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#MEAction delivers Lancet PACE petition, makes Wall Street Journal

March 8, 2016 23 Comments

#MEAction delivers Lancet PACE petition, makes Wall Street Journal #MEAction has sent an 11,000-signature petition to The Lancet, calling for the retraction of “misleading” analyses and claims published in a 2011 PACE trial paper concerning the effectiveness of cognitive behavioural therapy and graded exercise therapy for ME/CFS. Copies of the petition, which when printed were

Ten organisations call for PACE data release, AYME refuses

March 6, 2016 3 Comments

Ten organisations so far have joined ME/CFS patient Clark Ellis’s call to Queen Mary University of London (QMUL) to release data from the PACE trial but one group has refused. In early February, Mr Ellis asked seven major UK ME/CFS charities to write to ask QMUL to abandon their tribunal appeal against the UK Information

PACE Trial’s Forbidden Fruits: The Fruit of Your Labour

February 16, 2016 1 Comment

A look at what you achieved by asking charities to call on the anonymized PACE trial data to be released, and what this means going forward.

36 more scientists join open letter to Lancet on PACE

February 11, 2016 3 Comments

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

PACE: Objections, Challenges & Beliefs

February 7, 2016 No Comments

I am writing this piece to offer Dorothy Bishop & Stephan Lewandowsky some patient perspective on their joint piece in Nature : “Research integrity: Don’t let transparency damage science”. Specifically, I would like to add some context to this line in particular:- “When people object to science because it challenges their beliefs or jeopardizes their interests, they are rarely committed to informed debate.”

James Coyne at Belfast Castle: PACE a “wasteful train wreck of a study”

February 7, 2016 3 Comments

Professor James Coyne told a packed audience at Belfast Castle in Northern Ireland on Sunday that the PACE trial was “bad science” that was “being badly misrepresented by the investigators”, resulting in “clear harm to patients”. The PACE authors had, he said, changed their study endpoints after peeking at the data and had suppressed analyses

Tuller summarizes issues with PACE in Health Affairs

February 4, 2016 No Comments

David Tuller has published a new article in the Health Affairs blog that summarizes the issues with the conduct of the PACE trial and also examines the ways in which PACE and other studies have impacted the attitudes of doctors and the clinical guidelines used by doctors to treat patients. Tuller’s series of articles reporting

Response to AHRQ's continued support of PACE

February 4, 2016 2 Comments

On February 3, 2016, a group of patient organizations and advocates (including #MEAction) sent a followup letter to the Agency for Healthcare Research and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of

Geocentrism and PACE – both on the wrong side of science

February 2, 2016 No Comments

Geocentrism and PACE – both on the wrong side of science Thank you to Ella Peregrine for kindly allowing us to republish her facebook post on #MEAction Recently, David Tuller, James Coyne, Vincent Racaniello, and some other non-invested scientists and writers have been looking more carefully into the claims and relative lack of transparency of the

Tuller: PACE authors “wrapping themselves in victimhood”

February 1, 2016 No Comments

Journalist and public health expert Dr. David Tuller has, on Virology Blog, attacked a recent commentary in Nature that included “hard-line opponents” of research into chronic fatigue syndrome with climate change denialists and pro-tobacco campaigners who engage in “endless information requests, complaints to researchers’ universities, online harassment, distortion of scientific findings and even threats of

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