Research reveals significant increase in ME/CFS cases across England

There are almost two-thirds more people living with ME/CFS in England than previously thought, a study says.

The new estimate suggests that approximately 404,000 people are affected by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a 62 per cent rise from the previously accepted figure of 250,000.

Researchers 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.

Experts say the findings highlight that 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.

ME/CFS' key feature, called post-exertional malaise, is 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.

Researchers from the University of Edinburgh 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 per cent and 0.25 per cent, 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.

Prevalence of ME/CFS varied widely across England, with Cornwall and the Isles of Scilly having the highest rates, while North West and North East London reported the lowest.

The condition peaked around the age of 50 for women and a decade later for men, with women six times more likely to have it than men in middle age.

Researchers also found that ME/CFS prevalence varies greatly by ethnicity. White people are almost five times more likely to be diagnosed than those from other ethnic groups.

This pattern is consistent across all regions and for both women and men. People of Chinese, Asian/Asian British, and black/black British backgrounds are significantly less likely to be diagnosed with ME/CFS, with rates 90 to 65 per cent lower than white people. The difference is more pronounced than for other conditions like dementia or depression, experts say.

The study is published in 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.

Professor Chris Ponting, study lead from the MRC Human Genetics Unit at the University of Edinburgh's Institute of Genetics and Cancer, 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. 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."

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