NHS data for England shows middle age women and white people are much more likely to develop devastating myalgic Encephalomyelitis (ME) – otherwise known as Chronic Fatigue Syndrome
Two-thirds more people are living with debilitating ME than was previously thought, an NHS review has found.
By middle age, women are six times more likely to have developed myalgic Encephalomyelitis (ME) – otherwise known as Chronic Fatigue Syndrome – than men. The little-understood syndrome is the subject of an NHS review following the landmark inquest of Maeve Boothby O’Neill last year. The 27-year-old died unable to speak and malnourished, having begged doctors for help to eat when her body shut down.
A review of NHS data in England indicates that 404,000 people have ME, which can leave sufferers bedbound with extreme fatigue. This is up 62% on the previously accepted figure of 250,000. The analysis by Edinburgh University also found white people are almost five times more likely to be diagnosed than other ethnicities.
Study lead Professor Chris Ponting, of the MRC Human Genetics Unit at the university, 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.”
ME sufferers have fought resistance from the medical establishment for decades due to a suspicion that the syndrome may be partly psychological. Symptoms have similarities with Long Covid and some suspect a virus may trigger the disease but scientists still do not know how.
The review by Edinburgh University, published in medical journal BMC Public Health, comes after Maeve Boothby O’Neill’s death sparked a NHS review of the treatment of ME. Having suffered from ME since she was a teenager, by her mid-20s Maeve was left bedbound, unable to speak and malnourished. She begged for help to eat but doctors were unable to treat her illness. She chose to leave hospital and die in her home “in the care of those she loved” in 2021.
Last October the coroner looking into the death Deborah Archer issued the first ever “prevention of future deaths report” for ME. She called on Health Secretary Wes Streeting and the NHS to take urgent action to address the “non-existent” care for ME and lack of funding for research.
ME’s key feature is called “post-exertional malaise” and is a delayed dramatic worsening of symptoms following minor physical effort, such as a walk to the shops. 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 analysis of NHS data from 62 million people in England found that lifetime chances of developing ME are up to 0.92% for women and 0.25% for men. Previous lower estimates came from the UK Biobank research project which contains disproportionately more people who are in better health.
Prevalence varied 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. Women are six times more likely to have it than men by middle age.
Researcher Gemma Samms, 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.”
The NHS last year announced an assessment of myalgic encephalomyelitis (ME) services across England after the death of Maeve Boothby O’Neill The National Institute for Health and Care Excellence (Nice), which provides advice to improve healthcare, is also re-examining its guidance on feeding support for people with severe ME. Education of medical professionals about patients is also being ramped up.
Andrew Gwynne, the health minister, had pledged to improve research “with the aim of better understanding the causes, identifying new treatments and improving patient outcomes”.
The new study was funded by the Government-backed National Institute for Health and Care Research, the Medical Research Council and the charity ME Research UK.