Jason, L A, Eisele, H, Taylor, R R · Evaluation & the health professions · 2001 · DOI
Researchers asked 432 people with ME/CFS and medical professionals what they thought about changing the disease's name from 'chronic fatigue syndrome.' Most people surveyed (86%) agreed a name change was needed, with patients being more supportive than doctors. However, people disagreed about what the new name should be—some preferred 'myalgic encephalopathy' while others favored 'neuro-endocrine immune disorder,' and very few people liked both options equally.
This study highlights a critical patient advocacy issue: the recognition that many people with ME/CFS felt their disease name inadequately represented their condition. Understanding stakeholder perspectives on disease nomenclature is important because the name affects how the disease is perceived by the public, healthcare providers, and funding agencies—ultimately influencing research investment and clinical care quality.
This survey does not prove that a name change would actually improve diagnosis rates, access to treatment, or disease outcomes. It only captures attitudes at a single point in time (2001) and does not establish which proposed name is scientifically most accurate or representative of the disease's underlying mechanisms. The study also cannot determine whether the preferences expressed would persist if stakeholders had more information about the scientific basis for each proposed name.
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 →
Contribute
Private, reviewed by a human. Not a public comment thread.