Question

It seems that almost everyone involved with ME states that that there are around 250,000 people in the UK who have ME/CFS. This figure has been used for many years and it must now be out of date given the increase in population and all the new cases linked to Covid 19.

Isn’t it time to update this figure?

Answer

As you say, the estimate of around 250,000 people with ME/CFS in the UK has been used for many years by the 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, I would agree that this estimate is almost certainly a significant under-estimate.

So the ME Association is currently discussing with our other charity colleagues, and research colleagues – including those at the London School of Hygiene and Tropical Medicine (LSHTM) – about how we could produce a more accurate and up-to-date figure that would also be accepted by the NHS, etc, because there is no point in different organisations producing different new estimates.

There is a briefing paper on the MEA website which reviews the current situation, and what is being done, in more detail: Prevalence: How many people have ME/CFS in the UK?

ME/CFS and Long Covid:

There has clearly been a rise in the number of people developing post-Covid or Long Covid ME/CFS during the past 4 years, i.e., people whose symptoms match the criteria for ME/CFS. However, the prevalence data remains very speculative. Two research studies from America estimated that the number of people with Long Covid who meet with ME/CFS diagnostic criteria varied between 40% and 60%. But this cannot be extrapolated to conclude that approximately 50% of almost 2 million people who self-reported as having some form of Long Covid in the UK, might have ME/CFS.

Jason et al. ME/CFS and Post-Exertional Malaise among Patients with Long COVID

See More: Prevalance: Population Estimates