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Factors Affecting The Characterization Of Post-Exertional Malaise Derived From Patient Input, Carly S. Holtzman, Claire Fisher, Shaun Bhatia, Leonard A. Jason

Journal of Health Disparities Research and Practice

The National Institutes of Health/Center for Disease Control and Prevention (NIH/CDC) Common Data Elements (CDE) established a post-exertional malaise (PEM) workgroup with the task of describing PEM and recommending a standardized way of assessing it in patients with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). As a stigmatized group, patients with ME/CFS are in need of instruments which can properly describe their symptomatic experiences, which can help reduce the disparity between illness seriousness and appropriate attention from healthcare. The current study explored attitudes and preferences among 115 patients with ME/CFS who participated in the creation of a patient-driven instrument to …