In 2018, the National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was charged with providing scientific guidance on how best to advance research in ME/CFS at NIH. The group was composed of scientists, clinicians, representatives from advocacy organizations, and individuals with ME/CFS.
From 2018-2019, the group identified gaps and opportunities in ME/CFS research, considered unique opportunities for NIH-supported ME/CFS research to attract and train a pipeline of new and young investigators in this field, and identified 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. Their efforts culminated in the Report of the NANDS Council Working Group for ME/CFS Research(pdf, 669 KB).
Working Group Members
Steven Roberds, Ph.D.
Tuberous Sclerosis Alliance
National Advisory Neurological Disorders and Stroke Council member
Silver Spring, MD
Armin Alaedini, Ph.D.
New York, NY
Lucinda Bateman, M.D.
Bateman Horne Center
Salt Lake City, UT
Los Angeles, CA
Alternate for Jennifer Brea:
Rochelle Joslyn, Ph.D.
Dane Cook, Ph.D.
University of Wisconsin
Solve ME/CFS Initiative
Los Angeles, CA
Anthony Komaroff, M.D.
Brigham & Women’s Hospital
Amrit Shahzad, MBBS, MBA*
University of California, San Diego
San Diego, CA
Steven Schutzer, M.D.
Rutgers New Jersey Medical School
Sadie Whittaker, Ph.D.**
Solve ME/CFS Initiative
Los Angeles, CA
*Carol Head rotated off the working group in May of 2019 and Amrit Shahzad rotated off the working group in April of 2019.
** Sadie Whittaker joined the working group in June of 2019.
Background, Charge, and Process
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, multi-facetted condition characterized by substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social or personal activities due to post-exertional malaise; unrefreshing sleep, and at least one of the following symptoms: cognitive impairment and/or orthostatic intolerance (Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness, 2015). Many individuals with ME/CFS experience significant disability, and some become homebound or bedbound. The etiology and pathogenesis remain unknown, there is no laboratory diagnostic test, and no FDA-approved treatment for ME/CFS. An estimated 836,000 to 2.5 million people in the United States have ME/CFS (Jason et al., 1999, 2006). ME/CFS is an unmet public health need with direct and indirect economic costs estimated to range from $18 billion to $51 billion annually in the US (Reynolds et al., 2004; Jason et al., 2008; Lin et al., 2011). Limited knowledge about the underlying cause(s) of ME/CFS creates an additional burden for individuals with the disease, their families and caregivers, as well as for health care providers.
Since the fall of 2015, the Trans-NIH ME/CFS Working Group has coordinated the extramural research efforts at NIH. This Working Group is composed of representatives from 24 NIH Institutes, Offices, and Centers who meet monthly. Chaired by Walter Koroshetz, M.D., director of the National Institute of Neurological Disorders and Stroke (NINDS), this group came together to issue two RFAs that resulted in the funding of three ME/CFS Collaborative Research Centers and a Data Management and Coordinating Center as well as administrative supplement grants in 2016. In addition, there is a portfolio of research grants on ME/CFS that are administered across NIH, primarily by the National Institute of Allergy and Infectious Disease (NIAID) and NINDS.
There is a significant need to grow the research portfolio on ME/CFS and to identify ways in which to attract both young investigators and investigators from other research fields to focus their research efforts on and develop strategies to advance research on this disease.
This new NANDS Working Group will provide scientific guidance to the NANDS Council on how best to advance research on ME/CFS at the National Institutes of Health (NIH).
Consistent with this charge, this NANDS-WG will:
- With reports from the P2P workshop and the IOM report as a guide:
- Assess current NIH ME/CFS research activities and the extent to which they address opportunities and gaps in ME/CFS research
- Suggest specific goals to further address opportunities and gaps in ME/CFS research, given the evolving scientific landscape
- Consider unique opportunities for NIH-supported ME/CFS research to train and empower a pipeline of young investigators, as well as investigators new to the field
- Identify an effective potential structure to enhance ongoing biomedical research collaboration and communication between relevant advocacy organizations, individuals with ME/CFS, researchers, and federal agencies
Process, Deliverables, and Timeframe
This working group of the NANDS Council will:
- Seek input broadly from stakeholders (including people with ME/CFS, researchers and clinicians, and advocacy organizations) and other federal agencies
- Hold workshops to assess current efforts in areas outlined in the Working Group charge and identify opportunities for research
- Present its final report to the full NANDS Council at its September 2019 meeting
Proceedings and Outcomes