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NIH Launches New Working Group Dedicated To ME/CFS

Friday 14 September 2018


From the Solve ME/CFS Initiative:




September 13, 2018
Copyright © 2018 The Solve ME/CFS Initiative.

The NIH (National Institutes of Health) recently formed The ME/CFS Working Group of the NINDS (National Institute of Neurological Disorders and Stroke) Advisory Council. The NINDS Advisory Council is an ongoing council chaired by Dr. Walter Koroshetz and is the highest decision-making authority within NINDS.

The news comes via the NINDS website:

“In May of 2018 the National Institute of Neurological Disorders and Stroke (NINDS) announced the creation of a Working Group of the National Advisory Neurological Disorders and Stroke (NANDS) Council focused on how best to advance research on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).

The Working Group was formed in summer 2018 and is composed of scientists, clinicians, representatives from advocacy organizations and individuals with ME/CFS, and is chaired by Dr. Steve Roberds, a member of the NANDS Council. The group held an introductory teleconference on September 4, 2018, during which Dr. Walter Koroshetz, NINDS Director, charged the group with providing scientific guidance on how best to advance research in ME/CFS at NIH. This includes identifying gaps and opportunities in ME/CFS research, considering unique opportunities for NIH-supported ME/CFS research to attract and train a pipeline of new and young investigators in this field, and identifying potential approaches to enhance ongoing research collaboration and communication between relevant advocacy organizations, individuals with ME/CFS, researchers, and federal agencies focused on funding research in ME/CFS. To inform these activities, the Working Group will seek input broadly from stakeholders (including people with ME/CFS, researchers and clinicians, and advocacy organizations) and other federal agencies, and will frame its findings in the context of ongoing activities.”

Carol Head, of SMCI, will sit on the Working Group as leader of the non-profit ME/CFS research and patient advocacy organization. We are pleased that SMCI has a seat at this table and believe the formation of this new Working Group, which has authority within the NIH, is a positive step forward the future of ME/CFS research at the NIH.


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