ME Support and Awareness in York

“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 […]

‘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 […]

How To Hide Your Disabled People: A Lesson From City Of York Council

By Elki in York Disability Rights Forum. Elki lives in York and relies on using her Blue Badge to be able to park near enough to the places she needs and wants to go. In this Member’s Voice post, Elki writes about what she sees as the dangers of reducing disability visibility in York. Disability […]

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 […]

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 […]

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 […]

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, […]

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 […]

Dog Whistle Medicine And Disability Denial

By David F Marks.   Here I review the corporate connections of the Wessely School with the insurance industry. The picture featured above shows the cover of a book edited by Peter Halligan and Mansel Alyward alongside a similar cover from the UnumProvident annual report of 2002. Imaginary conversation Imagine the conversation, which must have gone something like this: Unum executive: Hi, […]

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 […]

The PACE Trial Should Be Retracted, Because It Was Seriously Unethical, And The Lead Investigators Continue To Deny That.

  By Dr Neil MacFarlane MRCPsych in DrNMblog.   This was submitted (December 2020) to NICE in response to the new draft ME/CFS guidance of November 2020,[1] which had removed the recommendation for Graded Exercise Therapy (GET), and downgraded CBT from therapeutic to a ‘supportive’ option. [1] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents I appear to be the first UK psychiatrist to be […]

Trial By Error: Another Excellent Read On Long Covid, ME/CFS And Medically Unexplained Symptoms

By David Tuller, DrPH in Virology Blog. In a post earlier this week, I noted some differences in the tenor of the debate over Long Covid in the US and UK. Yesterday, another excellent and in-depth piece on the issues appeared on the domestic front, this time in VICE. The author, Alan Levinovitz, is associate professor of religious studies at […]

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