Project Summary The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) Network was created to foster multidisciplinary research to inform the etiology, pathogenesis, and treatment of ME/CFS, a debilitating, complex, multisystem disorder that affects approximately 0.9% of the population worldwide. Although researchers have identified multiple hypotheses for disease etiology and differential patterns in biological processes, the underlying mechanisms that trigger ME/CFS symptoms and their treatment remain unknown. A comprehensive approach is needed to (1) identify subtypes of ME/CFS based on biological markers and symptom classifications, (2) conduct longitudinal studies to understand the time course of disease and its manifestations, (3) develop and validate outcome measures, including common data elements, for future intervention trials, and (4) identify potential treatment targets. As the Data Management and Coordinating Center (DMCC) RTI will (1) enable novel discovery through collaborative science by expanding the content, userbase, and functionality of the mapMECFS data sharing portal; (2) advance ME/CFS research through our secure online data portal with enhanced data collection, data sharing, and clinical/biospecimen linkage tools; and (3) promote research efficiency and foster collaboration and coordination by enhancing communication with ME/CFS internal and external partners, promoting the use of common data elements, and providing logistical and administrative support.

Project Narrative ME/CFS is a debilitating and complex disorder that affects millions of people worldwide; however, the underlying mechanisms that trigger ME/CFS symptoms and their treatment remain unknown. To better understand the causes and discover better diagnostics and treatments to improve the health outcomes for individuals with ME/CFS, RTI’s DMCC will continue to support this Network by (1) offering expertise in patient- centered research, data processing, and analysis; (2) providing tools to foster communication and monitor study progress; and (3) expanding the capabilities and reach of our publicly available ME/CFS research tools.