Geraghty, Keith J, Blease, Charlotte · Disability and rehabilitation · 2019 · DOI
This review examines why many ME/CFS patients feel harmed or upset after seeing doctors. The researchers found seven main problems: difficulty getting diagnosed, being misdiagnosed with other conditions, trouble accessing medical support, poor quality of care, negative experiences with treatments like cognitive behavioral therapy and exercise programs, doctors not believing patients' descriptions of their illness, and emotional distress. The authors suggest that doctors should listen more carefully to patients and adopt approaches centered on what patients actually experience.
This study validates patients' documented experiences of medical distress and systematically documents how certain clinical frameworks may cause harm rather than help. It provides evidence-based grounds for questioning current treatment approaches and advocates for clinical practices that better align with patient values and biomedical evidence. For the ME/CFS community, this review supports calls for medical model reform and more respectful, evidence-informed clinical encounters.
This review does not quantify how frequently each type of harm occurs or determine which patients are most vulnerable. It does not establish definitive mechanisms of harm or prove that biopsychosocial approaches cause more damage than no treatment. The narrative methodology cannot definitively separate correlation from causation in complex clinical encounters.
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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