The '25% have severe ME' statistic

Hi All,

I have just had a request from the Department of Health & Social Care policy team for a citation supporting the often cited statistic that 25% of people with ME are severely or very severely affected.

Does anyone have a supported source for this? My first round of searches (ME-paedia etc) have not shown a good source.

Thanks!

 

This paper (https://mdpi-res.com/d_attachment/h...healthcare-09-01331-v3.pdf?version=1634002990) cites another (reference 6: https://journals.sagepub.com/doi/10.1177/1742395316644770) that gives the 25% figure, but I can't access it.

Edit: The 25% figure is quoted in the abstract, but it seems that this study might equate housebound with severe, which might not necessarily be the case.

 

I'm not sure where the figures come from but the DWP handbook 1993 have this
https://www.s4me.info/threads/why-are-the-majority-of-pwme-rarely-mentioned.7732/page-2#post-154185

thread
https://www.s4me.info/threads/homeb...onic-fatigue-syndrome-2021-jason-et-al.18735/

 

I have an idea that the MEA, specifically Charles Shepherd might be able to answer your question @PeterW

I'm not sure why & it could be completely spurious, but i have an idea that i have seen that Q asked on MEA facebook some time ago and he answered in a way that satisfied me (i wasnt the questioner but i remember thinking it was a good question and thinking the answer was reasonable) But my memory of it is vague so I may have imagined if or mixed it up with something else

 

Is this worth trying to justify? Since we know that ascertainment and variation in criteria make it pretty impossible to give a prevalence accurate to better than a factor of two and grading severity is full of caveats all we can usefully say is that a substantial minority are severely affected.



From my perspective as a rheumatoid arthritis physician 'sever or very severe' doesn't seem a very useful tag anyway. We used to have four grades of disability defined largely in terms of being able to work, walk or self-care. In retrospect it would have been more use just to have figures on how many could work, walk or self care. I don't remember having any figures on percentages in each grade but for conditions like ME and RA where there are an unknown number of people wandering around with mild disease, many undiagnosed, it seems pretty hard to know. Much more use to know the absolute number of people with severe disability.

 

Brilliant! Thank you!
Here's a link to the open source PDF: https://europepmc.org/backend/ptpmcrender.fcgi?accid=PMC5464362&blobtype=pdf

 

That you Jonathan. Yes, this is a useful point, however I was given a specific request from Dept of Health, so I was keen to respond to that.

We try hard to communicate the situation of people who are severely affected, noting that they can be invisible, and often can't participate in advocacy, so I suspect that it is in this context that DHSC are trying to communicate the importance of ensuring that any data collection and public engagement is inclusive of the severely affected group, and this is a shorthand way of evidencing that.

 

I think the 'overall number' is an issue to ascertain in the ME/CFS pot (I can think of all sorts of reasons, including how you define that pot), whereas the number for severe and very severe theoretically should be something a health system knows given just how ill people are with it to plan and take it seriously. There are enough that it should serve as a stark situation for the few laypersons who care also.

If they don't have this then it says a lot regarding the issues with care and coding etc? And a database/monitoring of even the most ill.

I also like the idea of shifting to grades as long as they are appropriately described/defined, again it removes misinterpretation.

It may be about CMA-style questioning the 'marketing' (can you evidence that claim) if so they have an issue due to the PR if it has been wrong. From a going-forwards perspective, whilst I get all the arguments about which way to present from various different interests when looking at a narrative of an illness and whether it is bad, I think it is best replaced with a number. For these people their solid existence being acknowledged is important and a number is far better than a % under constant debate due to issues with confirming the 'denominator group'. For marketing purposes it's a number people understand vs 25% of 'what' - and a distraction (and risk, as it could change)?

 

This 2016 study by Leonard Jason, et. al., from DePaul University, found that 25% of ME/CFS patients were confined to their homes due to "severe symptomatology."

This is similar to the ICC criteria which calls "mostly housebound" "moderate" and "mostly bedridden" (and thus presumably "confined to home") is called "severe." "Totally bedridden" (defacto "confined to home") is classified as "very severe."

Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/

[Oops! Just noticed that @InitialConditions also linked to this paper.]

 

It's quoted in MEAction Factsheets e.g. https://www.meaction.net/wp-content/uploads/2018/10/MEAction-UK-Factsheet.pdf

You could ask the moderators if they are aware of members (here) who are involved in MEAction UK and they may be able to advise.

I recall this question coming up before - I'll try to find an answer.

 

Thank you all. I have sent the Department of Health & Social Care team the 'Housebound vs non-Housebound" study, which supports the statistic (even if a small study).
The DoHSC rep seemed happy with it. I believe it is part of their policy development.

We talked a lot about the need to include severely affected people, and suggested conversations via whatsapp / messenger apps, suggesting brief discussion by text over multiple days as a potential option.

 

I struggle most with texts, whatsapp better, messenger even better. if a simple yes/no Q all are fine. the lack of ease in editing and therefore the cognitive load in being succinct given word-finding (and with texts on my phone the autocorrect and scrolling to copy paste) are all factors. I think what I'm saying is I hope they at least do both of those.

 

I would imagine Peter, who is part of Forward ME, has contact details for MEAction UK, who are also part of Forward ME, should he feel a need to get in touch with them, so no need for you to volunteer the energy and time of our moderation team.

 

Is there any sense of what kind of policy this is about or would affect?

I am glad someone (seemingly) cares about this, but to what end?

 

I don't think anything we discussed with them was confidential. Broadly speaking they were trying to listen and learn about ME.
Before starting a formal consultation process to understand what they need to do, they will do some scoping to understand the dynamics of the subject. This will help ensure that any formal consultation is inclusive of key target audiences.

We were keen to communicate the diversity of impact of ME, and to be cautious to recognise that those with 'mild ME' may be very different to those with severe and very severe ME, who will need to be engaged in a very different way.

For what it's worth, I thought the discussion was useful and that they were engaged.