The US Trans-NIH (National Institutes of Health) ME/CFS Working Group will present its proposal to advance research into the disease during a live webcast at 2pm (Eastern Time) on Thursday 26 May.
The broadcast will take place from a meeting of the National Advisory Neurological Disorders and Stroke Council. In order to be funded, proposals must first be approved by an Institute’s advisory council.
The Trans-NIH group was founded in 1999 but has yet to deliver major benefits. Patient advocate and blogger Jennie Spotila said, “The last time the Trans-NIH Working Group created any kind of plan was after the State of the Knowledge meeting in 2011, and NIH steadfastly refused all requests to see that plan.”
However, the NIH describes the group as having been “revamped” at the end of last year, raising hopes among patients that its new initiatives will be taken seriously.
In early March, the NIH said, “The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive research strategy for ME/CFS research that will include new RFAs (Requests for Funding Applications). Clearly, as stated in the initial response, biomarker research will be critical to understanding the underlying causes and mechanisms of disease in ME/CFS.”
Commenting on the proposal, Cort Johnson, patient advocate and founder of Health Rising, said, “I’m hoping for clinical trials for Rituximab and Ampligen… I would very pleasantly shocked if a couple of Centers of Excellence showed up.” He added, “Vicky Whittemore, our champion at NINDS, has said she thinks we will be pleased.”
A recording of the meeting will be made available at a later date.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the