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

[Simon M]

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

The MEA is trying to come up with an updated prevalence figure for the UK and is looking for input from PwME. Their website article is above, their Facebook page seems to be the place for comments, though some people might find a forum thread an easier place to have a disccusion - it is for me.

I was asked to write a briefing piece for the MEA, which fed into Charles' good article on the website.

 

[Simon M]

The estimate of 390,000 from the recent preprint (submitted for publication) by Gemma Samms and Chris Ponting probably gives us the best estimate, IMO. It analysed data for all 100k people with a g93.3 Post viral fatigue sydrome ICD-10 diagnostic code.

Most of the data will have come from outpatient appointments since 2004-5. However, any patients diagnosed before then making making outpatient visits after then will still have the diagnostic code added to their record. these are Hospital Episode Statistics

The based their estimate of 0.6% on the highest rate seen for white people in any ICB (see rationale below)

People recorded as having white ethnicity had a 5x higher rate of diagnosis than those recorded as non-white, though other evidence suggests the true prevalence is similar across ethinicity. Similarly,, diagnosis rates varies about tenfold between Integrated Care Boards (ICBs), which commission services. Again, we don't have any evidence that true prevlance varies across the country. So they used the diagnostic rate for n Cornwall (& Scilly Isles) ICB as the true rate. This makes sense as Cornwall has been good at diagnosis for many years.

Naturally, this excludes any cases that haven't been referred to clinics since 2004. However, several lines of evidence suggests that diagnosis might be leaky (with 90%+ diagnosis rates for referrals); the sex ratio of 3.9 is consistent with maybe 25% of diagnoses having Chronic Fatigue or other illnesses being included, though this is my speculation. How these two factors counterbalance each other is anyone's guess.

 

[ME/CFS Skeptic]

It analysed data for all 100k people with a g93.3 Post viral fatigue sydrome ICD-10 diagnostic code.

Is there any indication that doctors use this code for ME/CFS in the UK? I remember a study of ICD-10 data in the US where it was mostly used for older people.

I would say that somewhere between 0.2% (Nacul et al. 2011) and 0.4% (Jason et al.1999) is still a good conservative guess.

I understand the frustration with the estimates being old but if there haven't been any new epidemiological studies then I so no reason to try to change the prevalence estimates used.

 

[Trish]

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.

 

[Spartacus]

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

The MEA is trying to come up with an updated prevalence figure for the UK and is looking for input from PwME. Their website article is above, their Facebook page seems to be the place for comments, though some people might find a forum thread an easier place to have a disccusion - it is for me.

I was asked to write a briefing piece for the MEA, which fed into Charles' good article on the website.

Back when I was diagnosed in 2000, the figure quoted for UK ME sufferers, was 250,000. That figure dated from about 1994. Since my own diagnosis, I have come across 10 people who have also been diagnosed since 1994. This was without actually looking for people with ME. These people are former colleagues, neighbours, friends, and friends of family and friends. All of these people are too severe to work. None of them have recovered. Eight of them were in well paid jobs. The other two were young mothers.

Since my diagnosis, I have come across far more youngish people with ME than any other disease. Even cancer.

Give that most people do not recover or die, the prevalence must by now be far far higher than the 250,00 that the media keep quoting.
It is mind boggling that the government and the health service do not perceive this as a national emergency.

 

[Trish]

I don't think the logic of an ever increasing number makes sense. For every disease that doesn't have unusual factors leading to increased or decreased incidence, there should be a steady state of prevalence where new cases are balanced out by older cases dying, whether of the disease or other causes, so the overall proportion in the population stays the same.

 

[NelliePledge]

It’s interesting that as many as 100k people actually have Icd 93.3 diagnosis given the reluctance to use it and the MUS crowd teaching Drs to treat symptoms instead

 

[bobbler]

I don't think the logic of an ever increasing number makes sense. For every disease that doesn't have unusual factors leading to increased or decreased incidence, there should be a steady state of prevalence where new cases are balanced out by older cases dying, whether of the disease or other causes, so the overall proportion in the population stays the same.

