We have imo contradictory position where we have enough evidence that the need for early diagnosis and careful management is recognised globally & in most uk literature as being crucial to provide “best outcomes” (or conversely, prevent bad outcomes) but no clear recognition that nhs failure to do this until recently, with patient blaming narratives, contraindicated treatment approaches and sheer lack of belief and appropriate support has contributed to the current approx uk level of m.e disability of 75% can’t work, 25% house or bedbound
UK ME Association 2025: Prognosis, Permanency and Quality of Life in ME/CFS
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In less official literature of the Xmas appeal,
The ME association seem more happy to infer connection between decades of poor nhs management & the chronic substantial disability of the ME community who are way beyond needing a period of convalescence : “There are over 400,000 people in the uk with me. years of misdiagnosis and poor treatment have led to severe illness, and sadly, sometimes death”
Next step - using this as basis of call for increased and fair research funding.
donate.biggive.org
The ME association seem more happy to infer connection between decades of poor nhs management & the chronic substantial disability of the ME community who are way beyond needing a period of convalescence : “There are over 400,000 people in the uk with me. years of misdiagnosis and poor treatment have led to severe illness, and sadly, sometimes death”
Next step - using this as basis of call for increased and fair research funding.
When Rest Isn’t Enough: Cracking ME’s Energy Crash – Big Give
We’re raising £40,000 to fund a research project investigating the crushing exhaustion people with ME face after activity. This study will uncover what goes wrong in their muscles during Post-Exertional Malaise; bringing us closer to diagnosis, understanding, and hope for treatment.…
donate.biggive.org
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MrMagoo
Senior Member (Voting Rights)
I still would like treatment to undo the CBT the NHS gave me, which it no longer recommends.In less official literature of the Xmas appeal,
The ME association seem more happy to infer connection between decades of poor nhs management & the chronic substantial disability of the ME community who are way beyond needing a period of convalescence : “There are over 400,000 people in the uk with me. years of misdiagnosis and poor treatment have led to severe illness, and sadly, sometimes death”
Next step - using this as basis of call for increased and fair research funding.
When Rest Isn’t Enough: Cracking ME’s Energy Crash – Big Give
We’re raising £40,000 to fund a research project investigating the crushing exhaustion people with ME face after activity. This study will uncover what goes wrong in their muscles during Post-Exertional Malaise; bringing us closer to diagnosis, understanding, and hope for treatment.…
It’s been an MEA favourite topic since Dr Charles Shepherd had That positive muscle biopsy test that I don’t think there was replication of. I thought that the muscle biopsy research was back on the hot list with the wurst study? How much a £40 000 imaging study can show, i don’t know. Presumably it’s dr Morton & better than hampers.
Kitty
Senior Member (Voting Rights)
As I understand it, lifetime prevalence means the percentage that would get something if they all lived to the standard life expectancy. And of course some people die of other things before they reach life expectancy--but if they didn't, then they would get ME. So Jo is correct--a .06 lifetime prevalence does not mean .06 have it now. It seems to be mis-reading the data to indicate that that number have it now. But...I could be wrong.
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I checked in with Chris about this. He pointed out that the number comes from a different paper that found a point prevalence estimate (current prevalence, as opposed to lifetime prevalence) of 410,000. So yes, the lifetime prevalence figure would not represent current (point) prevalence. but the point prevalence study does. He explained why the numbers of the two studies don't correspond fully. Below is his answer:
This is from the last paragraph before the Conclusions in: https://pmc.ncbi.nlm.nih.gov/articles/PMC12012970/
'The estimates are extrapolations from a population (in Cornwall and the Isles of Scilly) which has the highest rate of diagnosis England-wide. This population is also the oldest (and the Whitest), and extrapolating to a younger (on average) population would then overestimate the point prevalence there. So, we took up the more conservative position of estimating the lifetime prevalence across the whole of the UK.'
Note that the (unknown) lifetime prevalence in Cornwall and the Isles of Scilly is necessarily higher than the point prevalence we reported there. If it were, say, 20% more then our UK-wide estimate would also be 20% higher. This is why I say that our estimate is more “conservative”.
“Isn't it wrong to say there are currently 400,000 people with it”. [That was my question-DT] Yes, but there are wide margins of error, and I think the error lies within these wide margins.
However, our second estimate (of 410,000 https://openresearch.nihr.ac.uk/articles/5-39) is of point prevalence in the older UK Biobank population and so with this estimate it is NOT wrong to say that there are currently 400,000 (or so) people with it in the UK. This inflates a lower estimate by including 25% who were bed/housebound and couldn’t participate in UK Biobank.
To make sure I understood, I paraphrased it back to him this way:
"It's not accurate to use the lifetime prevalence data to suggest current point prevalence, but given different data/methods, the second study provided a point prevalence of around the same number (around 400,000) that the other study found to be lifetime prevalence.
"But as you suggest, the lifetime prevalence in Cornwall etc was conservative, so in reality the real numbers might be higher. And given the second study's point prevalence, it's ok to use the 400,000 number for current estimates of prevalence, whereas if it were just the Cornwall study alone, it would be problematic.
"Is that more or less what you're saying?"
He confirmed that's more or less what he was saying. So there it is. It's inaccurate if the basis were the lifetime prevalence estimate, but it's accurate because the basis is the point prevalence estimate.
Kitty
Senior Member (Voting Rights)
Thanks for explaining this Dave (and Chris) because I was fuzzy on the difference.
It seems the usual terminology is point prevalence for a snapshot, and period prevalence for any defined period (eg, lifetime).
My knowledge is inching forward, one word at a time!
pretty much, yes.
Jonathan Edwards
Senior Member (Voting Rights)
That makes sense.
For me the main problem is that we know that diagnostic ascertainment is completely rubbish and so trying to be precise is a false quest. And I see more dangers with overestimating than with underestimating. Part of that is that if the claim is unrealistically high then there is disbelief - typified by the claims that the prevalence of fibromyalgia is 8% or hEDS 2%. But my main worry is that casting the diagnostic net wider will dilute any chance of picking up specific biological traits that are confined to more severe cases and which may be our best bet for working out what is going on.
That said, if the estimate of a point prevalence of 0.6% really is a point prevalence I think it may be realistic in terms of ME/CFS of all degrees of severity, as judged by social experience.
ADHD, being one of the poster children for that definitional issue.