Tattan, Mais, Hanssen, Denise J C, Rosmalen, Judith G M · Journal of psychosomatic research · 2026 · DOI
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.
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.
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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