**Trigger Warning: Upsetting content**
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, The Times
Summary
- New research from the University of Edinburgh estimates that over 400,000 people in England are living with ME/CFS—significantly higher than the long-quoted figure of 250,000—highlighting that many are being “completely overlooked” by the NHS.
- The study reveals stark regional disparities in diagnosis and care, exposing what’s been described as a “lottery of NHS care” for ME/CFS patients depending on where they live.
- The ME Association welcomes the findings, noting that the data provides much-needed evidence to support updating the official prevalence figure, and this will be discussed further with charity colleagues and other organisations.
An article from The Times, published on April 22nd, highlights new research into the ‘lottery of NHS care' experienced by people with ME/CFS, revealing stark disparities in diagnosis and treatment depending on where patients live.
Extracts
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”.
MEA Comment:
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.
But without any sound research evidence it has not been possible to create a new estimate of prevalence that is going to achieve widespread acceptance.
This new research from Professor Chris Ponting and Gemma Samms in Edinburgh 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.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
More Information:
- The Times: NHS to review ME services after death of Maeve Boothby O’Neill | December 6, 2024
Further Coverage:
- The Guardian: Over 150k more people in England have ME than previously thought, study finds | April 22, 2025
- News Medical: Research reveals significant increase in ME/CFS cases across England | April 22, 2025
- Medical Xpress: Myalgic encephalomyelitis/chronic fatigue syndrome cases in England much higher than first projected | 22 April, 2025
- Mirror: ME sufferers ‘feel invisible and ignored' as NHS review shows two-thirds more affected | 22 April, 2025
- Open Access Government: New study reveals over 400,000 people are affected by ME/CFS in the UK | April 23, 2025
- PULSE: Researchers find many more ME/CFS patients in England than previously reported | May 06, 2025