At Tuesday’s CDC Grand Rounds Wilhelmina Jenkins, a long-time ME/CFS advocate, asked Dr. Avindra Nath, the PI of the NIH intramural study, a question about the planned Patient Advisory Committee mentioned in his presentation and about RFAs. We thought patients and allies may find a video and transcript of the question and Dr Nath’s response
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
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.
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
chat live with other pwme globally
Running on the idea that visual representations of life with M.E. can – as accurately as possible – portray the depth, the range, the severity and the unpredictability of the condition, I am pleased to say that I am currently embarking on Change For M.E. Change For Us’ next visual project….
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
