myalgic encephalomyelitis

“Doctors Can Commit Scientific Fraud And Financial Fraud And Not Be Punished”

  By David F Marks. Press Release by Dr Myhill concerning Dr Myhill’s Virtual Hearing 22 MARCH 2021 – vs ICO & GMC Doctors can commit scientific fraud and financial fraud and not be punished. This is the conclusion of Dr Sarah Myhill following her recent hearing vs the ICO and GMC. Dr Sarah Myhill tells […]

Let’s Drop ‘Chronic Fatigue Syndrome’

  By Ev Francis in West England Bylines. viral and I felt like Piers Morgan – difference being I wasn’t spouting tedious commentary on Prince Harry again. Someone pass him someone new to pick on. It came following the BBC Coronavirus special that discussed Long Covid and the parallels I’ve alluded to for the last 12 […]

‘Concerning Silence’ From Government Over Disability Ambassador Roles

By John Pring in Disability News Service. The government has failed to explain why it has made no contact for more than two months with a string of disabled experts who applied for voluntary positions as its “disability and access ambassadors”. The Disability Unit announced in early January that it was seeking 14 “senior business people” to […]

Life-Threatening Malnutrition In Very Severe ME/CFS

By Helen Baxter, Nigel Speight and William Weir in MDPI.   Abstract Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink. Some patients with very severe ME […]

Could High-Dose Thiamine (B-1) Help With ME/CFS, Fibromyalgia, And The Neurological Complications Of Ehlers-Danlos Syndrome ?

By Jeffrey Lubell in Health Rising.    Longtime readers of the Health Rising blog may remember an article that Cort wrote in 2013 about the promising results of a small study that found marked reductions in fatigue among three individuals with Fibromyalgia who took high doses of thiamine (Vitamin B-1). In the intervening years, several important studies on high-dose thiamine have been published, […]

Trial By Error: Jennie Spotila Tracks Down–and Busts–an Old Tale About “Death Threats” from Patients

  By David Tuller, DrPH In early 2011, the first report of the PACE results in The Lancet drew widespread criticism from patients and advocates. Later that year, stories about unhinged, anti-science patients harassing and threatening leading researchers in the field appeared in high-profile UK outlets like BMJ and The Times. In the UK, this appears to […]

What Is Hypopituitarism And Could It Be An Alternate Explanation For ME/CFS ?

  By Joanne Lane with comment from Dr Charles Shepherd in The ME Association.   I don’t have ME, but I have something important to say that I hope may help people who have. Twelve years ago, our 31-year-old son Christopher killed himself. We were devastated and desperate to find reasons. We wondered about the serious head injury he’d had when he was seven and we found that […]

Apparently Just By Talking About It, I’m Super-Spreading Long Covid

By George Monbiot in The Guardian.   Rejoice! A mystery has been solved. We now have an explanation for long Covid, a condition afflicting many thousands of people. A super-spreader has been identified. Important as this finding is, I’m reluctant to call for the vector to be eradicated. Why? Because it’s me. In a presentation to the reinsurance giant […]

Video: “A Conversation About Myalgic Encephalomyelitis With Dr. Nina Muirhead”

By Pyrrhus in Pheonix Rising. After their last webinar with Trish Greenhalgh, which turned into a disaster, the Canadian Institute for Health Research (CIHR) scheduled another webinar, but this time with British doctor-patient Dr. Nina Muirhead:   To watch the video,click on the link below:   Link to Dr Muirhead Video

Renowned Scientist’s Son Describes His Chronic Fatigue Syndrome: ‘A World Of Pain, Loss And Agony’

  By Johnny Dodd in People. Whitney Dafoe spent most of his 20s visiting doctors and undergoing tests to find an explanation for why he felt so weak and exhausted. “I was open to all possibilities,” recalls the one-time globetrotting, aspiring photographer, who often spent months at a time backpacking through remote locations around the […]

Our Response To That Controversial Study On CBT Outcomes In Chronic Fatigue Has Now Been Formally Published

  By Brian Hughes in The Science Bit.   As you read here in February, David Tuller and I attempted to respond to an alarming research paper that appeared in a recent issue of the Journal of the Royal Society of Medicine. The paper they had published had purported to show evidence that cognitive behavioural therapy leads to symptom improvements […]

Are Stiffened Arteries Increasing Cardiovascular Risk In ME/CFS And Fibromyalgia ?

