Collaboration Details

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Title of Collaborative Activity:

Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Description of Collaborative Activity:

The Office of Disease Prevention coordinates the development of the Pathways to Prevention (P2P) program to host workshops that identify research gaps in a selected scientific area, identify methodological and scientific weaknesses in that scientific area, suggest research needs, and move the field forward through an unbiased, evidence-based assessment of a complex public health issue. Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was held December 9-10, 2014. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (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. The workshop was designed to clarify: 1) How the research on ME/CFS using multiple case definitions has contributed to the state of the current scientific literature on diagnosis, pathophysiology, treatment, cure, and prevention of ME/CFS; 2) How the measurement outcomes (tools and measures) currently used by researchers of ME/CFS are able to distinguish among those patients diagnosed with ME/CFS, including the sensitivity of the tools and measures to identify subsets of patients according to duration, severity, nature of the illness, onset characteristics, and other categorizations; 3) How the research on treatments or therapies shown to be effective in addressing symptoms of ME/CFS will lead to an understanding of the underlying pathology associated with ME/CFS; and 4) How innovative research approaches have provided an understanding of the pathophysiology of ME/CFS, and how this knowledge can be applied to the development of effective and safe treatments. The workshop was sponsored by the Office of Disease Prevention and the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Working Group. During the workshop, invited experts discussed the body of evidence and attendees provided comments during open discussion periods. An independent, multidisciplinary panel prepared a report that identified future research priorities.

Type of Collaborative Activity:

Meeting/ Workshop

Year the Collaborative Activity Originated:

2015

NIH Participating Institutes/Centers/Office of the Director:

NHLBI, NIAID, NINDS, NINR, OD/DPCPSI/ODP, OD/DPCPSI/ORWH

HHS Agency Collaborators on this Activity:

AHRQ