Another piece of evidence, I think, that the commonly used 25% estimate is wrong.
I've just remembered that I was writing a post about this a little while ago. I'm not sure why I didn't post it, and it's a bit off-topic for this thread, but -
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It's commonly said that 25% of pwME are, at any given time, severely affected, a figure that is quoted everywhere. I've been curious about the source of this claim for a while, and suspect that it is wrong. The 25% ME Group
came into existence in 2003 (link) so the estimate necessarily precedes their formation. I then checked the 2002 CMO report, which mentions the 25% figure as an estimate, but doesn't give a source.
I eventually found a paper which did, a paper by Pheby & Saffron (
link to PDF) which states that:
Some 25% or more of people with ME/CFS may be severely ill (Action for ME, 2001)
The reference here is:
Action for ME, 2001. Severely Neglected. London.
This was a membership survey which is no longer on AfME's website, although I managed to obtain a copy of it. I'm not sure if they would object to my uploading it to the forum, but it was a survey that was
distributed to AfME’s 7,529 members in August 2000 of whom 2,338 responded (31%)
I don't think we have a thread on this, being a very old survey. The "severity and impact" section of the summary says -
1. 2,076 (89%) of the respondents (28% of those mailed) replied that they are or have been severely affected (i.e. either bed-ridden or house-bound).
2. Of the 2,338 respondents, 710 (30.4%) are currently severely affected.
3. 110 (4.7%) are very severely affected i.e. “bedridden – totally reliant on others for care”.
4. 957 (41%) reported having been bedridden now or in the past.
5. 1,211 (58%) experienced this level of disability for over a year and 495 (24%) were at this level for over four years.
6. 1,176 (50.3%) replied “yes” to the question “Have you ever felt suicidal as a result of your illness”.
7. Those who have had the illness worse, with the most severe pain, and who have had late diagnosis and management, are the most likely to have considered suicide.
8. 35% of respondents use a wheelchair.
9. 14% described themselves as deteriorating while 25% were improving.
10. 4 out of 5 suffered severe pain as a result of their illness. 29% reported experiencing severe pain much of the time.
Obviously a charity members' questionnaire, while potentially useful information, is not a reliable population-level estimate; it's likely to skew towards those sufficiently badly affected to seek out and join a charity, towards those who agreed with the charity's aims, against those in sufficient financial hardship to pay membership fees, and against those too ill to fill in surveys, amongst other factors. And the survey data doesn't really match '25% severe at any given time'.
I haven't been able to find copies of the members' information that AfME put out about this survey from August 2000, but it was called "Severely Neglected", so I also suspect there was some particular focus on severe patients which, if communicated to their members, could have skewed the results. Other surveys have produced markedly different results.
The survey data from DecodeME - a far larger cohort - is particularly salient. The preprint describes that, in total, 28.7% of participants were mild, 58.2% moderate, 12.4% severe, and 0.8% very severe. The picture did not differ significantly between genders, either (in females: 28.7% mild, 57.9% moderate, 12.6% severe, 0.8% very severe; in males: 28.1% mild, 59.6% moderate, 11.5% severe, 0.8% very severe).
From anecdotal clues, too, I suspect the estimate may be wrong. My old GP (one of the rare sympathetic ones, now sadly retired) told me just before he retired that I was by far the most severely affected patient he had seen in his entire career - and that was back when I would have been classed as the high end of 'moderate' according to the 2021 NICE definition. If I was the worst affected patient he saw in his entire career then he never saw someone into the NICE severe or very severe categories - and I suspect he would have seen far more pwME than most as the local support group at the time recommended him as a GP to those who enquired with them about local provision. That is not evidence but it is telling.
We really need more reliable data. In both CTV3 and SNOMED, used in NHS primary care, there are separate codes for mild, moderate & severe 'chronic fatigue syndrome'. While I suspect very few practices use the severity-specific codes, it may be possible to extrapolate at least to a limited extent from the subset that do, and there has been research conducted on large-scale primary care datasets (e.g. those using the new OpenSAFELY framework). There may be clues in HES datasets. Data linkage based estimates - comparing the number of nationwide diagnoses vs. the numbers of people claiming different types & levels of disability benefits for ME/CFS - may be possible in those countries that have central integrated databases.
In the meantime, I think that the DecodeME estimate (13.2% combined severe & very severe) should supplant the 2001 estimate being, as it is, based on an old charity membership survey.
