Many of us have already seen and signed Mary Gelpi’s petition asking the NIH to increase its research budget for ME/CFS funding to $100 million. Her groundbreaking petition has already netted 27,000 signatures as of this post. In Mary’s own words: I am only 31, and yet, everyday things like taking a bath exhaust me.
A pdf of this article is now available here. On 21 April Dr Avindra Nath gave a Solve ME/CFS Initiative webinar hosted by Dr Zaher Nahle. The phrase that stood out in Dr Avindra Nath’s description of the NIH ME/CFS study was ‘world-class’. He emphasized the innovative technology the NIH has at its disposal, and
Dr. Zaher Nahle from the Solve ME/CFS Initiative recently interviewed Dr. Avi Nath, who is leading the intramural study on ME/CFS at the NIH. The intramural study on ME/CFS at the NIH has raised some concerns in the ME/CFS community: the appointment of Dr. Walitt, who has made statements implying that he views ME/CFS as
Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding for biomedical innovation and targeting diseases with unmet treatment needs. The $5 billion proposal, called the National Biomedical Research Act, is just one of six bills now being discussed by the Health, Education, Labor & Pensions
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
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
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””] “I left medical school believing that ME was not a real disease and I would probably never see a case. I was wrong” [/pullquote] In this excellent piece in Monday’s Daily Telegraph, Dr. Charles Shepherd describes the history of ME’s neglect and says it’s time for doctors
NIH has now removed its Medline/ National Library of Medicine (NLM) article promoting CBT and GET for ME/CFS treatment. It was taken down just DAYS after we began filing complaints. I received a response from NLM explaining that they “removed the article since it did not provide a balanced view on the topic.” Although the
Report from Catalan The Catalan Government Health Department’s new plan for Central Sensitivity Syndrome patients Liga SFC/SSC, September 2015 On July 1st, 2015, the Health Department of the Catalan Government published a document, “Central Sensitivity Syndromes: Fibromyalgia, Chronic Fatigue Syndrome and Multiple Chemical Sensitivities”. This document was written by a group of so called “experts” appointed
