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Found 31 results
  1. Content Article
    In this Byline Times article, the family of 18 year-old Mollie McAinsh describe her treatment in an NHS hospital after they sought help for her life-limiting ME. Millie developed the condition after a viral illness in 2019 and became increasingly unwell. When she was no longer able to feed herself, she was admitted to the Royal Lancaster Infirmary, where her family believed she would have a feeding tube fitted and then be sent home. However, while in hospital her mother was banned from visiting and Millie was sectioned under the Mental Health Act. The article looks at the issues facing people with severe ME and examines the history of how the illness has been perceived, which many believe has resulted in the wrong treatment being offered to ME patients.
  2. Content Article
    Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in children and young people is a little-understood condition which significantly impacts education, development and quality of life. This study in BMJ Paediatrics Open used data from a population-wide surveillance study to explore the screening investigation, referral and management of suspected cases of paediatric severe ME/CFS. The authors found that full investigation is frequently incomplete in children and young people with suspected severe ME/CFS. Recommendations for referral and management are poorly implemented—in particular the needs of children and young people who are unable to leave their home might be poorly met.
  3. 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
  4. News Article
    New guidance for doctors discouraging them from recommending exercise and cognitive behavioural therapy for chronic fatigue patients is not evidence based, according to researchers. A study questions the National Institute for Health and Care Excellence (NICE) review process for this guideline for clinicians dealing with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) patients and its use of scientific standards in considering the evidence. One of the study’s lead authors, Prof Trudie Chalder from the psychiatry department at King’s College London said: “The decision to change the guideline has had a direct effect on doctors’ and therapists’ ability to treat patients. Services are no longer able to provide a full range of evidence-based therapeutic interventions. “This could have a devastating impact on people’s lives in that they will no longer be able to access the treatment that could help them the most.” ME, also called CFS, is a long-term condition believed to affect about 25,000 people in the UK, which has a wide range of symptoms including extreme tiredness, muscle pain, mental fogginess and insomnia. Read full story Source: The Guardian, 11 July 2023
  5. News Article
    A mother has said an NHS hospital failed to offer her daughter adequate pain relief in a pattern of poor treatment that left the teenager suicidal. Ella Copley, 17, from Tingley, West Yorkshire, has suffered from ME (myalgic encephalomyelitis), sometimes known as chronic fatigue syndrome, for seven years. She has been in Leeds General Infirmary since March, when she was taken there by ambulance with an infection later diagnosed as sepsis. Her mother, Joanne McKee, 49, said the treatment Ella had received “feels like neglect and abuse”. She has posted videos on social media of the teenager screaming in pain when medicine is given by nasogastric tube. “I don’t think they believe that her pain is real at all,” she said. McKee said doctors had told Ella she was “hypersensitive”, and suggested that she stroke a piece of material against her skin as part of a desensitisation programme. “I have just never, ever known anything so dismissive,” McKee said. In an interview with Times Radio, she added: “No one has any understanding of her conditions. That really is the issue." The charity Action for ME has written a letter to the hospital’s chief executive raising concerns over Ella’s case. In it, Sonya Chowdhury, chief executive of the charity, said she was “aware of several other situations that bear similarity with Ella’s illness and care”. Questions have been raised over the treatment of Maeve Boothby-O’Neill, who died in October last year. Her death will be the subject of an inquest in Exeter next month. Read full story (paywalled) Source: The Times, 18 July 2022
  6. News Article
    A proposed exercise trial for Long Covid is being criticised by some of the patients the government-funded researchers want to study. The trial is part of the Researching COVID to Enhance Recovery (RECOVER) initiative, funded by the US government for $1.15 billion over four years. It aims to study Long Covid and help find treatments for the millions of people experiencing a range of long-lasting symptoms, including extreme fatigue, brain fog and shortness of breath. The exercise study protocol has not been finalised, but it will test physical therapy at different intensity levels, tailored to the patient’s capabilities, and aim to improve endurance, said Adrian Hernandez, executive director of Duke Clinical Research Institute. Some Long Covid advocates, however, say that any exercise trial could be potentially dangerous for long-covid patients with myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome. Studies show that people with ME/CFS don’t have the same response to physical exertion as healthy individuals, and many ME/CFS patients report a worsening of symptoms after even small amounts of activity. This crash is called post-exertional malaise. Advocates now worry that Long Covid patients with ME/CFS could be similarly harmed if they take part in any exercise study. Read full story (paywalled) Source: Washington Post, 22 May 2023 Further reading on the hub: Understanding Covid-19 as a vascular disease and its implications for exercise
  7. 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.