By Cort Johnson in Health Rising. Systrom, Scheibenbogen and others have has found evidence of microcirculatory problems in chronic fatigue syndrome (ME/CFS) and fibromyalgia, but what about the big blood vessels – the arteries?   These muscular, but flexible, tubes transport oxygenated blood under high pressure from the heart to the organs and muscles. They […]

All Aboard The Long COVID Gravy Train

  By Brian Hughes in The Science Bit.   Swiss Re Group, “one of the world’s leading providers of reinsurance and insurance,” recently hosted a virtual Expert Forum on “secondary” impacts of COVID. As would be expected, the insurance industry is especially interested in the financial implications of this new disease. The programme covered many of the biophysical […]

COVID-19 ‘Long-Haul’ Symptoms Overlap With ME/CFS

  By Miriam E. Tucker in Medscape.   People experiencing long-term symptoms following acute COVID-19 infection are increasingly meeting criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a phenomenon that highlights the need for unified research and clinical approaches, speakers said at a press briefing Thursday held by the advocacy group MEAction. “Post-COVID lingering illness was predictable. Similar lingering […]

APPG On ME: Annual General Meeting And The Impact Of COVID-19 On People With ME/CFS

    From The ME Association. The Annual General Meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) will take place on Monday 19 April between 11:00 – 12:00. In addition to AGM business, this meeting will focus on the impact of the COVID-19 pandemic on the ME community. Points of discussion will include the clinical and pathological overlaps between ME and Long Covid, the COVID-19 […]

Trial By Error: Guardian Columnist George Monbiot Is Causing Long COVID, Says Professor Michael Sharpe

  By David Tuller, DrPH In a remarkable display of—well, I’m not even sure what to call it–Professor Michael Sharpe has blamed Guardian columnist George Monbiot and Long COVID support groups, among others, for the wave of people reporting prolonged symptoms after acute bouts of COVID-19. And during the same February presentation in which he made those observations, Professor […]

We Already Know Enough To Avoid Making The Same Mistakes Again With Long COVID

  By Todd E. Davenport , Staci R. Stevens , Jared Stevens , Christopher R. Snell  and J. Mark Van Ness in JOSPT.   Based on experience with past coronaviruses, the emerging challenge of prolonged symptoms after infection with the novel coronavirus 2019 (SARS-CoV-2) is unsurprising. Data from a large international web-based patient survey indicate substantial symptom overlap between long COVID and myalgic encephalomyelitis/chronic fatigue […]

Study Finds ME/CFS Most Neglected Disease Relative To Its Needs

  By Cort Johnson in Health Rising.   This is the third in a series of blogs on advocacy topics as we enter into the prime advocacy period of the year. ME/CFS Experts Speak Out in #MEAction’s Long Covid Media Conference Time to Strike! Sign Up for a Monumental Virtual Lobby Day “America’s Hidden Health […]

How COVID Long-Haulers Might Renew The Focus On Chronic Fatigue Syndrome

By Jad Sleiman in WHYY. Psychologist Leonard Jason knew the COVID long-haulers were coming long before anyone even had a name for them. “When we began hearing about individuals getting sick with this particular virus, we just assumed that there would be a certain percentage of individuals who did not recover,” he said. “And they ended up calling them […]

Help The Millions Missing

  With ME Awareness Month not too far away, you may find this of use to get supporters on board….   HELP THE MILLIONS MISSING Have you heard of the Millions Missing Have you heard the news Surely they’ve been on the radio Looking for any clues Have you heard of the Millions Missing People […]

MEA Responds To BBC Radio Scotland Recommendation Of GET For Long Covid & ME/CFS

  From The ME Association. On the 25 March, Jackie Brambles was standing in for Kay Adams on the BBC Radio Scotland Mornings show and held a phone-in with Dr Punam Krishnan around the issues of Long Covid. The show was in general very helpful. It reviewed, for example, the recent Long Covid study from the University of Leicester last week which concluded that seven in […]

Scientist Ron Davis Is Fighting To Cure His Son’s Chronic Fatigue: ‘It’s Like A Living Death’

  By Johnny Dodd in People.   Stanford geneticist Ron Davis faces his toughest challenge yet: tackling the chronic fatigue syndrome that has left his 37-year-old son bedridden. Thirty minutes into a Zoom interview about their years-long battle to keep their son Whitney Dafoe alive, Janet Dafoe shoots her husband Ron Davis an anxious glance. Whitney, 37, suffers from a severe case of […]

Dissecting The Nature Of Post-Exertional Malaise

By Megan Hartle, Lucinda Bateman and Suzanne D. Vernon in Taylor & Francis Online.    ABSTRACT Background Post-exertional malaise (PEM) is a defining characteristic of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) but there is insufficient research dissecting the nature of PEM from the patients’ perspective. Methods A PEM questionnaire administered to 150 ME/CFS patients. It included open-ended questions about triggers, experiences, […]

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