Update: The video of Dr Nath’s talk is now available on youtube. Dr Avindra Nath, Chief of the Section of Infections of the Nervous System at NINDS, gave a presentation on February 16 at CDC Grand Rounds going which went into detail on NIH’s new intramural ME/CFS study. The recording should be up on February 18 at http://www.cdc.gov/cdcgrandrounds/, but
NINDS Director confirms PEM and CCC required for NIH post-infectious ME/CFS study.
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
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
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).
Help us build a powerful, participatory voice for change in Washington #MEAction is thrilled to announce that we are coming together with over twenty organizations, bloggers, and independent advocates to form a US Action Working Group. We aim to create a powerful, participatory voice for change in Congress, across our federal agencies, and in medicine. Read the
