On Feb. 8, I wrote to NIH Director Francis Collins to express concern over the NIH’s mostly negative responses to the CFS Advisory Committee’s latest recommendations; the slow pace of formal patient involvement in the NIH’s new ME/CFS research program; and the originally-released use of the outdated Reeves criteria for selecting patients for the upcoming NIH inpatient
The US National Institutes of Health (NIH) has announced a $246,000 grant to study the use of an oral solution of isotonic saline to reduce orthostatic intolerance (OI) in ME/CFS patients. The grant has been awarded to New York Medical College’s Professor Marvin Medow, who has long had an interest in OI in ME/CFS, particularly
Jennie Spotila Reports on NIH ME/CFS Spending in 2015 Jennie Spotila has written another detailed analysis on NIH spending on ME/CFS research. On a positive note, spending on ME/CFS grants increased to $6,470,000 in 2015, which was a 20% increase over fiscal year 2014 and, “for the first time since at least 2009, there were no
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
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
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
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).
I am writing this piece to offer Dorothy Bishop & Stephan Lewandowsky some patient perspective on their joint piece in Nature : “Research integrity: Don’t let transparency damage science”. Specifically, I would like to add some context to this line in particular:- “When people object to science because it challenges their beliefs or jeopardizes their interests, they are rarely committed to informed debate.”