their home or even their bed, with their working life, social life and family life truncated. There is, so far, no diagnostic test and no cure. Yet ME/CFS has been disgracefully neglected by science and medicine. The NHS is now setting up specialist clinics to treat long Covid. But already, apparent mistakes are being made. Without the necessary caveats, the NHS recommends steadily increasing levels of exercise for people suffering from post-Covid fatigue. But as ME/CFS patients with post-exertional malaise know, this prescription, though it sounds intuitive, could be highly damaging. We need massive research programmes into both long Covid and ME/CFS, coupled with better information for doctors. Read full story Source: The Guardian, 21 January 2021
  15. News Article
    As more people suffer lasting symptoms from Covid including fatigue, ME patient advocates fear they will get bad advice, Based on current estimates, about 10% of COVID-19 patients develop lasting symptoms, one of the most common being fatigue. The underlying mechanism is still unclear, but possible explanations include reduced oxygen supply to tissues caused by heart or lung damage, or muscle weakness from prolonged bed rest. However, some doctors are increasingly concerned about the overlap between long Covid and another largely virus-triggered illness: “It’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS),” said the US’s top public health official, Dr Anthony Fauci, in July. “They just don’t get back to normal energy or normal feeling of good health.” Like people with ME/CFS, many long-Covid patients report headaches, brain fog, sleep problems, a racing heart, joint and muscle pain and fatigue. Some also experience a relapse of fever, muscle pain and exhaustion, known as “post-exertional malaise”, if they exercise beyond their capabilities. “There are so many similarities between long Covid and ME/CFS it leads me to believe the underlying pathology is probably the same – except that long Covid is presenting as an epidemic, whereas ME/CFS has presented in a very sporadic way, and by no means in such large numbers in such a short space of time,” said Dr William Weir, a consultant in infectious diseases with a special interest in ME. Read full story Source: The Guardian, 19 November 2020
  16. News Article
    A controversial exercise technique used to manage chronic fatigue syndrome is no longer being recommended by National Institute for Health and Care Excellence (Nice). The decision to stop recommending graded exercise therapy (GET) – which involves incremental increases in physical activity to gradually build up tolerance – represents a crucial win for patient advocates who have long said the practice causes more harm than good. Patient groups have argued that the use of exercise therapy suggests that those with chronic fatigue syndrome (also known as ME) have no underlying physical problem but are suffering symptoms due to inactivity. “We have been so widely dismissed and had our suffering at the hands of this condition constantly diminished by the inappropriate and damaging guidance/notion that we can simply exercise or think our way out of a physical illness none of us asked for nor deserve,” said ME patient Glen Buchanan. Chronic fatigue syndrome is thought to affect about 250,000 people in the UK and has been estimated to cost the economy billions of pounds annually. One in four are so severely affected they are unable to leave the house and, frequently, even their bed. Read full story Source: The Guardian, 10 November 2020
  17. Content Article
    Physios for M.E are a group of physiotherapists in the United Kingdom with a special interest in myalgic encephalomyelitis (ME) The information provided on this website is meant to inform and signpost helpful resources. Any treatment for a person with ME should always be individualised, monitored and constantly evaluated.
  18. Content Article
    Produced by the ME Action Network, this is a form that patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) can complete for subsequent use by hospital staff. It aims to provide a better understanding of their symptoms and any medications they may be taking when admitted either for planned treatment, such as an operation, or in an emergency.
  19. Content Article
    In this blog, Julie Rehmeyer discusses the impact that flawed research results had on patients with chronic fatigue syndrome.
  20. Content Article
    This article lists some of the top chronic pain and illness blogs on the internet, with a short description of each one.
  21. Content Article
    The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy. This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm. The authors of this study surveyed the NHS–affiliated myalgic encephalomyelitis/chronic fatigue syndrome specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms. The study found that clinics were highly inconsistent in their approaches to the issue of treatment-related harm. They placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff. Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment. The authors recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.
  22. Content Article
    Back in April the ME Association (MEA) became aware of an increasing number of people who had been ill with COVID-19 and were not improving, even after several weeks. Almost all had been self-managed at home with an illness that mostly varied from mild to moderate in severity, but not requiring hospital admission. Most had debilitating fatigue, sometimes with continuing COVID-19 symptoms involving the lungs or heart in particular. Some had symptoms that are more consistent with the sort of post viral fatigue syndromes that may precede ME/ CFS. Five months on and we are now in a situation where some people are being given a diagnosis, or a possible diagnosis, of post COVID-19 ME/CFS. Back in April the ME Association produced an MEA guide to post COVID fatigue and post COVID fatigue syndromes. This information and guidance has now been fully updated to cover all the developments that have occurred since then. 
  23. News Article
    The National Institute for Health and Care Excellence has issued an unprecedented implementation statement1 setting out the practical steps needed for its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)2 to be implemented by the NHS. Such statements are only issued when a guideline is expected to have a “substantial” impact on NHS resources, and this is thought to be the first. It outlines the additional infrastructure and training that will be needed in both secondary and primary care to ensure that the updated ME/CFS guideline, published in October 2021, can be implemented. The statement is necessary because the 2021 guideline completely reversed the original 2007 guideline recommendations that people with mild or moderate ME/CFS be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Instead the guideline recommends that any physical activity or exercise programmes should only be considered for people with ME/CFS in specific circumstances and should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms. It also says a physical activity or exercise programme should only be offered on the basis that it is delivered or overseen by a physiotherapist in an ME/CFS specialist team and is regularly reviewed. Although cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS, the guideline recommends it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness. Read full story Source: BMJ, 16 May 2022
  24. Content Article
    The results of this study, published in the Journal of Translational Medicine, confirm previous work that demonstrated an abnormal response to exercise in fatigued ME/CFS patients.
  25. Content Article
    A significant number of people, who may or may not have been acutely unwell with COVID-19, are experiencing a prolonged and debilitating recovery at home. Symptoms and experiences of care seem to vary greatly among this group, sometimes known as the COVID-19 ‘long-haulers’. Many are finding comfort and reassurance through online communities, set up by and designed for patients who are struggling to get back on their feet.

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