ME Assoc: How Many People in the UK have ME/CFS?

[bobbler]

Given what I've seen from individual's accounts and hear from eg people in BACME and beliefs of those who either are BPS or are being told things by BPS it has struck me that there is another useful, but probably more difficult campaign after this. Because length of time vs disability level is so important (and adjustments etc are also relevant here short term vs more disabled long term, as well as different management approaches) to these figures if we are talking funding.

But I am really glad that this is being done, more below/elsewhere at some point because it is so key now we have a proper ME/CFS definition to start cleaning all of this up.

Said campaign would be probably taking a sample and seeing what got put onto people's records regarding how long they had the condition and how ill they have been throughout that timeframe vs what ended up being forced onto their records eg where someone wrote back claiming they are 'now recovered' because they did 6weeks of a course rather than that term having anything to do with their health being better or worse.

A retrospective just for the sake of improving things going forward is needed. Particularly given I feel lots of the BPSers genuinely think still 'there are loads who don't have ME/CFS but CFS/ME who would benefit from their rehab' and the more I meet people the more doubtful I am of that other than when they are selecting chronic fatigue focused people for their past research cohorts (and lets be honest now they are perhaps filtering out those with PEM whilst still afterwards claiming results can be representative of ME/CFS).

I'm aware of politics, but there is also part of me that just can't see past the logic of if people knew that for many it could have been eg 3yrs of time off to recover but ended up being made worse by 'treatment' that made it decades and decades. And there are further shades of grey within this. I think the mismanagement and misinformation to create hostility has created a significant amount more disability over a timeframe, and it would be shocking waste of money for that to be repeated. Particularly given I don't actually think these people are their treatments are that 'cheap' either.

There is something to be written for the Post Office thread here because there was a point in time there were everyone realised the issue was having an institution who could prosecute meant they were victim, prosecutor and evidence holder and that being something that just can't work re: how the legal system works, vs there seeming to be a similar issue here regarding lack of independence or 'friction' in how whether something works long term (the most relevant measure for a long term condition) re: function actually not being 'assessed' outside of the norms/being focused on 'we did something' instead of 'worked'. It would be like someone putting cured on a cancer record because a course of treatment had been completed or someone dropped out in order to continue with funding?

Ie tackling this rumour of ‘self-limiting’ and ‘most recover’ probably leading to it getting wiped off medical history im(if it was there in the first place) simply because the BPS model coerced most people to not mention it to medical professionals and ergo claim ‘must have recovered’ ?

 

[Ash]

Ie tackling this rumour of ‘self-limiting’ and ‘most recover’ probably leading to it getting wiped off medical history im(if it was there in the first place) simply because the BPS model coerced most people to not mention it to medical professionals and ergo claim ‘must have recovered’ ?

I think you could say most do appear to recover, with the caveat that this might only be mostly or might not be permanent with increased lifetime risk of relapse compared to someone who’d never had the symptoms, if you weren’t counting when people recovered, ie most people with the symptoms who aren’t discovered to have a different condition or who don’t die within the first two or three years, but after this most people don’t recover unless a misdiagnosis is discovered and treatment given its highly unlikely to be self limiting.

But importantly ‘self limiting’ ME isn’t something that will likely happen at all if not for favourable conditions. Such as not having young children and babies to care for on your own during this crucial period or having someone else who can provide most of their physical care needs. Or having a doctor sign you off work sick for long periods. Having enough money to feel secure and comfortable while you rest it out. Having a supportive partner family friends colleagues and community. Having a supportive doctor who helps you monitor your health. So its doesn’t ‘self limit’ without support and after a while it doesn’t self limit at all for all but a minority of people. Even with optimal conditions there are no guarantees that recovery will occur.

Most people who do recover discover other conditions that they can treat, which unfortunately too often is treated as ‘recovery from ME’ when it’s recovery from ME symptoms that actually turned out to be something else. Or not actually full recovery. Say recovery from a certain level of severity of ME for any number of reasons but not full recovery or it’s pretending to recover because everyone is so mean to you if you don’t.

@bobbler I hope you’re right and I think that you may be that if people knew how grim the outcomes are for so so many they would be more interested in research. Hopefully trying to have a better guesstimate for the numbers of people with ME in the population will start us on that path.

Edit: For final paragraph above not the point @bobbler made. See above and below replies from them.

