Who receives a diagnostic label for fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome? A study in the lifelines cohort. — ME/CFS Atlas
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Who receives a diagnostic label for fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome? A study in the lifelines cohort.
Tattan, Mais, Hanssen, Denise J C, Rosmalen, Judith G M · Journal of psychosomatic research · 2026 · DOI
Quick Summary
This study looked at over 150,000 people to understand why some people with ME/CFS, fibromyalgia, or irritable bowel syndrome receive a diagnosis while others with the same symptoms do not. The researchers found that only a small number of people who meet the criteria for these conditions actually get diagnosed—about 14% for ME/CFS. Several factors like sex, education level, other health conditions, and how often people visit doctors affected whether they received a diagnosis.
Why It Matters
This study reveals a significant diagnostic gap in ME/CFS and related functional somatic syndromes, with only 14% of people meeting ME/CFS criteria receiving a formal diagnosis. Understanding which patient and healthcare factors influence diagnostic recognition is crucial for improving timely diagnosis, reducing patient suffering from unrecognized illness, and ensuring equitable access to care and validation across different demographic groups.
Observed Findings
Only 14.2% of participants meeting ME/CFS diagnostic criteria reported receiving a diagnosis, compared to 25.2% for fibromyalgia and 47.6% for IBS.
Female sex, lower education, non-anxiety/depression psychiatric diagnoses, somatic comorbidities, and higher healthcare use were positively associated with receiving a diagnostic label.
Older age, smoking status, and depressive or anxiety disorders were negatively associated with receiving a diagnostic label.
Receiving a diagnostic label was associated with lower quality of life and higher health anxiety, but not reduced mental work capacity.
Inferred Conclusions
The majority of individuals meeting functional somatic syndrome criteria remain undiagnosed, particularly those with ME/CFS.
Diagnostic labeling is influenced by multiple demographic, clinical, and healthcare-related factors that warrant further investigation to reduce inequities in diagnosis.
Diagnostic recognition is associated with increased health anxiety and reduced quality of life, suggesting complex relationships between labeling, symptom perception, and health outcomes.
Remaining Questions
Why are ME/CFS diagnoses so much less frequently given compared to IBS, and what role do clinician awareness and diagnostic criteria familiarity play?
Does receiving a diagnosis cause worsened quality of life and health anxiety, or do people with worse outcomes more actively seek diagnosis?
What This Study Does Not Prove
This cross-sectional study cannot establish causation—receiving a diagnosis could cause worse quality of life, or worse quality of life could prompt more diagnosis-seeking; the directionality is unclear. The study also cannot explain why these associations exist (e.g., whether lower diagnosis rates in older adults reflect biological differences, diagnostic bias, or different healthcare-seeking patterns). Finally, reliance on self-reported diagnosis status may introduce recall bias and cannot verify actual diagnostic practices.
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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How do differences in healthcare access, specialist availability, and clinical training across regions affect diagnostic label assignment?
What specific factors prevent diagnosis in older adults, smokers, and those with anxiety/depression—clinical judgment, symptom overlap, or reduced healthcare engagement?