By Cort Johnson in Health Rising.
The National Institutes of Health (NIH), with its pitiful funding, has been a thorn in the ME/CFS community’s side for decades. For decades advocates have thrown everything they could – heartbreaking stories, demonstrations, insults – at the NIH in vain. Even the much acclaimed 2015 re-invigoration of ME/CFS research simply returned the NIH’s financial commitment to ME/CFS to around what it had been ten years earlier.
How ironic, then, to find possibly the most potentially effective opportunity for change in years to come from within the agency. This effort – a report on the need for an ME/CFS research strategy – was initiated by National Institute of Neurological Disorders and Stroke (NINDS) Director Walter Koroshetz and NINDS liaison to ME/CFS Vicky Whittemore. (Whittemore also runs the Trans-NIH Working Group for ME/CFS which facilitates ME/CFS activities at the NIH.) It generated little fanfare in the patient community, and the recent vote to approve the report got little notice. Time will tell, but it’s possible that vote has begun a process which will ultimately result in sweeping changes for ME/CFS at the NIH.
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