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
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and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of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 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
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
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
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 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).
Large controversial UK study still refusing to release data: latest update on 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
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.