  8. Content Article
    NICE has published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men. The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
  9. Content Article
    This article lists some of the top chronic pain and illness blogs on the internet, with a short description of each one.
  10. Content Article
    In this blog, Julie Rehmeyer discusses the impact that flawed research results had on patients with chronic fatigue syndrome.
  11. 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.
  12. 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.
  13. Content Article
    The UK Government is seeking the views of members of the public on an interim delivery plan to improve experiences and outcomes of people with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). The consultation asks for views on: research attitudes and education living with ME/CFS language used in relation to ME/CFS The responses will be used to help the Government understand:how well the plan identifies and addresses the issues most important to the ME/CFS community and where further action may be required. This consultation closes at 11:59pm on 4 October 2023.
  14. 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
  15. News Article
    A health watchdog has scrapped a previous recommendation of graded exercise therapy for ME. The National Institute of Health and Care Excellence (NICE) has published a long-awaited and contentious final update to guidance on treatment. Many patients with ME or chronic fatigue syndrome (CFS) say the therapy, which encourages patients to slowly increase their levels of activity, makes their condition worse. The advice was due out in August, but NICE pulled the publication at the last minute. At that time, NICE said the delay was necessary to allow more conversations with patient groups and professionals, so that its advice would be supported. There are strong and varied views on how the illness should be best managed. The updated guidance for England and Wales recommends people judge their own "energy limit" when undertaking activity of any kind, and a physical activity programme should only be considered in specific circumstances. It warns practitioners: "Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms." It also clarifies advice on a talking therapy, known as CBT, stressing that it is only helpful in treating anxiety around the condition, not the illness itself. And it emphasises the need for early and accurate diagnosis. Read full story Source: BBC News, 29 October 2021
  16. 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
  17. 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
  18. 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
  19. News Article
    In recent months, long Covid has received a great deal of media and public attention. Research has found that as many as one in four of those infected with Covid suffer from chronic long-term symptoms, including headaches, dizziness, abdominal pain, heart problems, fatigue, anxiety, depression, cognitive impairment and other conditions. It is a difficult and complex illness, and we must do much more to help those who are struggling with it. At the same time, it is important to realise that rather than being a strange special case, long Covid is probably part of a broader phenomenon that affects many more people. In recent years, doctors and researchers have increasingly realised that many of those who survive an illness of any kind, or who go through serious physical trauma, are at high risk for a range of debilitating and chronic physical, cognitive and mental health symptoms – problems that closely resemble long Covid. As medicine has advanced, clinicians have learned how to save hundreds of thousands of severely ill or injured patients who would have previously died. Although this is a remarkable accomplishment, however, in many cases, survival does not mean complete recovery: some patients find that their bodies, brains and psyches continue to bear the scars of what they have gone through. One non-Covid study found that a year after hospitalisation, a third of patients with severe respiratory failure or shock had significant cognitive impairment. Another found that between a quarter and a third of patients who were treated in the ICU had significant and long-lasting symptoms of anxiety, depression or PTSD. Researchers have found similar results for survivors of other medical conditions, including cancer, multiple sclerosis and ALS. Unfortunately, people with long Covid, as well as other chronic post-illness symptoms, often find that the medical establishment doesn’t understand their experience, and so minimises or questions it. This is not surprising: clinicians tend to pay less attention to how patients with severe illness do once they are out of mortal danger, or once symptoms extend beyond an arbitrary time frame. Read full story Source: The Guardian, 12 September 2021
