NIH Creates Council to Advance ME Research

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The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).
The committee, called the NANDS Council Working Group for ME/CFS Research, will be comprised of scientists, clinicians, representatives from advocacy organizations, and individuals with ME, including a representative from #MEAction. The committee will be housed in the National Institute of Neurological Disorders and Stroke (NINDS).
The NANDS council has been charged with “providing scientific guidance on how best to advance research in ME/CFS at the NIH,” including:

  • 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;
  • 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.

NANDS provides a real opportunity for scientists, clinicians, and advocacy groups like #MEAction and Solve ME/CFS Initiative (SMCI) to come to the table and help guide research initiatives. #MEAction is glad to have a seat at that table.
The council members will include: Chair Steven Roberts, PhD, Armin Alaedini, Ph.D, Lucinda Bateman, M.D., Dane Cook, Ph.D,  Carol Head, President of SMCI, Anthony Komaroff M.D., Amrit Shahzrad MBBS, MBA, Steven Schutzer, M.D. and Jennifer Brea, Executive Director of #MEAction.  Ex officio members include Beth Unger, Joe Breen, Vicky Whittemore, and Andrew Breeden.  The committee chair will be Steven Roberds.
While NANDS is a positive step in the right direction, we will continue the vital fight for urgent and comprehensive action commensurate with the disease burden of ME. We have secured a meeting with NIH Director, Francis Collins, where we will press forward with our demands.
Read more about the NANDS Council Working Group.
A Note about CFSAC
The NANDS working group is in no way similar to CFSAC.  It has a different purpose, framing, and is under the auspices of a different organization: it cannot replace CFSAC!
We will not give up the fight to reinstate CFSAC.  Though CFSAC was far from perfect, the committee enabled communication across federal agencies and engaged patients to provide advice and recommendations to the U.S Secretary of Health regarding ME.  
On Friday, Sept. 14th, #MEAction organized a virtual protest to demand a more robust committee for ME be instated, and a meeting with the U.S Secretary of Health, Alex Azar to discuss our concerns. Check out photos from our virtual protest under the hashtag #MissionNotAccomplishedHHS on social media.  

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8 thoughts on “NIH Creates Council to Advance ME Research”

  1. Marilyn Gavranovic

    #ICC4ME is the only valid definition for research & diagnosis on which to proceed. If advocating for IOM/SEID or the nonentity mecfs …you waste our live/time. Consult the CFSAC advocates with 30years experience or be babes in the woods. NIH & CDC have well proven themselves untrustworthy

  2. Marilyn Gavranovic

    #ICC4ME is the only valid definition for research & diagnosis on which to proceed. If advocating for IOM/SEID or the nonentity mecfs …you waste our live/time. Consult the CFSAC advocates with 30years experience or be babes in the woods. NIH & CDC have well proven themselves untrustworthy

  3. You are awesome; once again demonstrating the power of an organized, thoughtful and passionate group of individuals. Thank you does not come close to expressing our gratitude for the dedication of your whole staff. Blessings on you and your work.

  4. You are awesome; once again demonstrating the power of an organized, thoughtful and passionate group of individuals. Thank you does not come close to expressing our gratitude for the dedication of your whole staff. Blessings on you and your work.

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