I don’t understand
That depends on the death rate vs rate of getting it? And if more each year stay alive with it than die plus there are new cases and there isn’t a high recovery rate/it’s short lived for those then surely the logic is that it would be upward,

how could all diseases be the same - I’m not aware of a reason these things would be constant across all sl diseases?

but also age of getting it - if whatever % are ill for sixty years with it then it would be an equation that likely tends towards natural growth?

So the burden nightmare is something that people get young, leaves them very disabled long term but they don’t die early and has high prevalence.

we just can’t rely on the facts re: each of these factors to be precise but there is potential it’s grown ?

 

[NelliePledge]

PWME have a bigger challenge accessing health care generally, so many being bed and housebound. Also symptoms due to cancer, heart and vascular can be misattributed to ME and not addressed as soon as a healthy person might. I believe that there was some research by Jason about mortality. Also is there not evidence that PWME have more cases where people take their own lives.

 

[Nightsong]

G93.3 may be the ICD-10 code that currently best reflects ME/CFS but what we do not really know is if that is how it is being used by NHS hospitals in practice. In particular, I'd like to see how coding rates for idiopathic fatigue and the old neurasthenia code (R53 and F48.0, if memory serves) vary as well; is it not possible that the variance in G93.3 rates between ICBs documented in the preprint mentioned above may be attributable to differences in coding practices as well as regional differences in diagnostic availability and practice?

There is also the newer ICD-10 code for long COVID, U09.9. Given that a very high percentage of the UK population will have been infected by COVID-19 at least once and the apparent preference of some clinics to give long COVID diagnoses over ME/CFS ones, it would also be interesting to see how the pandemic in general and the introduction of this code has affected G93.3 diagnoses. If I recall correctly SNOMED, used in GP practices, now has separate codes for different severities of ME/CFS, so that data would be interesting to see analysed. We also have no idea as to how many NHS CFS diagnoses would meet modern diagnostic criteria with PEM as a mandatory criterion.

Before any decision is made on changing the 250,000 figure we would like to hear from the patient community

While better epidemiological studies are very badly needed, I do not understand why the MEA is thinking of changing the established prevalence figures until & unless we have more reliable data.

 

[Trish]

I don’t understand
That depends on the death rate vs rate of getting it? And if more each year stay alive with it than die plus there are new cases and there isn’t a high recovery rate/it’s short lived for those then surely the logic is that it would be upward,

how could all diseases be the same - I’m not aware of a reason these things would be constant across all sl diseases?

but also age of getting it - if whatever % are ill for sixty years with it then it would be an equation that likely tends towards natural growth?

So the burden nightmare is something that people get young, leaves them very disabled long term but they don’t die early and has high prevalence.

we just can’t rely on the facts re: each of these factors to be precise but there is potential it’s grown ?

To take a very oversimplified example, say in a town of 10,000 people, one person per year gets ME/CFS, average age 25, none recover and they die at average age 75. So on average there are 50 pwME in the town. Each year there's a new pwME aged 25, and a pwME dies aged 75. If incidence and survival rates stay the same then prevalence in the town is a steady state 5O people.

Along comes Covid, and suddenly there are an extra 10 pwME each year for several years. That massive increase in incidence, leads to a massive increase in prevalence, with the 50 climbing by 10 per year for every year Covid keeps triggering ME/CFS, and if those pwME also live on average 50 years, prevalence numbers will keep increasing for many years.

On the other hand, if a cure is found, the incidence of new cases each year may stay the same, but the prevalence will drop dramatically.

 

[bobbler]

To take a very oversimplified example, say in a town of 10,000 people, one person per year gets ME/CFS, average age 25, none recover and they die at average age 75. So on average there are 50 pwME in the town. Each year there's a new pwME aged 25, and a pwME dies aged 75. If incidence and survival rates stay the same then prevalence in the town is a steady state 5O people.

