Advocacy Archives

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

Call on our ME/CFS charities to support patient calls for release of the PACE data

February 1, 2016 No Comments

Tell our charities: QMUL must release PACE data I need your help. The UK Information Commissioner recently ruled that Queen Mary University of London (QMUL) must release PACE trial data requested by a patient under the Freedom of Information Act. However, QMUL appealed. The appeal will soon be heard at a tribunal. Meanwhile the PACE

We All Have CFS, Like It Or Not

February 1, 2016 No Comments

I’ve been inspired to write by Lucibee’s recent blogpost about the PACE trial (https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/), She raises an important point about how patients can sometimes be received for reporting any sort of improvement from CBT or GET.

Solve ME/CFS Initiative Grades HHS on CFSAC Response

January 22, 2016 No Comments

Solve ME/CFS Initiative Grades HHS on CFSAC Response The Solve ME/CFS Initiative has created a report card for HHS’ response to the recommendations made by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) after its August meeting. The grades the organization gave on the HHS response to the 13 CFSAC recommendations range from A- (one) to F (four).

UK study refuses to release data: PACE trial

January 21, 2016 2 Comments

Large controversial UK study still refusing to release data: latest update on the PACE trial

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

January 20, 2016 1 Comment

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

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

January 19, 2016 1 Comment

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.

Lancet Psychiatry publish Coyne and Laws PACE critique

January 19, 2016 1 Comment

Lancet Psychiatry have published three letters criticising a paper published in the journal on the long-term follow-up results of the PACE trial. A response from the study authors was also published. The paper, published in October, showed little difference in self-rated fatigue and physical function between the four treatment arms and thus no benefit of

James Coyne: PLOS One lawyers “squaring off” against PACE authors

January 9, 2016 No Comments

Professor James Coyne has provided an update on his request to PLOS One that they enforce their data-sharing policy upon the authors of the PACE trial, who published one of their papers in the journal. Professor Coyne had requested the data from Professor Paul McCrone under PLOS One’s policy. However, Professor McCrone’s administrative institution, King’s

Rehmeyer and Tuller: PACE trial didn’t prove graded exercise safe for CFS

January 7, 2016 No Comments

Journalists Julie Rehmeyer and Dr. David Tuller have published an analysis concluding that the PACE trial failed to demonstrate the safety of graded exercise therapy, despite its authors claiming that it was a safe treatment for patients with chronic fatigue syndrome (CFS). Their article, on Virology Blog, concludes that “the PACE researchers’ attempts to prove

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