Myalgic Encephalomyelitis

Myalgic Encephalomyelitis

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 […]

Scotland Could Be Set For ‘Ground-Breaking’ Move On UN Convention

  By John Pring in Disability News Service.   Disabled people in Scotland could be set for “ground-breaking” improvements to the “protection, progression, and promotion” of their human rights, after their government pledged to incorporate the UN disability convention into Scottish law.  The promise came as the Scottish government accepted the 30 recommendations made in a […]

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 […]

Scientist With Son Who Suffers From Chronic Fatigue Syndrome Hopes Research Can Help COVID-19 Patients

  By Austin Williams in Fox 26.   The National Institutes of Health identifies “COVID long haulers” as a “large numbers of patients who have been infected with SARS-CoV-2 continue to experience a constellation of symptoms long past the time that they’ve recovered from the initial stages of COVID-19 illness.” The chronic fatigue syndrome Ron Davis’ son suffers […]

Long Covid Isn’t As Unique As We Thought – (Mentions ME)

By Julia Belluz in Vox.   Dr. Craig Spencer, an emergency room doctor in New York City, was no stranger to dangerous viruses when a brush with one landed him in Bellevue Hospital for 19 days. But it was only after he was discharged, and declared virus-free, that the really bizarre symptoms set in. Back at home, he noticed he […]

Long-Covid Has A Baffling Sister: ME/CFS

  By Llewellyn King in Inside Sources.   Long COVID is the condition wherein people continue to experience symptoms for longer than usual after initially contracting COVID-19. Those symptoms are similar to the ones of another long-haul disease, Myalgic Encephalomyelitis, often called Chronic Fatigue Syndrome. For a decade, in broadcasts and newspaper columns, I have been detailing the […]

Research Digest 12/03/21

    From Emerge Australia.   Welcome to the 65th Emerge Australia Research Digest, where you will find summaries of some of the latest research and information about ME/CFS, with links to the complete articles. You can also join our community and choose to have the Digest delivered straight to your inbox every fortnight on […]

ME/CFS And The Lightning Process

  By David F Marks in Science, Behaviour, Homeostasis. Here I review research by the Wessely School on the Lightning Process (LP). LP is a pseudoscientific cult founded by Phil Parker, a Tarot reader, specialist in auras and spiritual guides, and an osteopath. It has triggered a spate of shoddy evidence and false claims that brings a new low level […]

Our Treatment Of The Vulnerable – Challenges For The Family Justice System

  from Valerie Eliot Smith. This is the text of a paper by Sir James Munby (lately President of the Family Division) delivered at the Royal Holloway University of London Symposium : ‘Inequality and Rights – Contemporary Challenges in the Child Protection and Family Justice Systems before and during the Pandemic’, which was held remotely […]

When Rest May Be Best For Post-Viral Fatigue

  From The Guardian. Graded exercise therapy is not the right way to treat people with ME or long Covid, argue Dr Charles Shepherd and Rachel Harding. Dr Alastair Miller, Professor Paul Garner and Professor Peter White are not correct when they state that graded exercise therapy (GET) is a safe and effective treatment for ME/chronic fatigue syndrome (Letters, […]

Study Suggests Similar Processes Are Driving Long COVID And ME/CFS

  By Cort Johnson in Health Rising. Eric Schadt, the study’s senior author, is not your average researcher, and Phillip Comella, the lead author, has personal experience with mysterious diseases and difficult diagnoses. A biomathematician and bioengineer, Schadt has been at the forefront of biocomputational technologies for years. Schadt’s goal has always been to get […]

ME And The PACE Trial

  By David F Marks. Here I review the disastrous trial known as the ‘PACE trial’. This updates a post from several years ago. Review of the evidence indicates that none of the Wessely School’s hypotheses about the causes of ME/CFS are supported by the science (see here, here and here). Under these circumstances it would be scientifically impossible for […]

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