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Last week at NIH: Feb 28 Update

Last Week at NIH with a focus on the post-infectious ME/CFS intramural study – You can watch an introduction to the proposed NIH intramural study from the Principal Investigator of the study, Dr Nath, and can read a full transcript of his presentation and the subsequent Q&A session. The presentation was from two weeks ago

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NIH patient participation and communication: what do you want to see?

How should patients be integrated into the NIH process? The US National Institutes of Health has made several promising, public steps forward in recent months, announcing a new commitment to research ME/CFS, hinting at possible new drug trials, and promising to use strict criteria including the Canadian Consensus Criteria to select patients for their intramural studies. Yet

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Solve ME/CFS discusses Walitt, patient participation with NIH

Solve ME/CFS had a conversation with Vicky Whittemore of the US National Institutes of Health today regarding some pressing issues, in particular the participation of Brian Walitt in the study and the NIH’s plans for patient involvement. Dr. Whittemore was receptive to Solve ME/CFS’s opposition to Dr. Walitt’s participation in the study, but said that she has

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Bad timing, Collins says of NIH response to CFSAC

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pace of formal patient involvement in the NIH’s new ME/CFS research program; and the originally-released use of the outdated Reeves criteria for selecting patients for the upcoming NIH inpatient

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NIH lead clinical investigator thinks CFS and fibro are somatoform

Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious concerns due to his strong views of diseases like chronic fatigue syndrome and fibromyalgia as psychosomatic. In 2015, Walitt co-authored a paper in which it was stated that CFS and fibromyalgia are somatoform illnesses, characterized by a “…discordance between the severity

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