Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath’s two-part blog. Here’s Part 1 … Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference that focused on bigger, better, smarter approaches to research. Since then, Davey
A look at what you achieved by asking charities to call on the anonymized PACE trial data to be released, and what this means going forward.
NINDS Director confirms PEM and CCC required for NIH post-infectious ME/CFS study.
There are thousands of people with M.E. (Myalgic Encephalomyelitis) in Ireland. At the very best, we receive only symptom management from our doctors, that’s the best they can do for us. There is a drug, Ampligen (Rintatolimod), for the treatment of M.E. Ampligen has been successfully trialled in the U.S.A. for the last two decades.
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
We invite everyone in this community to take a look at these questions and add your suggestions for additional questions or changes below. We plan to collate them and submit an additional list of questions.
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.
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
