Devendorf, Andrew R, Rown, Abigail A, Jason, Leonard A · Chronic illness · 2020 · DOI
This study asked 10 women over age 50 with ME/CFS what recovery means to them. Most patients didn't believe they could fully recover from ME/CFS, but they did believe they could achieve meaningful improvement through learning better coping strategies. Patients defined recovery as being able to function without constant fear of getting worse, returning to activities that matter to them, and having their symptoms improve significantly.
This research centers patient perspectives—often overlooked in ME/CFS outcome debates—to define what recovery actually means to those living with the illness. Understanding how patients conceptualize recovery can help clinicians set realistic, patient-aligned treatment goals and improve how success is measured in research, moving beyond symptom-focused metrics to include meaningful life functioning.
This qualitative study with 10 female participants cannot establish the prevalence of these recovery definitions across the broader ME/CFS population or other demographic groups. The findings reflect perspectives of older women and may not generalize to younger patients, men, or those with different disease trajectories. The study does not evaluate effectiveness of any particular treatment or coping strategy.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
Spotted an error in this entry? Report it →