Thornton, Eleanor J, Hayes, Lawrence D, Goodwin, Dawn S et al. · The American journal of medicine · 2025 · DOI
This study asked people with ME/CFS and healthcare providers what they think about managing energy and daily activities. The researchers held online workshops where patients shared their experiences and suggestions for better care. Participants stressed that doctors need better training about ME/CFS, patients should be involved in their own care planning, and new tools like apps and sleep management could help improve how people manage their energy.
This study directly incorporates the voices and experiences of people living with ME/CFS into research and clinical care recommendations, addressing a critical gap where patients' expertise is often undervalued. By identifying concrete recommendations for improving energy management strategies and healthcare delivery, it provides a foundation for developing more effective, patient-centered interventions and combating stigma in medical practice.
This study does not test whether specific interventions actually work or compare the effectiveness of different energy management strategies. As a qualitative study gathering opinions and experiences rather than measuring clinical outcomes, it cannot establish causation or prove that implementing these recommendations will improve patient outcomes.
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 →
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