Researchers find many more ME/CFS patients in England than previously reported

There are two-thirds more people in England with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) than previously thought, researchers have reported.

A revised estimate predicts there are around 404,000 people affected by ME/CFS – 62% higher than the previously accepted figure of 250,000.

The team at 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. 

Their analysis looked at the data by gender, age, and ethnicity, and grouped it by different areas of England.

It suggested that lifetime prevalence of ME/CFS may be as high as 0.92% for women and 0.25% for men. 

The study 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.

A previous estimate of 250,000 came from the UK Biobank population which contains disproportionately more people who are in better health, the team said.

Peak age for the condition in women was 50 years and a decade later for men, with women six times more likely to have it than men in middle age, the study showed.

Cornwall and the Isles of Scilly had the highest rates of ME/CFS, while North West and North East London reported the lowest. 

The study found that of 6,113 English GP practices, two-thirds had at least eight patients registered as having ME or CFS. However, there were 176 practices – mostly in deprived areas – that had no recorded patients at all.

It suggests that getting an ME/CFS diagnosis is a ‘lottery’ that depends on ethnicity and location, they concluded in BMC Public Health. 

Better training of medical professionals and research into identifying accurate diagnostic tests should be a priority, they added. 

A recent report found many NHS patients with ME/CFS and long Covid had faced significant delays in diagnosis and had reported low satisfaction with specialist services.

Study leader Professor Chris Ponting, chair of medical bioinformatics and principal investigator at the MRC Human Genetics Unit at the University of Edinburgh said: ‘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.’

Dr Charles Shepherd, medical advisor at the ME Association, said: ‘Over the past year, the ME Association has been discussing with charity colleagues and other organisations how the current estimate of around 250,000 people with ME/CFS is almost certainly an underestimate given the growth in population since this figure was first used and the large number of people who now have post-Covid ME/CFS.

‘This new research does now provide some important new evidence that the true figure is around 400,000.

‘Consequently, we will now be discussing with our charity colleagues to see if agreement can be reached on a new prevalence figure based on these research findings.’