Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based on a recent US survey.
Unfortunately, all prevalence estimates for ME are of limited accuracy. This is due to a range of factors including, but not limited to, uncertainty around diagnosis, lack of confidence among healthcare professionals, and possible confusion with overlapping conditions. However, it is necessary for our campaigning work to decide on a figure, and ideally one that is informed by the latest data.
The Center for Disease Control (CDC) has published results of a survey which provides data following the onset of the COVID-19 pandemic and is the most recent credible data we are aware of. Importantly, it will include any increase in the prevalence of ME due to the pandemic, as well as many with Long Covid, due to the overlaps between the two conditions.
The US survey results show that 1.3% of adults in the US have ME/CFS. This is significantly higher than the 0.4% estimate derived from UK Biobank data before the COVID-19 pandemic and used in the NICE guideline on ME/CFS.
Applying these new estimates to UK populations gives estimates of 700,000 people with ME in the UK and 58,000 in Scotland. Prior to this we were using figures of 250,000 and 22,000 respectively.
The survey did not include children with ME, which is a common shortcoming of ME research. We urgently need more information about the prevalence of ME in children across the UK and globally, and this is an issue our groups will keep campaigning on. We would also welcome the replication of this survey in the UK population.
To understand more about the calculations made, you can read our full paper on these figures.