 

[Sean]

But importantly ‘self limiting’ ME isn’t something that will likely happen at all if not for favourable conditions.

+1

 

[bobbler]

I think you could say most do appear to recover, with the caveat that this might only be mostly or might not be permanent with increased lifetime risk of relapse compared to someone who’d never had the symptoms, if you weren’t counting when people recovered, ie most people with the symptoms who aren’t discovered to have a different condition or who don’t die within the first two or three years, but after this most people don’t recover unless a misdiagnosis is discovered and treatment given its highly unlikely to be self limiting.

But importantly ‘self limiting’ ME isn’t something that will likely happen at all if not for favourable conditions. Such as not having young children and babies to care for on your own during this crucial period or having someone else who can provide most of their physical care needs. Or having a doctor sign you off work sick for long periods. Having enough money to feel secure and comfortable while you rest it out. Having a supportive partner family friends colleagues and community. Having a supportive doctor who helps you monitor your health. So its doesn’t ‘self limit’ without support and after a while it doesn’t self limit at all for all but a minority of people. Even with optimal conditions there are no guarantees that recovery will occur.

Most people who do recover discover other conditions that they can treat, which unfortunately too often is treated as ‘recovery from ME’ when it’s recovery from ME symptoms that actually turned out to be something else. Or not actually full recovery. Say recovery from a certain level of severity of ME for any number of reasons but not full recovery or it’s pretending to recover because everyone is so mean to you if you don’t.

@bobbler I hope you’re right and I think that you may be that if people knew how grim the outcomes are for so so many they would be more interested in research. Hopefully trying to have a better guesstimate for the numbers of people with ME in the population will start us on that path.

I can’t remember where I suggested people would invest more in research if they knew how grim outcomes are but will re read.

what I do imagine is that if GPs are being told CFS last three years max and we all gave up seeing it mentioning our condition to GP - because of how we are treated - they’ve got their self fulfilling prophecy of seeing it as something that poof just disappears according to records and evidence whilst we all sit and are sure our GP knows full well we have it fir twenty plus years etc

yes those in early days after virus have different recovery rates so maybe if people are being diagnosed earlier that will be relevant to note too. Back whilst the old guidelines operated people were ill for years before they went to GP and even then they would take word for it snd only started any referral if you went back six months later after they kept sending you away. So those who were diagnosed often had it years by then.

what do we do if they take people who’ve had it forty years then try and claim they can add it on but make it look like it’s ‘new’ ? I think the way it operates and old guidelines were written GPs and readers of any data there even was wee led to believe it goes away and just comes back as the odd ‘relapse’ vs what it actually is … and that’s an issue


Particularly given it operates more like certain other lifelong illnesses once you have it gif a long enough time?

 

[Ash]

I can’t remember where I suggested people would invest more in research if they knew how grim outcomes are but will re read.

what I do imagine is that if GPs are being told CFS last three years max and we all gave up seeing it mentioning our condition to GP - because of how we are treated - they’ve got their self fulfilling prophecy of seeing it as something that poof just disappears according to records and evidence whilst we all sit and are sure our GP knows full well we have it fir twenty plus years etc

yes those in early days after virus have different recovery rates so maybe if people are being diagnosed earlier that will be relevant to note too. Back whilst the old guidelines operated people were ill for years before they went to GP and even then they would take word for it snd only started any referral if you went back six months later after they kept sending you away. So those who were diagnosed often had it years by then.

what do we do if they take people who’ve had it dirty years then try and claim they can add it on but make it look like it’s ‘new’ ? I think the way it operates and old guidelines were written GPs and readers of any data there even was wee led to believe it goes away and just comes back as the odd ‘relapse’ vs what it actually is … and that’s an issue


Particularly given it operates more like certain other lifelong illnesses once you have it gif a long enough time?

Ahh, apologies I misread your comment.

Yes absolutely you’re quite correct GPs are viewing it as something that if not entirely goes away on its own more or less shuffles off for a while maybe coming back for a while. This influences how debilitating they perceive it to be.

Also yeah you could be reporting ME symptoms for years and decades, and they could be if you’re lucky recording some of these on your records but still none of that will count in their statistics until you get the diagnosis of ME if you eventually do get one.

