Samms, Gemma Louise, Ponting, Chris P · BMC public health · 2025 · DOI
This study examined NHS records from England to understand how many people have ME/CFS and whether diagnosis is fair across different groups. Researchers found that about 100,000 people in England have been officially diagnosed with ME/CFS, but the actual number may be much higher—around 404,000 in the UK. The diagnosis rates varied significantly depending on gender, age, ethnicity, and where people live, suggesting some patients are being missed.
This study provides crucial evidence that ME/CFS is substantially underdiagnosed, particularly in non-White populations, older individuals, and deprived areas—highlighting systemic barriers that delay care. Accurate prevalence estimates are essential for policy makers to allocate healthcare resources appropriately and for the ME/CFS community to advocate for better recognition and support.
This study does not prove why disparities exist—it documents unequal diagnosis but cannot establish whether differences reflect true disease prevalence variations, clinician bias, healthcare access barriers, symptom presentation differences, or other factors. It also does not establish causation for the observed demographic patterns and relies on coding accuracy, which may vary across healthcare settings.
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.