Along comes Covid, and suddenly there are an extra 10 pwME each year for several years. That massive increase in incidence, leads to a massive increase in prevalence, with the 50 climbing by 10 per year for every year Covid keeps triggering ME/CFS, and if those pwME also live on average 50 years, prevalence numbers will keep increasing for many years.

Sorry I should have made it more clear.

What I didn't understand is how you can know that the rate isn't going up, just as you don't know it isn't going down? - given even an actuary can't have figures/rates that noone is collecting (and for all we know eg with LC it could be that with correct advice that lifts after 5yrs, or is lifelong or has relapses until we get to each of those markers?, we've actually a better chance of guestimate data from ME/CFS)

Although sure as heck I bet there are actuaries working out the thresholds for age of onset vs how long it last for with the incorrect management advice (or should) regarding 'burden' for all sorts of things as models they don't have these figures to plug into it? and neither do we.

 

[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).

Yes, I think the only way out of this muddle of confusion is a really good, big and solid epidemiologic study, one that's not based on recorded diagnoses which are a mess and could vastly over- or underestimate the real prevalence, we don't even know in which direction to err. Ideally a study that takes a representative community sample and looks for properly diagnosed as well as misdiagnosed as well as undiagnosed people aaaaand also at ME-like Long Covid while they're at it

Pipe dream? Probably. But we bloody well deserve it! After all this time of being ignored, surely we can at least ask to be an accurate statistic

How much would such a study cost? Could some Long Covid organisation contribute, too?

 

[Simon M]

Is there any indication that doctors use this code for ME/CFS in the UK? I remember a study of ICD-10 data in the US where it was mostly used for older people.

There is:
1. The sex ratio of 3.9 is very high, though not as high as research samples. It's hard to think what else the code is being used for that would have such a high ratio. Depression (1.5-2) and Chronic Fatigue (arond 2) have much lower sex ratios. The US study is clearly bunk: very low sex ratio and high incidence amongst older patients.
2. The age profile is credible (see Fig2A prevalence).
3. Other work I have done shows the annual cases seen by ME/CFS clinics is broadly consistent with G93.3 numbers (Collin 2012, BACME 2023 report vs HES data I can't share).

I would say that somewhere between 0.2% (Nacul et al. 2011) and 0.4% (Jason et al.1999) is still a good conservative guess.

I understand the frustration with the estimates being old but if there haven't been any new epidemiological studies then I so no reason to try to change the prevalence estimates used.

I agre in principle. The Nacul study isn't ideal as it didn't use specialist diagnosis (review of medical records + symptom questionnaire). The Jason study is more reliable in my view, but neither are perfect

However, how do we explain the very high diagnosis rate for Cornwall? See above for why the g93.3 figures are broadly credible. The HES data for the Samms study will be made available when the study is published, but the preprint figures show say it's based on more than 2,000 diagnoses. Compared with, I think, 32 for Jason.

I agree it's a big jump in prevalence from previous estimates, but I can't fault the logic. I think we need an explanation for how the Hospital episode statistics are wrong before ignoring findings from so much data.

 

[Spartacus]

I don't think the logic of an ever increasing number makes sense. For every disease that doesn't have unusual factors leading to increased or decreased incidence, there should be a steady state of prevalence where new cases are balanced out by older cases dying, whether of the disease or other causes, so the overall proportion in the population stays the same.

I see your point. However, I suspect ME is not one of those illnesses where there is going to be a steady state of prevalence.

In my case, ME appears to have been triggered by a hepatitis vaccination. As a society we are having far more vaccinations now than even when I was diagnosed 20 odd years ago. I would think that would be significantly increasing the prevalence of ME. Unfortunately the medical profession is reluctant to allow discussion of the health consequences of repeat vaccinations.

Also, our population in the UK has increased massively since 1994, so one would expect the actual number of people with this condition to be far higher by now, though obviously if you are correct the prevalence rate would remain the same.