But I’ve rarely if ever at all met a doctor who believed PEM, was an existing phenomena that could actually make you physically sicker and sicker if you try to push through it, or that it is any different from normal fatigue brought on by trying to re-condition yourself after an accident or period of acute illness that’s behind you now. So they’re not likely to take any reports of PEM seriously and record them as such. So without counting the one feature of ME that is most helpful in distinguishing it from other conditions, it’s less likely to be diagnosed I’d guess.

 

[Ravn]

A new and comprehensive UK epidemiology study is clearly needed. This sort of research is very expensive to carry out, but we would welcome grant applications to the Ramsay Research Fund and could consider funding a suitable study in combination with another charity or with the Medical Research Council (MRC) or National Institutes of Health Research (NIHR).

Has anyone tried tagging an ME prevalence study onto one of those large longitudinal population study cohorts they have in some countries? A proper study, not just counting unreliable official diagnoses but properly assessing people for ME, maybe screening via questionnaire first and then interviewing or medically assessing suspected cases in more detail

You'd be stuck with whatever recruitment and other biases are inherent in the existing cohort but it might still be the most economical way of getting reasonably reliable data

 

[bobbler]

Ahh, apologies I misread your comment.

Yes absolutely you’re quite correct GPs are viewing it as something that if not entirely goes away on its own more or less shuffles off for a while maybe coming back for a while. This influences how debilitating they perceive it to be.

Also yeah you could be reporting ME symptoms for years and decades, and they could be if you’re lucky recording some of these on your records but still none of that will count in their statistics until you get the diagnosis of ME if you eventually do get one.

But I’ve rarely if ever at all met a doctor who believed PEM, was an existing phenomena that could actually make you physically sicker and sicker if you try to push through it, or that it is any different from normal fatigue brought on by trying to re-condition yourself after an accident or period of acute illness that’s behind you now. So they’re not likely to take any reports of PEM seriously and record them as such. So without counting the one feature of ME that is most helpful in distinguishing it from other conditions, it’s less likely to be diagnosed I’d guess.

No worries I more than likely was implicitly thinking that.. just the opposite way around ie that it certainly doesn't help any funding etc for the illness and prognosis to get inadvertently hidden or disguised due to how the system had been set up for so many years. Ahh I think what I was getting at is that where for example either direct exacerbation by old treatments like GET or 'indirect' by lack of adjustments potentially just weren't being recorded for all of those years.

ANd of course that would have been important if the system worked for the eg GP to act as an independent 'check' because they would see the longer term in the absence of any clinics being set up to take responsibility for the longer term (which people claim isn't needed, just short courses, I assume based on the 'cure' stuff from the PACE trial).

But for the specific question of the thread of prevalence, if people are doing some sort of calculation approx then it will involve a complex function/calculation of age of onset x likelihood of whether you get more, same, less disabled over the next years being part of it. If people were being recorded as getting it at 34 and assumed it went away after 3yrs then that isn't the same as potentially seeing that is x number of people and by the time someone was diagnosed at 34 they'd had it for 8yrs at x level. I just don't believe that the figures that would need to be being 'plugged in' to a prevalence model have been collected accurately (as well as coding issues and all the rest).

SO it seems as if there might need to be a two-way thing where if we have a smaller sample eg from DecodeME that can indicate what %s might be on these factors we've a chance of seeing how big the issue has been on the actually diagnosing, coding, keeping people logged data that might be kept for other conditions by the specialist clinics for that condition and ergo GPs.

PS I think you hit the nail on the head with what you've written on where things might be re: average perceptions of GPs etc.

 

[Ebb Tide]

I know it would be only be self-report evidence, but the most recent census in Scotland asked if you had a disability, and then ME was one of the options on the following drop down list.

 

[bobbler]

But I’ve rarely if ever at all met a doctor who believed PEM, was an existing phenomena that could actually make you physically sicker and sicker if you try to push through it, or that it is any different from normal fatigue brought on by trying to re-condition yourself after an accident or period of acute illness that’s behind you now. So they’re not likely to take any reports of PEM seriously and record them as such. So without counting the one feature of ME that is most helpful in distinguishing it from other conditions, it’s less likely to be diagnosed I’d guess.

This is a really interesting 'nub' of it.

I've had variations of it, but such is the communication style of the professions that I've learned over time you can't trust what you've been led to think, but also whilst they might 'get' something they think is PEM... and of course even I really also meant PEM, PENE and PESE ie any of the timing-based things.

