Queen Mary University of London (QMUL), acting on behalf of the authors of the highly controversial PACE trial, has rejected a request made by a group of scientists for raw, anonymised data from the trial. The group was led by world-famous geneticist Professor Ron Davis of Stanford University, whose son, Whitney Dafoe, is gravely ill
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
A team of climbers are taking part in a gruelling charity event with the aim of scaling the height of Everest (8,848m) in a single day, raising funds for much-needed research into ME/CFS. As the climbing wall is only 12.5m in height, the team will have to climb it over 708 times to reach their goal and it’s expected to take them between 6 and 9 hours. The Everest Challenge will be a real test of the team’s commitment, strength and endurance.
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
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
Yesterday, Columbia University professor of statistics Andrew Gelman published a warning that The Lancet was risking its reputation by refusing to rectify errors in the main paper on the PACE trial that appeared in the journal in 2011. In his article on a popular statistics blog, Professor Gelman described the PACE authors’ refusal to share
MedPage Today’s Update on ME/CFS Research Plans MedPage Today reposted Shannon Firth’s earlier article on ME/CFS in their 2015 recap and also published an in-depth update by the author. The new article goes in-depth on Ron Davis’ plans for the Big Data study and also includes an interview with Jen Brea and information from the
Yesterday, journalist and public health expert Dr. David Tuller published on Virology Blog a list of 68 questions for the authors of the controversial PACE trial. The trial studied the effects of graded exercise and cognitive therapy on chronic fatigue syndrome. Dr. Tuller has, he said, been seeking answers from the PACE researchers for more
Ron Davis’ Plea for his Son’s Life Ron Davis recently posted a heart-felt plea for more research “before his son, and others like him, die from this horrific disease.” He has given us permission to share his post in order to reach as many people as possible with Whitney’s story. Here is Dr Davis’ plea:
Basic research and drug trials under discussion at the NIH In October, the National Institutes of Health (NIH) announced it was stepping up its commitment to ME/CFS and would be expanding its intramural and extramural research programs. Francis Collins, director of the NIH, told Science that his colleagues were “determined to move pretty fast on this.”
