From the #MEAction website: Questions to Ask Prospective MPs About ME/CFS https://www.meaction.net/2024/06/04/questions-to-ask-prospective-mps-about-me-cfs/
Pretty much the discussion I had with the candidate I’m in contact with. I referred to the Delivery Plan as a minimum product that must be built on to deliver significant change, particularly thinking of very severe ME/CFS people.
The question I would ask MEAction is why they feel making this claim, "In the UK, there are an estimated 700,000 to 1.2 million people with ME", is useful.
Hi @Andy , Author of that piece here. We expect most candidates who knock on doors to have little to no knowledge of ME, so providing a figure demonstrates the scale of the problem and conveys the severity of the issue. Without this context, it’s easy for a politician to nod along and dismiss it as a minor concern. The range in the estimate (700,000 to 1.2 million) also underscores the significant under-investment in research and study of ME, contributing to the variability in reported figures. For reference, we used our calculated 700k number [1] and the ME Association’s "more than 1.2M" estimate. Our aim was to represent all people with ME, regardless of the specific figure used, to ensure the questions resonate broadly with those ready for a candidate knock. [1] https://www.meaction.net/2024/02/01...-update-prevalence-figures-based-on-new-data/
Unfortunately I feel that providing a figure that misrepresents the likely scale is as unhelpful. Issues with the CDC survey from the States that is used to calculate that number can be found here, CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al At a total guess, this must be an extrapolation by the MEA from Long Covid figures and the concept that around 50% of them meet ME/CFS criteria; certainly not a figure that I would rely on.
I'm sure there is a discussion I've not seen on s4me on what is considered a better number to use? Anything we claim, we need to be able to back up in some way and these are the best figures we've got with the poor data available. Are they wrong? Almost certainly not 100% accurate, but they don't seem to be totally out of the ballpark, especially considering the age of the 250k figure and as you say the number of LC who meet the criteria.
Discussion on this thread: https://www.s4me.info/threads/conce...-figures-for-me-long-covid.38250/#post-528502
The ME Association Template Letter: General Election, https://meassociation.org.uk/2024/06/the-me-association-template-letter-general-election/ "ME/CFS is very disabling neurological condition that affects at least 250,000 people in the UK, Many more people have developed ME/CFS during the past four years as a result of catching Covid 19." Even though this is more reasonable as they don't quote "more than 1.2m", they still provide no evidence for the second part of that sentence.
