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
Recently, the US National Institutes of Health (NIH) announced its protocol for a new intramural study examining post-infectious fatigue. The community has been eagerly awaiting the publication of the protocol since the October announcement that the NIH was finally making ME/CFS a priority. Numerous patients and organizations have attempted to initiate a dialogue with the
Marcie Zinn, Mark Zinn, and Leonard Jason of DePaul University published a case study this week that details how qEEGs can clearly show the dysregulation that occurs in the brains of CFS patients. The case study is of a 43-year old man with CFS (diagnosed by his doctor using the DePaul Symptom Questionnaire and meeting the Canadian Clinical Case definition).
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and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of
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
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
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
