In 2019, the National Institutes of Health (NIH) National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for ME/CFS presented the Report of the NANDS Council Working Group for ME/CFS Research. Solve leadership and Research Advisory Council (RAC) members were part of the Working Group, and the delivery of the report they created was expected to be a sea change in how ME/CFS is addressed within NIH.
In 2022, as part of the strategic planning process outlined in the report, NINDS announced the development of a Research Roadmap for ME/CFS, which will identify research priorities to move the field toward translational studies and clinical trials.
We’re pleased to announce that Solve President and CEO Oved Amitay will join the Research Roadmap Working Group, which includes ME/CFS basic and clinical experts from the research community, leaders of ME/CFS non-profit advocacy and research organizations, as well as people who are living with ME/CFS, have a family history of ME/CFS, are caregivers/care partners of people living with ME/CFS, and/or identify as ME/CFS patient advocates.
Amitay remarked, “We’re excited about this opportunity and pleased to see a refocus of efforts on behalf of people with ME/CFS, as the previous committee was disbanded and has not seen any coordination efforts since 2019. Meaningful progress in research must be informed by the input of community members whose knowledge and experience offer invaluable insight.”
Also on the Working Group are Solve RAC members Lucinda Bateman, M.D., Maureen Hanson, Ph.D., Anthony L. Komaroff, M.D., Sue Levine, M.D., and Solve Ramsay Research Grant winner Jarred Younger, Ph.D.
The Working Group will meet regularly in 2023 to discuss and develop a Research Roadmap for ME/CFS. Members of the Trans-NIH ME/CFS Working Group will coordinate the activities of the ME/CFS Research Roadmap Working Group together with staff from the National Institute of Neurological Disorders and Strokes (NINDS) Office of Science Policy and Planning and the NINDS Office of Neuroscience Communications and Engagement.
The Working Group will also make a presentation at the NIH ME/CFS research conference to be held in person (and virtually) at NIH in Bethesda, MD, December 12-13, 2023.
Stay tuned for more details on Working Group activities and the December NIH conference!