Question
How many people in the UK have ME/CFS?
Answer
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.
We have published a booklet on these prevalence estimates, summarising the latest research and historic estimates, how many people in the UK have ME/CFS, and the impact of Covid-19 on this.
Please Note: Prior to this new research, the estimate of around 250,000 people with ME/CFS in the UK was used for many years by charities, the NHS, MRC etc.
This estimate was based on limited research evidence on epidemiology at the time and the conclusion in the 2002 Chief Medical Officer’s Working Group report that the prevalence of ME/CFS was somewhere between 0.2% and 0.4% (ie 2 to 4 per thousand) of the population.
Given the fact that there has been a significant increase in population over the past 20 years, and there are a considerable number of people who have developed ME/CFS following Covid-19, alongside other factors, the new current estimate is significantly higher, see above.
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MEDICAL DISCLAIMER
We recommend that the medical information is discussed with your doctor. It is not intended to be a substitute for personalised medical advice or treatment. You should consult your doctor whenever a new symptom arises, or an existing symptom worsens. It is important to obtain medical advice that considers other causes and possible treatments. Do not assume that new or worsened symptoms are solely because of ME/CFS or Long Covid.