Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic and severe disease that, according to the CDC, affects 836,000 to 2.5 million Americans, many of whom have not been diagnosed.

NIH supports investigator-initiated research on ME/CFS with a primary focus on understanding the underlying cause(s) of the disease. In addition, the NIH supports three ME/CFS Collaborative Research Centers and a Data Management Coordinating Center with the goal of advancing research on ME/CFS through a consortium of multi-disciplinary research.

Director’s Blog on ME/CFS

Trans-NIH ME/CFS Working Group

Established in 1999, the Trans-NIH ME/CFS Working Group includes representatives from NIH Institutes, Centers, and Offices within the NIH Office of the Director. Working as a team with leadership from the National Institute of Neurological Disorders and Stroke (NINDS), the Trans-NIH ME/CFS Working Group identifies shared areas of interest and challenges to advance ME/CFS research. The Working Group provides evidence-based rationales for supporting ME/CFS research and attracting investigators to study this complex disease. In addition, the Working Group works to leverage resources across NIH, such as personnel, equipment, methodology, supplies, and collaborative expert networks.

Goals

  • Advance research on the cause, prevention, diagnosis, pathophysiology and treatment of ME/CFS
  • Encourage biomedical research investigators and organizations to study ME/CFS
  • Communicate ME/CFS research information among and between NIH Institutes and Centers, and the NIH Office of the Director

Working Group Members

Walter Koroshetz, M.D., Chair
National Institute of Neurological Disorders and Stroke

Vicky Whittemore, Ph.D.
National Institute of Neurological Disorders and Stroke

Guadalupe Aquino
National Center for Advancing Translational Sciences

Andrew Breeden, Ph.D.
National Institute of Mental Health

Joseph Breen, Ph.D.
National Institute of Allergy and Infectious Diseases

Emmeline Edwards, Ph.D.
National Center for Complementary and Integrative Health

Basil Eldadah, M.D., Ph.D.
National Institute on Aging

Adam Felsenfeld, Ph.D.
National Human Genome Research Institute

Melissa Ghim, Ph.D.
National Institute of Dental and Craniofacial Research

Dana M. Greene, Ph.D.
Office of Behavioral and Social Science Research

Rohan Hazra, M.D.
Eunice Kennedy Shriver National Institute of Child Health and Human Development

Mike Humble, Ph.D.
(Alternate: Jonathan Hollander, Ph.D.)

National Institute of Environmental Health Sciences

Kathy Jung, Ph.D.
National Institute on Alcohol Abuse and Alcoholism

Alexei D. Kondratyev, Ph.D.
Center for Scientific Review

Martha Matocha, Ph.D.
(Alternate: Leorey Saligan, Ph.D., RN, CRNP)

National Institute of Nursing Research

Cheryl L. McDonald, M.D.
National Heart, Lung, and Blood Institute

Christopher Mullins, Ph.D.
National Institute of Diabetes and Digestive and Kidney Diseases

Matthew Rudorfer, M.D.
National Institute of Mental Health

Shelley Su, Ph.D.
National Institute on Drug Abuse

David Thomas, Ph.D.
Office of Research on Women's Health

Steve Zullo, Ph.D.
National Institute on Biomedical Imaging and Bioengineering

ME/CFS Interagency Collaborative

NIH also co-organizes with the Centers for Diseases Control (CDC) and participates in the ME/CFS Interagency Collaborative. This group is composed of representatives of the federal agencies that provide services to individuals with ME/CFS, support research on ME/CFS, and provide medical education and other services to the American public.

Previous Interagency ME/CFS Working Group meetings can be found here.