Over 150,000 more people inEnglandare living with chronic fatigue syndrome (CFS) than was previously estimated, according to a study that highlights the “postcode lottery” of diagnosis.
The research, published in the peer-reviewed journalBMC Public Health, involved researchers from the University of Edinburgh analysing NHS data from over 62 million people in England to identify people who had been diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome or post-viral fatigue syndrome.
The data was examined by gender, age and ethnicity, and grouped it by different areas of England.
ME, also known as chronic fatigue, is a long-term condition with its main symptoms being extreme fatigue, brain fog, and issues with sleep. The condition’s key feature is known as post-exertional malaise, which is a delayed dramatic worsening of these symptoms following minor physical effort. There is currently no diagnostic test or cure for the disease and its causes are unknown.
The findings showed that the lifetime prevalence of chronic fatigue for women and men in England may be as high as 0.92% of the population for women, and 0.25% for men. This is equivalent to about 404,000 people overall.
The previous estimate of 250,000 people living with chronic fatigue in England was based on data from the UK Biobank population, which researchers said disproportionately contains more people in better health.
The study, funded by the National Institute forHealthand Care Research, also revealed stark ethnic inequalities relating to chronic fatigue diagnoses rates. White people with ME in England were almost five times more likely to be diagnosed with the condition than other ethnic groups.
People from Black and Asian backgrounds were least likely to be diagnosed with the condition, with rates between 65% and 90% lower than their white counterparts.
There were also regional disparities across England, with Cornwall and the Isles of Scilly having the highest rates, while the north-west and north-east London had the lowest.
These regional disparities also indicated there was a “postcode lottery” with regard to the likelihood of receiving a chronic fatigue diagnosis. The study found that of 6,113 large 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 ME patients.
Prof Chris Ponting, study lead at 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.”
Gemma Samms, an ME Research UK-funded PhD student, 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.”