Higher rates of myalgic encephalomyelitis (ME) may exist in the UK than previously thought, researchers have suggested, who found that people with the condition experience poor health-related quality of life.
Researchers from the University of Edinburgh found that there are almost two-thirds more people living with ME, or chronic fatigue syndrome (CFS), than previous estimates suggest. The new figures suggest that approximately 404,000 people are affected.
However, the experts warn that diagnosis was ‘a lottery’ depending on a person’s ethnicity and geographical location.
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The findings are published in BMC Public Health.1
A lack of awareness of the condition’s prevalence can cause barriers to diagnosis, and many people with the condition experience extensive diagnostic delays. Symptoms include post-exertional malaise, which worsens dramatically with time, brain fog and extreme energy limitation, which does not improve with rest. There is currently no single diagnostic test or treatment to cure the condition.
The researchers analysed Hospital Episode Statistics data from over 62 million people in England, routinely collected by the NHS, from the Feasibility Self-Service of NHS DigiTrials. The data was used to stratify individuals with the International Classification of Diseases (ICD-10) code most closely linked to ME/CFS symptoms (G93.3), according to age, self-reported gender and ethnicity, GP practice and a person’s NHS England Integrated Care Board (ICB).
Between April 1989 and October 2023, about 100,000 people in England were diagnosed with ME/CFS. Of those diagnosed, 79,445 were women and 20,590 were men, indicating that women were nearly four times more likely to be diagnosed than men. The gender diagnosis gap increased to six to one for women in their 30s and 40s.
The findings show a strong ethnicity bias. People of Chinese, Asian/Asian British, and black/black British ethnicities are substantially less likely to be diagnosed with ME/CFS than white British people. White individuals are approximately fivefold more likely to be diagnosed with ME/CFS than others. This pattern is consistent across all regions and for both women and men, and is stronger than in other common diseases such as dementia or depression.
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Researchers also found that diagnosis rates varied across the 42 NHS ICBs, with Cornwall and the Isles of Scilly having the highest rates, while north-west and north-east London reported the lowest. For women, the range of the diagnosis rate was between 0.086 per cent and 0.82 per cent and 0.024 per cent to 0.21 per cent for men, depending on location.
Professor Chris Ponting, from the Institute of Genetics and Cancer at the University of Edinburgh, said: ‘The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, depending on where you live and your ethnicity. Nearly 200 GP practices – mostly in deprived areas of the country – have no recorded ME/CFS patients at all. The data backs up what many people with ME/CFS say: that they feel invisible and ignored.’
Gemma Samms, ME Research UK-funded PhD student, added: ‘People struggle to get diagnosed with ME/CFS. Diagnosis is important because it validates their symptoms and enables them to receive recognition and support. Our results should now lead to improved training of medical professionals and further research into accurate diagnostic tests.’
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Reference: 1. Samms, GL, Ponting, CP. Unequal access to diagnosis of myalgic encephalomyelitis in England. BMC Public Health 25, 1417 (2025). https://doi.org/10.1186/s12889-025-22603-9
