There are almost two-thirds more people living with ME/CFS in England than previously thought according to a new study. Around 404,000 people in England are estimated to be affected by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) - a 62% rise from the previously accepted figure of 250,000.A study by researchers at the Institute of Genetics and Cancer (IGC) also found that 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.They say these findings highlight how receiving a ME/CFS diagnosis is a “lottery” depending on ethnicity and location. Improved training of medical professionals and research into identifying accurate diagnostic tests for the long-term debilitating illness should be prioritised as a result, they add. A key feature of ME/CFS is post-exertional malaise - a delayed dramatic worsening of symptoms following minor physical effort. Other symptoms include pain, brain fog and extreme energy limitation that does not improve with rest. Causes are unknown and there is currently no diagnostic test or cure. The researchers used NHS data from more than 62 million people in England to identify those diagnosed with ME/CFS or post-viral fatigue syndrome. They examined the data by gender, age and ethnicity, and grouped it by different areas of England.The study found that lifetime prevalence of ME/CFS for the population of women and men in England may be as high as 0.92% and 0.25%, respectively, or approximately 404,000 people overall. The previous estimate of 250,000 came from the UK Biobank population which contains disproportionately more people who are in better health. The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, depending on where you live and your ethnicity. There are nearly 200 GP practices – mostly in deprived areas of the country – that 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. Professor Chris Ponting Study lead, MRC Human Genetics Unit 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. Gemma Samms ME Research UK-funded PhD student The study is published in the medical journal BMC Public Health. It was funded by the National Institute for Health and Care Research, the Medical Research Council and the charity ME Research UK. Image credit: DMP via Getty Images LinksRead the full study: https://doi.org/10.1186/s12889-025-22603-9Chris Ponting Research Group: Chris Ponting Research Group | Institute of Genetics and Cancer Tags 2025 Publication date 22 Apr, 2025
