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Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Pathways to Prevention. December 9-10, 2014

On December 9–10, 2014, the National Institutes of Health (NIH) convened the Pathways to Prevention (P2P) Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The purpose of this workshop was to discuss whether establishing a standard case definition would help to better understand the disease and assist in accelerating the development of new diagnostic and prognostic tools. An impartial, independent panel drafted a report that identified research gaps and made recommendations for future research priorities.

As a follow-on activity to the ME/CFS Workshop, on May 24, 2016, a group of representatives from various federal agencies convened at a Federal Partners Meeting to review the panel report from the P2P workshop and identify possible opportunities for collaboration. The discussion at the meeting was centered on research needs and gaps identified in the panel report and included next steps the NIH and partner agencies could take to advance the research on ME/CFS.

The participants in the Federal Partners Meeting included representatives from:

  • National Institutes of Health
  • U.S. Food and Drug Administration (FDA)
  • Centers for Disease Control and Prevention (CDC)

ME/CFS is a complex, multifaceted disorder characterized by extreme fatigue and a host of other symptoms that can worsen after physical or mental activity, but do not improve with rest. In addition to extreme fatigue, people with ME/CFS may also experience:

  • Widespread muscle and joint pain
  • Sore throat
  • Tender lymph nodes in the neck or armpit
  • Headaches
  • Sleep problems
  • Difficulty with short-term memory or concentration.

The CDC reports over 1 million adults with ME/CFS in the United States, and recent evidence has shown a higher prevalence in females compared to males. Certain racial/ethnic groups have also been found to be at an increased risk for ME/CFS, most notably Native American and African American populations. The economic burden of ME/CFS, including annual health care costs, is estimated to be between $1.9 billion and $7.2 billion.

The Federal Partners Meeting report summarizes the discussion and recommendations generated at this meeting.