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https://www.thetimes.com/article/04...VlnwlpDHDE7hIHg3z2_aem_anu2A8zLyO7oAVoom5-vtg
ME sufferers ‘feel invisible and ignored’ amid lottery of NHS care
A study found that 404,000 people are living with the illness, two thirds more than previously thought, with a 50-fold variation in diagnosis rates
Eleanor Hayward
, Health Editor
Monday April 21 2025, 8.20pm, The Times
NHS
Maeve Boothby O’Neill, who died of ME aged 27, with her father, the Times writer Sean O’Neill
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More than 400,000 people in England have myalgic encephalomyelitis (ME), according to a new study highlighting how those with the illness are “ignored” by the NHS.
Researchers at the University of Edinburgh analysed NHS records from 62 million people to come up with the best estimate yet of the prevalence of ME, also known as chronic fatigue syndrome (CFS).
They concluded that 404,000 people are living with the illness, a figure that is two thirds higher than previously thought, and many are being “completely overlooked”.
• NHS to review ME services after death of Maeve Boothby O’Neill
The study highlights the vital need for funding for medical research and new specialist NHS services, amid delays to a government plan aimed at improving care for people with ME.
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Women are nearly four times more likely to be affected by ME, and about three quarters of people living with the condition have not had a formal NHS diagnosis, the study said.
It identified a “lottery” in care for the disease, with a 50-fold variation in diagnosis rates among different regions, age groups and ethnicities.
White people were almost five times more likely to be diagnosed than those from ethnic minority groups, and there is a huge gap between rich and poor areas.
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Professor Chris Ponting, from the University of Edinburgh’s Institute of Genetics and Cancer, the study author, 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. The data backs up what many people with ME/CFS say: that they feel invisible and ignored.”
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 — which had no recorded ME patients at all, highlighting the need for greater training and awareness for doctors.
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Ponting said that, when it came to NHS care, “it’s almost as if a lot of people with ME do not exist” and many patients had to go “time and time again” to their GP to get a diagnosis.
“I cannot think of another disorder where there are so many hurdles that people who are unwell have to overcome to get a diagnosis and proper care from the NHS,” he said.
Professor Chris Ponting and Gemma Samms of Edinburgh University, the authors of the study
He called for the findings to be a “wake-up call” to the government to commit to providing more funding for ME research and treatment, noting that ME currently costs the UK economy billions of pounds.
“There is a sound economic argument for spending more money on research. If just a fraction of people who are unwell with ME were able to go back to work by dint of that research, that would be a good financial outcome.”
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The study, published in BMC Public Health, found that 100,000 people in England have been diagnosed with ME/CFS, according to NHS hospital admissions statistics.
However, prevalence varies significantly. If people across England were to have the same access to a diagnosis as in Cornwall and the Isles of Scilly, which has the highest recorded diagnosis rates, then it would mean 404,000 people had the condition. This supersedes a previous estimate of 250,000, based on UK Biobank data from nearly 20 years ago.
Gemma Samms, a PhD student at Edinburgh funded by ME Research, a study author, 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.”
ME is a complex neurological disorder thought to be triggered by a viral infection. It leads to symptoms including extreme fatigue, brain fog and pain. Severe cases can be fatal and about one in four patients are housebound. There is currently no diagnostic test or cure.
Maeve Boothby O’Neill died in 2021 of malnutrition as a result of ME
Inadequate NHS care was highlighted last year at the inquest of Maeve Boothby O’Neill, 27, who died in 2021 of malnutrition as a result of ME.
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The coroner issued a prevention of future deaths report highlighting “nonexistent” specialist care and a lack of funding for ME research, warning that there would be further deaths unless the government and NHS took action.
In 2022 Sajid Javid, then the health secretary, committed to creating a new “delivery plan” to improve research and treatment for ME, but the publication has been delayed under five health secretaries. The Labour government has said it will be published “in the coming months”, but ministers said they currently have no plans to allocate extra funding.
The new study was funded by the National Institute for Health and Care Research, the Medical Research Council and the charity ME Research UK.
