E2 ModerateModerate confidencePEM ?Cross-SectionalPeer-reviewedMachine draft
Unequal access to diagnosis of myalgic encephalomyelitis in England.
Samms, Gemma Louise, Ponting, Chris P · BMC public health · 2025 · DOI
Quick Summary
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.
Why It Matters
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.
Observed Findings
- Female-to-male ratio of 3.88:1 overall, peaking at approximately 6:1 in individuals in their 4th and 5th decades of life
- Prevalence varied widely across 42 ICBs: 0.086–0.82% for females and 0.024–0.21% for males
- White individuals were approximately 5-fold more likely to be diagnosed with ME/CFS compared to other ethnicities; Black, Asian, and Chinese groups showed particularly low diagnosis rates
- 3% of active English GP practices (176 practices) had no registered ME/CFS patients
- Other-than-white individuals, older females (>60 years), older males (>80 years), and people in areas of multiple deprivation showed disproportionately low diagnosis rates
Inferred Conclusions
- ME/CFS is substantially underdiagnosed in England, with estimated lifetime prevalence approximately 0.92% in females and 0.25% in males (≈404,000 UK individuals overall) compared to the 0.16% capture in routine NHS coding
- Diagnosis of ME/CFS is inequitably distributed by gender, age, ethnicity, geographic location, and socioeconomic status, suggesting systemic barriers or disparities in clinical recognition
- Non-White ethnic groups experience particularly severe diagnostic bias relative to other common diseases, pointing to potential structural or cultural factors affecting diagnosis
- Accurate prevalence estimates are essential for public health policy and resource allocation, as current NHS coding substantially underestimates disease burden
What This Study Does Not Prove
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.
Tags
Method Flag:Weak Case DefinitionSex-Stratified