McPhee, Graham, Baldwin, Adrian, Kindlon, Tom et al. · Journal of health psychology · 2021 · DOI
This study looked at how 38 ME/CFS specialist clinics in England monitor and report harms from treatments like graded exercise therapy and cognitive behavioural therapy. Researchers found that clinics were inconsistent in how they handle treatment-related harm, rarely warned patients about potential risks in their written materials, and reported zero cases of harm despite knowing many patients dropped out of treatment. The study suggests clinics need better systems to detect, record, and stop treatments when patients are being harmed.
This research directly addresses patient concerns about treatment safety in ME/CFS, particularly regarding graded exercise therapy, which many patients report has worsened their condition. The findings reveal a critical disconnect between patient experiences of harm and clinic reporting systems, highlighting a patient safety gap in NHS ME/CFS services. Understanding these monitoring failures is essential for developing safer treatment protocols and ensuring patient voices about harm are heard and recorded.
This study does not establish whether graded exercise therapy or cognitive behavioural therapy actually cause harm—it documents that clinics are not systematically detecting or reporting such harms if they occur. The zero harm reports may reflect underdetection rather than absence of harm. The study also cannot determine harm rates or severity, as it assesses monitoring systems rather than directly measuring 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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