In July 2025, the ME Association updated the estimates it uses to gauge prevalence of ME/CFS in the UK, based upon new research from Professor Chris Ponting and Gemma Samms from the University of Edinburgh.
This new booklet summarises the latest research and historic estimates, how many people in the UK have ME/CFS, and the impact of Covid-19 on these estimates.
Booklet extracts:
Latest research suggests a 62% increase on historic estimates for ME/CFS in the UK.
The ME Association has reached agreement with Action for ME that we will each adopt the latest research evidence from Professor Chris Ponting and Gemma Samms at the University of Edinburgh.
This suggests that 403,922 or 0.6% of adults and children in the UK would have a lifetime prevalence of ME/CFS (a 62% increase from historic estimates of 250,000), if there were minimal social and healthcare barriers to a diagnosis.
We have also agreed that we will use a figure of 950,000 (or 1.4%) as an estimate of adults and children in the UK who experienced an infectious trigger of Covid-19 and could meet the diagnostic criteria for ME/CFS (NICE Guideline NG206). This is based on 2023 estimates from the Office for National Statistics (ONS) and will be updated when more evidence becomes available.
Therefore, we feel the estimated prevalence of people with a potential diagnosis of ME/CFS could be as high as 1.35million in the UK (1.14million in England, 38,000 in Northern Ireland, 109,000 in Scotland, and 63,000 in Wales), representing a considerable health burden on the NHS and social care services and reinforcing the need for good quality care and support.
Russell Fleming
Head of Project Development,
The ME Association
More Information:
- Prevalence: Latest research suggests a 62% increase on historic estimates for ME/CFS in the UK | July 4, 2025
