Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey.
Holtzman, Carly S, Bhatia, Shaun, Cotler, Joseph et al.·Diagnostics (Basel, Switzerland)·2019
This study worked directly with ME/CFS patients to create a better way to measure post-exertional malaise (PEM)—the symptom where activity makes you feel significantly worse. Over 1,500 patients completed a survey to help researchers understand what aspects of PEM are most important to measure, including what triggers it, how quickly symptoms start, and how long they last. The study shows that involving patients in designing assessment tools leads to more thorough and meaningful measurements.