At the NIH tele-briefing on Tuesday, March 8th, Dr Walter Koroshetz, Director of NINDS set out the NIH’s strategy for tackling ME/CFS. He said it won’t be an easy task ‘else it would have been solved long ago’, and it wasn’t clear where the solution will come from. The NIH’s focus will be on attracting
On Tuesday, March 8th, NIH held a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. What follows is a full transcript of the conference call. You can view the transcript and listen to the audio of the call on the NIH website. On the call were
Editor’s note: This is a clarification on the NIH’s earlier, accidental release of the intramural study protocol, which listed the Reeves definition as the sole definition of the new study. Robert and Courtney’s summary of their conversation has been confirmed by multiple sources within the patient community, including #MEAction. Robert and I had a well-timed
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.”
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
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and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of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
Thank you to Jennifer Spotila for giving us permission to reprint her article and for all of her great investigative work. The original post can be found on her blog at http://www.occupycfs.com/. NIH: Who Reviewed Grants in 2015 In order to get NIH funding, a researcher has to succeed in several levels of application review. A persistent controversy
