How many people have ME in the UK?
There are an estimated 1.3 million people in the UK with ME or ME-like symptoms, including post-exertional malaise: the hallmark symptom of ME.
The figures vary greatly because of issues with misdiagnosis and recording (coding) of diagnosis. Additionally, there are different criteria across different countries and this can impact on the accurate collection of data. Because we are unable to identify the exact number of people diagnosed with ME (incidence data), we use prevalence data which is an estimate.
More research is needed to provide more accurate data which will inform policy and commissioning.
NHS England state there are 250,000 people in the UK with ME/CFS but this figure is an estimate and it is a very old one. Action for ME believes this figure is significantly below the real figure.
A recent preprint by Samms & Ponting (2024) used hospital data to estimate a lifetime prevalence of 0.6% or 390,000.
This is the highest estimate to date with an evidence base. However, it excludes anyone who hasn’t been admitted to hospital as well as those whose diagnosis have been recorded differently from the ICD code G93.3 (the code used to record a diagnosis of ME). It will also include some with long Covid seen in outpatients if they received the same ICD code for their diagnosis. This study is awaiting peer review by other scientists. Once received, this may inform the numbers currently being used.
Other studies may have higher estimates but they are based on people with ME self-selecting or self-reporting of ME (ie with no evidence of diagnosis).
Other charities are using a range of figures up to 700,000 (ME Action).
Improvements in diagnosis and recording of diagnosis are essential as this will enable us to have more accurate data and will give clinicians and policy makers a better understanding of the level of need .
ME and long Covid
Numbers for people with long Covid fluctuate. Research by Davis et al (2023) identified that around 50% of people with long Covid have symptoms that directly mirror ME (including the key-defining feature of ME, post-exertional malaise). Using figures produced in 2023 for people with long Covid, this would mean that there is around 1.1m people with it.
What does this all mean?
If you add in the estimates of people with ME to the estimates of people with long Covid who have symptoms that mirror ME, including post-exertional malaise, you reach the 1.3m estimated figure of people in the UK with ME or ME-like symptoms.
