Assessing attitudes toward new names for chronic fatigue syndrome.
Jason, L A, Eisele, H, Taylor, R R · Evaluation & the health professions · 2001 · DOI
Quick Summary
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.
Why It Matters
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.
Observed Findings
86% of respondents supported changing the name 'chronic fatigue syndrome'
Patients were more supportive of a name change than scientists and physicians
Respondents showed strong divergence between preferring 'myalgic encephalopathy' versus 'neuro-endocrine immune disorder'
Less than 30% of respondents who chose either proposed name supported the alternative option
Different stakeholder groups (patients, physicians, scientists) demonstrated distinct preferences regarding nomenclature
Inferred Conclusions
A clear majority desire a new disease name that better reflects the condition's severity and complexity
Multiple stakeholder groups are involved in the naming process, each with disparate but strongly held views
Achieving consensus on a single new name would be challenging given the polarization between major naming proposals
Remaining Questions
What are the specific reasons patients and physicians prefer different names? Would additional education about proposed names' scientific rationales change stakeholder preferences?
How have attitudes toward disease naming evolved since 2001, and do current ME/CFS communities support the same proposed alternatives?
What This Study Does Not Prove
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.