Annecdotally, my father in his 80's said he didn't know anybody of his generation who had to quit work due to ME or an unnamed mystery illness. Admittedly many women of his generation did not work outside the home, and as we know ME disproportionately effects women. However, I know of 4 men who have had to give up working due to ME. It is just my personal experience, but it does suggest a pretty high prevalence.

 

[Trish]

Annecdotally, my father in his 80's said he didn't know anybody of his generation who had to quit work due to ME or an unnamed mystery illness. Admittedly many women of his generation did not work outside the home, and as we know ME disproportionately effects women.

My father had a post infectious illness in the 1930s. One difference then was that doctors put him on extended sick leave and told him not to do any physical or mental work until he recovered. He had recurrences of what the GP diagnosed as a recurring virus in the 1950's and 60's and again the treatment was complete rest until recovery each time. During those decades I knew people who missed a year of school because of glandular fever.
Similarly when I had glandular fever in the 1970's and took 6 months to recover, there was no pressure to start exercising until I fully recovered. Lots of women, particularly, in the past who had husbands or families to support them were 'frail' or 'invalids' with unknown cause and it was accepted that they needed to rest.

I think the big uptick in diagnosis since the 1980's may be because more women are expected to go out to work, extended sick leave is much harder to get, and medical attitudes have changed so we are expected to go to clinics and be rehabilitated, which makes us sicker. The cult of exercise and work being healthy for everyone has done a lot of harm.

 

[Ash]

I see your point. However, I suspect ME is not one of those illnesses where there is going to be a steady state of prevalence.

In my case, ME appears to have been triggered by a hepatitis vaccination. As a society we are having far more vaccinations now than even when I was diagnosed 20 odd years ago. I would think that would be significantly increasing the prevalence of ME. Unfortunately the medical profession is reluctant to allow discussion of the health consequences of repeat vaccinations.

Also, our population in the UK has increased massively since 1994, so one would expect the actual number of people with this condition to be far higher by now, though obviously if you are correct the prevalence rate would remain the same.

Annecdotally, my father in his 80's said he didn't know anybody of his generation who had to quit work due to ME or an unnamed mystery illness. Admittedly many women of his generation did not work outside the home, and as we know ME disproportionately affects women. However, I know of 4 men who have had to give up working due to ME. It is just my personal experience, but it does suggest a pretty high prevalence.

Yes. In one or several better off previous generation’s public health improved. Due to social security and public health programs and secure living and housing situations, never for everyone, but health sustainment was available to a larger section of the population than is the case now.

People travelled less and relocated less often, so may not have been exposed to as many different infections spaced as close together as now giving them a chance to recover better between bouts and outbreaks of infections. Even before COVID-19, increased infection and secondary infections I think were occurring with the return of old diseases at higher rates once again.

If talking about the UK, for certain generations, you could expect to grow up in a town go explore other places if you had the opportunity to study or work elsewhere and inclination to do so or stay put if you didn’t. Then bring up your own family in a in your home community in relatively decent housing on a normal person’s salary that was more likely than now to be enough to live on. Or you could grow up in a large city following the same pattern except that you live in a smaller community connected to lots of other smaller communities. No matter the generation not everyone could do this, not everyone was granted a place in the security of the community. But it was a very common way to live for people.


Now you have to move all the time, whether you want to or not, it’s insecurity not choice, you never know how long your income will keep coming in or be enough or you’ll have to relocate for work or how many jobs you’ll have to piece together to make ends meet, you have to move because rent is too high, or you’re sick and or caring for small children and you can’t work enough hours and you can’t move because no landlords will have you and your housing is full of black mould and you can’t sleep for worrying what it’s gonna do to your own or your kids lungs and hearts, and the pollution is high too so outside isn’t safe either and you can’t think straight. You can’t even feed your children. People are getting sicker than they used to in the short period of welfare state programs and standards for housing, getting sicker younger, more sick children, more sick parents, everyone is sick all the time, with the stress is high the food is more difficult to come by the fuel prices are so high everyone is cold.