  20. News Article
    Dr Kelly Fearnley caught COVID-19 in November 2020, after being redeployed to work on a coronavirus ward. Ten months on, she’s still living with debilitating symptoms of the condition known as long Covid. The latest estimates, published in June, suggest more than two million people in the UK have had long Covid since the pandemic began, while figures released by the Office for National Statistics in April show that more than 120,000 of those are NHS staff. Dr Fearnley discusses with iNews her experience of being taken to hospital after becoming seriously unwell. Dr Fearnley had a high resting heart rate and wasn’t able to get out of bed. She had pins and needles and was experiencing attacks of breathlessness, as well as violent shaking of her entire body. Yet, after running tests, she says the senior doctor she saw made it clear they believed Dr Fearnley was suffering from anxiety. “I was [treated as] an anxious little girl. My concerns weren’t taken seriously. Despite being a doctor myself, I felt let down by my colleagues at a time when I needed help but help wasn’t there,” Dr Fearnley said. “Sadly, I know my experience isn’t uncommon. I know a lot of long haulers have had their symptoms dismissed as anxiety.” But Dr Fearnley’s experience is also not unique to long Covid patients. “There’s a long history in medicine of dismissing hard-to-diagnose and hard-to-treat patients as having psychological or behavioural problems,” says Brian Hughes, Professor of Psychology at the National University of Ireland, Galway. “Historically, these problems have also been far more likely to emerge where illnesses primarily affect women,” he added. There are countless examples of this, but the condition that’s been most closely linked to long Covid is myalgic encephalomyelitis (ME) – also known as chronic fatigue syndrome or ME/CFS. 2020 research into GPs’ knowledge and understanding of the condition found that between a third and half of GPs did not accept ME as a “genuine clinical entity“. As a result, patients have continued to have their symptoms disbelieved or dismissed as psychological for decades. Read full story Source: iNews, 9 September 2021
  21. Content Article
    Poster from World Physiotherapy for World Physiotherapy Day 2021 highlighting the symptoms of Long Covid similar to ME/chronic fatigue syndrome which can worsen with exertion.
  22. Content Article
    Understanding myalgic encephalomyelitis/chronic fatigue syndrome—an elusive condition that often follows an infection and shares many similarities with Long Covid—could improve Long COVID19 research, argues a new Science Perspective.
  23. Content Article
    People with myalgic encephalomyelitis, or ME, have long felt disregarded by some medical professionals who believed their pain and exhaustion to be a psychological disorder. More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease. This article in the Irish Times highlights patients' experiences and the challenges they face.
  24. Content Article
    Pain is spoken about often within health and social care. Patients might be asked to locate our pain during examinations, to rate our level of pain or to describe the type of pain we are feeling. They may be forewarned of the possibilities of pain occurring during or after procedures or operations. Medical consent forms often include reference to the risk of pain and require a signature to confirm they have been appropriately ‘informed’. Pain can be acute (lasting less than 12 weeks) or chronic (lasting more than 12 weeks), and the way we experience it, our thresholds, can also vary. It can be our body’s way of warning us of potential damage, yet it can also occur when no actual harm is happening to the body.[1] It can cause trauma, physiological reactions, mental health difficulties and chronic fatigue, and can have a huge impact on someone’s quality of life and ability to perform daily tasks.[2] Pain is undoubtedly complex, but is it a patient safety issue?[3]
  25. Content Article
    Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is characterised by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain. Post-exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness. Scant observations in the available literature provide qualitative assessments of post-exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome. To enhance our understanding, Stussman et al. formed focus groups and listened to patients’ experiences to better understand post-extertional malaise. The authors found that the experience of post-exertional malaise in ME/CFS varies greatly between individuals and leads to a diminished quality of life. ME/CFS patients describe post-exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Given the extensive variability in patients, further research identifying subtypes of post-exertional malaise could lead to better targeted therapeutic options. 
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