ME/CFS is going to be the topic for CDC’s monthly Grand Rounds this Tuesday at 1 pm ET. The title of the session is “Chronic Fatigue Syndrome: Advancing Research and Clinical Education.” The presenters will be Anthony Komaroff (Harvard Medical Center), Elizabeth Unger (Chief of CDC’s Chronic Viral Diseases Branch), Charles Lapp (Hunter-Hopkins Center, P.A.), and Avindra
Over the weekend, members of the US Action Working Group (USAWG) were alerted to the publication of the National Institutes of Health’s study protocol (as posted originally). The content of the published protocol caused a number of concerns across the community, chief among them that the Reeves criteria were apparently being used as the basis for selecting
The Open Medicine Foundation’s Big Data study on severely ill patients can, and is, speeding up thanks to big donations.
Australian senator asks medical research council about ‘remarkably small amount of funding since 2000’ and are they funding GET or CBT .
An international group of 36 scientists and clinicians have added their names to an open letter that was sent three months ago to The Lancet, pointing out serious problems in the PACE trial. The letter, sent on 13 November, told The Lancet’s editor, Richard Horton, that “such flaws have no place in published research” and
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
