ME Symptoms

“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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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, […]

NICE Announce New Publication Date For The ME/CFS Clinical Guideline

  Russell Fleming, Content Manager, ME Association Dear Stakeholder,  Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.  29 March 2021    The ME Association was expecting NICE (The […]

ME/CFS Experts Speak Out In #MEAction’s Long Covid Media Conference

By Cort Johnson in Health Rising.   We’re moving into a prime advocacy period. This is the second of a series of blogs on advocacy that are going to appear over the next month. The first focused on the big advocacy event of the year – the Solve ME/CFS Initiative’s Lobby Day. If you’re in […]

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

  By Jad Sleiman in WHYY. said it was no surprise that some subset of those infected with the new coronavirus just stayed sick because that kind of thing has always happened. “So if you look at all the different viruses that have occurred … from the Spanish flu (of) 1918 to Ebola, …  to SIRS, […]

ME & Long Covid – When Will Our Exhausted Cries Be Heard ?

  By Revd Joe Haward in Byline Times. Reverend Joe Haward shares his experiences of having ME and explores the challenges patients face in getting the reality of their lives with the disease heard by professionals and those in positions of power. On Friday 8 February 2019, I was rushed into hospital with a suspected […]

Trial By Error: Clueless Wall Street Journal Op-Ed Endorses PACE As The “Prevailing View” Among Docs

  By David Tuller, DrPH in Virology Blog. Long Covid stories and commentaries seem to be everywhere—too many to keep track of! This week, The Wall Street Journal published an opinion piece about long Covid and ME/CFS that is breathtakingly ill-informed—and more importantly, just wrong. Beyond that, it showed remarkable disrespect for patients and their experiences. (After this low […]

I Just Walked For The First Time In Five Years

By Jamison Hill.   Tears are gushing out of my eyes, down my cheeks, dampening my shirt. These tears are a mix of joy and sadness. Joy for having just walked for the first time in half a decade. Sadness for having had to live through those five years. I’ve been sick since 2010, but […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

From the NotcJust Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is the worsening […]

Why Terms Like ‘Fully Accessible’ Don’t Help Disabled People

  By Carrie-Ann Lightly. Visiting a new place can be anxiety-inducing for even the most confident disabled person. A holiday, a weekend trip, a day out – even popping to the local shops. Why would you be worried about nipping out for a loaf of bread, I hear you ask? Because, dear reader, the language […]

Research Interview: Professor Ken Walder

By Jason Murphy in Emerge Australia.    2021 is an exciting time for ME/CFS science in Australia. Money is flowing. That means in time, research results will also flow. Australian labs are gearing up to do the work to deliver insights into the cause of ME/CFS and, most importantly, possible treatments. Australia’s National Health and […]

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