Over the past few months ME Research UK has published a number of articles tackling the importance of prevalence rates of ME/CFS in the UK, and analysing the research behind a number of oft-quoted figures. Where there have been weaknesses, these have been been pointed out as well as showing why rates from one country or healthcare system cannot merely be applied to another state.
Since carrying out the review, the ME Research UK-funded research at the University of Edinburgh has been peer-reviewed and published – prior to this, it was a pre-print and liable to be amended. Its findings are consequently capable of being relied upon.
ME Research UK considers that the research evidence is now sufficiently robust to discontinue future use of the NICE guideline figure of 250,000. From now on, the following will be used – and we justify each part of the sentence briefly as follows –
ME Research UK-funded research suggests that in excess of 400,000 people in the UK have ME/CFS.
ME Research UK – funded research: New estimates of ME/CFS prevalence in the UK by Gemma Samms and Professor Chris Ponting – part of Ms Samm’s ME Research UK-funded PhD level research.
Suggests: The word ‘suggests’ is used to take into account that the updated prevalence figure is an estimation with several key limitations. The limitations include but are not limited to:
- The medical records are for a diagnosis for G93.3 – the medical code for “post viral fatigue syndrome” (ICD-10: G93.3), the diagnostic code which, according to the authors, “best reflects ME/CFS symptoms” – rather than ME/CFS specifically, and it is possible that not all those with a G93.3 diagnosis would meet more stringent ME/CFS diagnostic criteria.
- The estimate is for the number of people in the UK with a diagnosis of the medical code for “post viral fatigue syndrome” (ICD-10: G93.3), the diagnostic code which, according to the authors, “best reflects ME/CFS symptoms”.
- Although the prevalence rates were calculated using data for England were extrapolated by the authors to provide an estimate of the number of people in the UK with the diagnostic code G93.3, prevalence rates vary by location, and the rates observed in England may not reflect those in Scotland, Wales or Northern Ireland.
In excess of 400,000: In the paper, the researchers estimate that 403,922 people (83,626 men and 320,296 women). 400,000 is rounded for ease and for convenience of users.
People in the UK: Although the rates in the study were calculated for people in England, the researchers applied them to the UK population as at 2023.
Have ME/CFS: The researchers state that “Lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively, or approximately 404,000 UK individuals overall (0.6%).”
The word ‘suggests’ used previously also covers the fact that the estimate is based on the diagnostic code with symptoms matching ME/CFS, rather than ME/CFS cases defined using the relevant diagnostic criteria.
ME Research UK will now examine the research which points to a further increase in numbers to include those who could be diagnosed with ME/CFS as a consequence of symptoms arising from a Covid infection. The aim is to delve into the figures, explain the research and its limitations, with a view to arriving at a research-justified position.