So it perhaps shows how much work there is to do, and we all really need to nail that one down better. And as you say the more fundamental bit of it being the real 'nub' which is that it isn't that the illness is just that like it is an allergic reaction but that we have energy-limits and if we don't have pretty prompt support to reduce our exertion then we get worse and worse.

My main point of mentioning it on this thread is about prevalence and getting the right people under the right diagnostic category. I also think lots of people who read 'tired all the time' old myths, even have pictures in their head of what people with ME or CFS 'look like' which is very different to eg what the CDC description describes and the PEM/PENE/PESE concept shows and might think that isn't what they have if they actually get good energy then massive symptoms and crashes - and that pattern becomes self-perpetuating. People who think 'I can still do a Park Run every so often so it's not that!, my issue is with aching when I'm in the office MOn-Wed and suddenly having terrible sleep patterns, I seem to get terrible flu every 6weeks'.

And what we think we know on prevalence and gender and age could be completely different if, theoretically, there was some sort of fresh start and census-type diagnostics. Which could certainly maybe help research if it gives a basis for clues and what a representative sample is/common comorbidities etc.

And it would be interesting to map the 'likely alternative diagnoses' to see for example with pain what the different patterns are from Fibro and with cognitive fatigue what the difference is vs FND.. or any other condition, I suspect the sleep thing where people get strange timings or other stuff that is quite dramatic (I think it is part of the PEM thing) might have clues too. Lots of people might have both. Some might have something completely different that has treatment. In that sense I'd describe PEM test as needing people to be able to have at least a week where they are in control of their exertion to test timings vs symptoms etc. But what are those timings?



But yes, I could go on all day about the different patterns I've seen in medical professionals but it isn't all always bad (sometimes starts good if you get in first and then 'culture' influences too) and so the size of that task and what would be being battled against there!


I think we need to begin putting better terms out there to allow for it to be used in diagnosis (the easier and clearer we make it etc...), and for those who are in early stages wondering what they have to understand the difference between different conditions too. Maybe it could begin with us too though. Even pwme never fully know whether when using 'PEM' as a term, we are referring to the limitation of living within that envelope (or not being able to, I know most around me just ignore that), think of it as a crash where they don't see you for a few days, a general concept, or this important scientific thing.

 

[Ravn]

Has anyone tried tagging an ME prevalence study onto one of those large longitudinal population study cohorts they have in some countries?

Speaking of which, this preprint from Canada just came out.

Discussed in its own thread but briefly, they looked at self-reported CFS diagnoses (made by a doctor) in a large population study cohort. They asked a random sample of these "probable CFS cases" to fill in additional, more specific questionnaires to check how many met CCC or IOM criteria. Only about a third did. They calculated that the likely prevalence of CCC/IOM ME was about 0.4%. I didn't read the details but there seemed to be some selection bias going on. Also they relied on questionnaires rather than clinical evaluation and I don't think they looked for missed diagnoses. So some missed opportunities for more accurate data but more of this sort of "add-on studies" would be helpful

 

[DigitalDrifter]

I think prevalence was probably pretty stable for a long time, but surely now with many people meeting ME/CFS criteria following Covid infection, the prevalence may have at least doubled.

- Bateman says Long Covid can cause immediate PEM, breathlessness etc. I think this is diluting the definition of ME, or at least PEM-ME as opposed to classical Ramsay-ME which did have immediate effects from exercise.

They calculated that the likely prevalence of CCC/IOM ME was about 0.4%.

Pre-covid the CCC yielded a prevalence of 0.1% https://journals.sagepub.com/doi/full/10.1177/1359105317695803 which is now higher due to Covid, 0.4% I can may be accept but the ME Association claimed 1.8%. I think such an inflation harms credibility which is already a serious issue.

 

[Haveyoutriedyoga]

Are there any research or advocacy efforts currently going on that aim to update prevalence estimations in the UK?

ICSs are gradually creating systems that mean ICBs can access GP databases, which include clinical codes, which would capture more people than hospital episode statistics do - ie people who haven't been to hospital since the date mentioned in the article (2004? I forget) or who had their diagnosis since their last hospital episode.

It doesn't overcome the poor coding in primary care, and the over and under diagnosis, but it's a new opportunity and the right questions could be asked via FOI to those ICBs who have a new data sharing system in place.

It could also expose the grouping of MECFS with fatigue and mental health which might be useful for advocacy efforts.