National Institute of Neurological Disorders and Stroke
The National Institute of Neurological Disorders and Stroke (NINDS) "is a part of the U.S. National Institutes of Health (NIH). It conducts and funds research on brain and nervous system disorders."Walter J. Koroshetz, M.D. was selected as director of NINDS in 2011. It hosts the NANDS Council Working Group on ME/CFS, chaired by Dr. Steve Roberds.
ME/CFS research[edit | edit source]
On October 29, 2015, the Director of the National Institutes of Health, Francis Collins, announced "launching a research protocol at the NIH Clinical Center to intensely study individuals with ME/CFS and re-invigorating the efforts of the long-standing Trans-NIH ME/CFS Research Working Group with the National Institute of Neurological Disorders and Stroke (NINDS) as the lead of a multi-institute research effort."
NANDS Council Working Group on ME/CFS[edit | edit source]
In May 2018, NINDS formed a working group in National Advisory Neurological Disorders and Stroke (NANDS) Council charged with advising the NANDS Council on how best to advance ME/CFS research at NIH. The working group, chaired by Dr. Steve Roberds, held an introductory teleconference in September 2018 and is expected to make its report to the NANDS Council one year later (September 2019). In March 2019, the working group opened a public comment period to run from March 15, 2019 to May 1, 2019 seeking input. All stakeholders--"researchers, health care providers, individuals with ME/CFS, patient advocates and health advocacy organizations, scientific or professional organizations, federal agencies, as well as other interested members of the public"--are invited to submit comments, which can be done anonymously if preferred.
Members of the working group are:
Chair[edit | edit source]
Steven Roberds, Ph.D., Tuberous Sclerosis Alliance, National Advisory Neurological Disorders and Stroke Council member
Members[edit | edit source]
Armin Alaedini, Ph.D., Columbia University
Lucinda Bateman, M.D., Bateman Horne Center
Jennifer Brea, MEAction (Alternate for Jennifer Brea: Rochelle Joslyn, Ph.D., MEAction)
Dane Cook, Ph.D., University of Wisconsin
Carol Head, Solve ME/CFS Initiative
Anthony Komaroff, M.D., Brigham & Women’s Hospital
Amrit Shahzad, MBBS, MBA, University of California, San Diego
Steven Schutzer, M.D., Rutgers New Jersey Medical School
Ex Officio Members[edit | edit source]
Executive Secretary[edit | edit source]
Andrew Breeden, Ph.D., NIH/NINDS
CFSAC[edit | edit source]
The NIH sends a member of NINDS to the Health and Human Services (HHS) Chronic Fatigue Syndrome Advisory Committee (CFSAC) meetings until HHS dissolved the committee in 2018. Vicky Holets Whittemore, PhD, was serving as the NINDS representative to CFSAC when it was dissolved.
References[edit | edit source]
- NINDS - Wikipedia
- Trans-NIH Working Group
- "NANDSC Working Group for ME/CFS Research | National Institute of Neurological Disorders and Stroke". www.ninds.nih.gov. Retrieved Mar 31, 2019.
- "NANDS Council Working Group for ME/CFS Research Charge | National Institute of Neurological Disorders and Stroke". www.ninds.nih.gov. Retrieved Mar 31, 2019.
- "Request for Information: Soliciting Input on How Best to Advance Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research | National Institute of Neurological Disorders and Stroke". www.ninds.nih.gov. Retrieved Mar 31, 2019.
[edit | edit source]
Chronic fatigue syndrome advisory committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.