The the life expectancy is falling thanks to all this disease but also people are killing themselves at higher rates. But I still don’t think those deaths are enough to keep rising prevalence rates of ME or any other sickness down, I think people are falling to sickness quicker than they’re dying.

But for people with ME which is usually triggered by infection as far as we know in susceptible people, you’ve got a ton of infection and chances to get infected little to no chance not to get infected, at work at school on the bus in shops at the doctors surgery the hospital no protections at all. Then you have no chance to rest and recover, because you’re gonna starve or freeze or be made homeless if you can’t keep working, no sick pay no employment rights for most people anymore, you can’t keep your kids off school because then you can’t work, so they don’t get even days to recover, sent home only if temperature spikes are noticed or they vomit or collapse or maybe a certain rash. Otherwise you can attempt to to access financial support from the state but you have to be mentally strong enough to be told that you don’t deserve to have children or eat or have heat or housing if you can’t afford them off your own g hard work and you may have to somehow stay alive for a few months with no money at all while you wait or if you get rejected for support. This country has always been a dystopian hell scape for some living here. Now it’s a much greater sum of the people.
There is a loss of hope now too as it becomes harder and harder to avoid harsh conditions.


Vaccinations can make people sick and having to stimulate your immune systems with theses so regularly as we may have to now, if we are even more vulnerable to COVID-19 damage or deaths than everyone else, increases that risk. However in terms of numbers vaccines are far far below infections as a trigger for ME.

Having so many infections landed on people who are made sick already by their horrible living conditions or the constant stress of trying to avoid falling into such deprivation, is just certain to increase the risk of post infection complications, for some people that’s gonna be ME and there aren’t many doctors who could or would be able get them into the kind of old school convalescence that might have once given them at least a shot at recovery. It’s just not possible for most people.

 

[Peter T]

Similarly when I had glandular fever in the 1970's and took 6 months to recover, there was no pressure to start exercising until I fully recovered. Lots of women, particularly, in the past who had husbands or families to support them were 'frail' or 'invalids' with unknown cause and it was accepted that they needed to rest.

My sister in law, knowing me and a couple of friends with children with ME, insisted both her children took a year out from university following glandular fever. One spent part of the year studying French in Paris. Neither had any long term issues.

 

[Simon M]

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.

yes. The question is, how much has it increased? And there is no good data on long Covid prevalence.

Part of the problem is the incredibly broad definition: symptoms persisting or developing 12 weeks after a Covid infection with no alternative explanation . There is no severity threshold, no required symptoms (no Case definition) and no diagnosis required (A lot of ME diagnosis is excluding alternative diagnoses). Imagine if ME was diagnosed on using the same criteria, but to include “12 weeks after any infection” the prevalence rate would probably be a lot higher.

Also,there is no control group in any study – how many people might have developed these symptoms without having had Covid? (a recent study with a control group that produces a different picture TO be added).

The Best information we have is from the ONS. That estimates self reported long Covid at 2 million cases. A large majority of these say the symptoms limit their daily activity either a little or not at all.

380,000 people say the symptoms limit activity a lot. A couple of studies mentioned in Charles Shepherd’s article (one a clinic, one using a self selected sample) around 50% of cases met ME criteria. It’s likely that the people at the clinic and in the sample all limited a lot by the illness.

So, that would give us 190,000 cases of long Covid cases with ME.

I suspect that is a generous estimate and the cases may have of the causes , But I think it’s the best we can do for now.

 

[bobbler]

Sorry I should have made it more clear.

What I didn't understand is how you can know that the rate isn't going up, just as you don't know it isn't going down? - given even an actuary can't have figures/rates that noone is collecting (and for all we know eg with LC it could be that with correct advice that lifts after 5yrs, or is lifelong or has relapses until we get to each of those markers?, we've actually a better chance of guestimate data from ME/CFS)

Although sure as heck I bet there are actuaries working out the thresholds for age of onset vs how long it last for with the incorrect management advice (or should) regarding 'burden' for all sorts of things as models they don't have these figures to plug into it? and neither do we.

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?