Picariello, Federica, Ali, Sheila, Moss-Morris, Rona et al. · Journal of psychosomatic research · 2015 · DOI
This study asked 87 ME/CFS patients which terms they preferred to describe their condition. Patients strongly favored terms that emphasized the physical nature of their illness, with "Persistent Physical Symptoms" being the most popular choice. The findings suggest that how we name this illness matters to patients—they want terminology that reflects that their symptoms are genuinely physical, not imagined or purely psychological.
Patient preferences for terminology matter because the language used to describe an illness affects how patients perceive themselves, how others understand their condition, and ultimately how medical systems respond to them. This study demonstrates that ME/CFS patients prioritize terminology that validates the physical reality of their illness, which has implications for clinical communication, research framing, and reducing stigma.
This study does not establish that using preferred terminology will improve health outcomes or reduce disability; it only identifies patient preferences at a single point in time. The cross-sectional design prevents determination of whether terminology preferences have changed over time or whether they differ systematically across patient subgroups (e.g., by disease severity or duration). It also does not measure whether using preferred terminology in clinical practice actually improves patient satisfaction or engagement.
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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