Author: #MEAction

James Coyne declares “moral equivalent of war” on PACE

James Coyne gives a public talk on PACE Trial In a public talk in Edinburgh on Monday, psychologist Professor James Coyne declared the “moral equivalent of war” on the practices and assumptions that, he said, have allowed the “bad science” of the PACE trial to go unchallenged by scientists and the media. The authors of

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Poll: Letter to thank NIH for Announcement

November 20th Update: Thanks to all of our members who voted in this poll. A significant minority of our members voted against #MEAction signing the letter, so we have decided to not formally sign the letter. We are still working out what policies make sense and really appreciate all of our members’ flexibility and openness

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Call for HHS to Investigate PACE

Call for HHS to Investigate PACE Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with the conduct, analyses, and results of U.K.’s £5 million PACE trial for chronic fatigue syndrome. PACE investigated the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) Since then, other researchers and journalists have

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Scientists demand independent analysis of PACE trial

Virology Blog today published an open letter from six leading scientists calling on The Lancet to seek an independent re-analysis of data from the controversial PACE trial. The Lancet published the first PACE trial paper in 2011, which examined psychological and exercise therapies aimed at getting chronic fatigue syndrome patients more active and was based

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James Coyne tells PACE authors: Stop fighting data release

Professor James Coyne today publicly urged the PACE trial authors and Queen Mary University of London to stop fighting the release of raw data from the study. He used his popular blog in a powerful call to those responsible for withholding the information from the £5 million, taxpayer-funded trial to “let the People’s data go”.

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Join me in Fundraising for SMCI!

I’ve raised $6500 in 24 hours — imagine what we could raise if you all joined in? You don’t have to create any content, or write anything. Just join the team, and share with the link with your network.

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Close to collapse: new report highlights shocking lack of social care for people with M.E.

[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]”I haven’t got the energy to spare to jump through hoops to get the help from social services that I am entitled to.”[/pullquote] This is the experience of just one of the 850 people with M.E.in the UK surveyed for Action for M.E.’s Close to collapse report, detailing the shocking

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Catalan: Fibro, CFS and MCS patients face new restrictions on medical care

Report from Catalan The Catalan Government Health Department’s new plan for Central Sensitivity Syndrome patients Liga SFC/SSC, September 2015 On July 1st, 2015, the Health Department of the Catalan Government published a document, “Central Sensitivity Syndromes: Fibromyalgia, Chronic Fatigue Syndrome and Multiple Chemical Sensitivities”. This document was written by a group of so called “experts” appointed

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Swedish psychiatrist on how he came to view M.E. as a physical disorder

Prof. Carl-Gerhard Gottfries is a professor of psychiatry. In this video, he explains how he and his colleagues first approached the treatment of patients with fibromyalgia and ME from a psychiatric perspective, and later came to view these illnesses as “multi-organic disorders” involving the immune system. Gottfries became interested in ME in 1957, when a pandemic

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