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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic and severe disease that, , affects up to 3.3 million people in the United States, 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.

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

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.