Category: United Kingdom

36 more scientists join open letter to Lancet on PACE

An international group of 36 scientists and clinicians have added their names to an open letter that was sent three months ago to The Lancet, pointing out serious problems in the PACE trial. The letter, sent on 13 November, told The Lancet’s editor, Richard Horton, that “such flaws have no place in published research” and

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James Coyne to talk in Belfast on “scandal” of the PACE trial

Talk by James Coyne in February Professor James Coyne of the University of Pennsylvania will be giving a talk entitled “The scandal of the £5 million UK PACE trial for ME: what can be done?” to two separate audiences in Belfast, Northern Ireland, in February. One talk is directed specifically at professionals, including Members of

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10,000 signatures for more research funding in the UK!

Calling all British M.E. sufferers & allies, Inspired by our American friends and the progress that has been made over in the States with government funding and new research projects, we think it’s time for patients to put the pressure on the UK parliament. We are asking for an increase in budget to fund bio-medical research as well as the formation of a work group to represent the issues facing our community in government.

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Charles Shepherd: It's time for doctors to apologise to ME patients

[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””] “I left medical school believing that ME was not a real disease and I would probably never see a case. I was wrong”   [/pullquote] In this excellent piece in Monday’s Daily Telegraph, Dr. Charles Shepherd describes the history of ME’s neglect and says it’s time for doctors

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James Coyne to PLOS One: Don’t let PACE make a mockery of data sharing

Professor James Coyne yesterday posted online his letter to PLOS One complaining about the PACE authors’ failure to provide him with data from a paper published in the journal. Coyne’s letter was premature because he had been misinformed that he would receive a response within 20 days rather than 20 working days. However, it indicated

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Debunking the myth of the militant minority

In the British media, ME activists who have opposed cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are often been portrayed as an unreasonable, militant “minority.” Members of the #MEAction Science and Treatment Policy and Media Working Groups have drafted this fact sheet to explain the real reasons why ME patients are opposed to CBT and

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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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Share this film and join the petition to reform the NICE guidelines

On Friday, 30th October, Change For M.E. Change For Us launched their short film, The Last Great Medical Cover Up. The film details the extent of medical discrimination and neglect people living with M.E. are being subjected to every day. The 35 minute documentary features 6 individuals expressing what it’s really like to have a

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