#MEAction UK and Scotland update prevalence figures based on new data

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.

Facebook
Twitter
WhatsApp
Email

3 thoughts on “#MEAction UK and Scotland update prevalence figures based on new data”

  1. I’m confused by these figures as Scotland is part of the UK. Does that mean there’s likely to be 758,000 ME sufferers in the UK in total? Can you please clarify. That’s a massive jump in numbers

    1. #MEAction Scotland

      Hi Bekky, apologies that this wasn’t clear. The total figure for the UK is 700,000 people with ME. The 58,000 people in Scotland are already included in the UK figure because, as you say, Scotland is part of the UK. We have also mentioned Scotland separately because health is devolved in Scotland, so that more specific figure will be used by #MEAction Scotland when they are engaging with Scottish policy and bodies. Thanks.

  2. Sorry to ask but do these new figures take into account the 45 or 54%(depending what research papers you look at) of Long Covid patients who would now meet the diagnostic criteria for ME/CFS please? Thank you.

Comments are closed.

Latest News

You’re Invited: The Beth Mazur Innovation Prize Fundraiser

You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST. Beth Mazur, who co-founded #MEAction was a kind and compassionate human being. She cared deeply about the ME and the Long COVID communities. She also cared deeply about innovation, new creative ways to solve problems that

Read More »
rectangle image with a purpleish marble background. In the center is a blue square with the words a very modified movement class - nov 15th-. the #MEAction logo and nourish therapeutic yoga logo at the bottom.

A Very Modified Movement Class on 11/15

Join #MEAction for our final very modified movement class of the year on Friday, November 15th at 11am PST/2pm EST/7pm GMT. This class has been crafted specifically for people with ME. This 30 minute class will be hosted virtually. We are, once again, thrilled to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga, who has

Read More »
A photo of a blue background with a marker pen drawing of an arrow hitting a target surrounded by the words strategy, plans and goals. A red marker pen is in the bottom right corner and the ME Action Scotland logo is at the top.

#MEAction Scotland publishes refreshed strategic priorities

#MEAction Scotland has refreshed and updated its strategic priorities for the period 2024-2026, in anticipation of the expected Scottish Parliament elections in May 2026. We continue to work towards our vision of a Scotland where health and social care professionals, politicians and policy makers, and the general public understand and support people with ME and

Read More »
Scroll to Top