Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

[hotblack]

The important thing is to find out what is going on and treat it.

But to do so we need to convince people, most likely politicians and policy makers, to fund the actually important scientific work. And that’s where this stuff can be useful I think, they respond to it.

That said, I don’t like too much focus on diagnosis rates and certainly not on trying to push them up (as some groups seem to do) seems unhelpful. I get why, because of the persuasion point, but if your numbers are unrealistic your argument fails.

 

[SNT Gatchaman]

The Times: ME sufferers ‘feel invisible and ignored’ amid lottery of NHS care (share token)

Researchers at the University of Edinburgh analysed NHS records from 62 million people to come up with the best estimate yet of the prevalence of ME, also known as chronic fatigue syndrome (CFS).

They concluded that 404,000 people are living with the illness, a figure that is two thirds higher than previously thought, and many are being “completely overlooked”.

Professor Chris Ponting, from the University of Edinburgh’s Institute of Genetics and Cancer, the study author, said: “The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, depending on where you live and your ethnicity. The data backs up what many people with ME/CFS say: that they feel invisible and ignored.”

He called for the findings to be a “wake-up call” to the government to commit to providing more funding for ME research and treatment, noting that ME currently costs the UK economy billions of pounds.

“There is a sound economic argument for spending more money on research. If just a fraction of people who are unwell with ME were able to go back to work by dint of that research, that would be a good financial outcome.”

Gemma Samms, a PhD student at Edinburgh funded by ME Research, a study author, said: “People struggle to get diagnosed with ME/CFS. Diagnosis is important, because it validates their symptoms and enables them to receive recognition and support. Our results should now lead to improved training of medical professionals and further research into accurate diagnostic tests.”

 

[Simon M]

But to do so we need to convince people, most likely politicians and policy makers, to fund the actually important scientific work. And that’s where this stuff can be useful I think, they respond to it.

That said, I don’t like too much focus on diagnosis rates and certainly not on trying to push them up (as some groups seem to do) seems unhelpful. I get why, because of the persuasion point, but if your numbers are unrealistic your argument fails.

Yes, that frustrates me too, especially when it comes to LC-ME estimates, which don't square with the data.

But this higher estimate of 0.6% (previous best estimate was probably Jason, 1999, 0.42%), largely using pre-LC data, looks good.

 

[hotblack]

Age would be an interesting thing to compare the data with. Shouldn’t be too difficult for someone with access to the data and some R knowledge…

Not the really accurate correlation you could do with proper data analysis but if people want a visual look, here’s ONS data from the last Census by region for over 65s
https://www.ons.gov.uk/census/maps/choropleth/population/age/resident-age-3a/aged-65-years-and-over
And median age
https://www.ons.gov.uk/census/maps/choropleth/population/median-age/median-age/median-age/

 

[hotblack]

But this higher estimate of 0.6% (previous best estimate was probably Jason, 1999, 0.42%), largely using pre-LC data, looks good.

I honestly have no idea what it may be. All of this paper looks reasonable and like the best stab we have given the limitations in diagnosis/coding though. Certainly not unreasonable or trying to inflate things as some others have.

I’m interested in why you think Cornwall would be best estimate of rates of prevalence though? Coincidence or are there factors which you think would cause this?

 

[hinterland]

Merged thread

The Guardian: Over 150,000 more people in England have ME than previously thought, study finds

More than 150,000 more people in England are living with chronic fatigue syndrome (CFS) than was previously estimated, according to a study that highlights the “postcode lottery” of diagnosis.

The research, published in the peer-reviewed journal BMC Public Health, involved researchers from the University of Edinburgh analysing NHS data from more than 62 million people in England to identify people who had been diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome or post-viral fatigue syndrome.

The data was examined by gender, age and ethnicity, and grouped by different areas of England.

LINK

This seems fine except for the journalist or sub-editor reclassifying ME/CFS as “chronic fatigue”… a symptom, not a diagnosis. I do wish they’d stop doing that.

 

[Jonathan Edwards]

It says:
The findings showed that the lifetime prevalence of chronic fatigue for women and men in England may be as high as 0.92% of the population for women, and 0.25% for men. This is equivalent to about 404,000 people overall.

What is a "lifetime prevalence". Is there such a thing and was that what was reported.
If the number refers to how many people get ME/CFS at some time in their life then 0.9% is probably what one would expect from the old 0.2-0.4% prevalence figure?

 

[hinterland]

From the BMC Public Health paper:
“If all 68.3 million UK citizens [38] were to have a lifetime prevalence matching the point prevalence of NHS Cornwall and Isles of Scilly then 83,626 males (i.e., 0.25% of 33.450m) and 320,296 females (i.e., 0.92% of 34.815m) would be given a G93.3 ME/CFS diagnosis in their lifetime.”

It says:
The findings showed that the lifetime prevalence of chronic fatigue for women and men in England may be as high as 0.92% of the population for women, and 0.25% for men. This is equivalent to about 404,000 people overall.

What is a "lifetime prevalence". Is there such a thing and was that what was reported.
If the number refers to how many people get ME/CFS at some time in their life then 0.9% is probably what one would expect from the old 0.2-0.4% prevalence figure?

 

[InitialConditions]

The Guardian: Over 150,000 more people in England have ME than previously thought, study finds

There seems to be some confusion about whether the 404,000 figure is for the UK or just England. I believe it's for the UK, so this article would need correcting.

 

[Kitty]

But to do so we need to convince people, most likely politicians and policy makers, to fund the actually important scientific work.

The funding should start to come once we have something to research.

Problem is that we don't yet, and even if there was a big research fund ringfenced for credible applications, there's only really the genetic sequencing project to go at. Even that probably didn't ought to go ahead before DecodeME reports.

 

[hotblack]

The funding should start to come once we have something to research.

That’s very true. I don’t see harm in a bit of persuasion too though. We need a good story to tell as well as having something to research. There’s a lot of diseases, a lot of people vying for funding…

 

[Jonathan Edwards]

From the BMC Public Health paper:
“If all 68.3 million UK citizens [38] were to have a lifetime prevalence matching the point prevalence of NHS Cornwall and Isles of Scilly then 83,626 males (i.e., 0.25% of 33.450m) and 320,296 females (i.e., 0.92% of 34.815m) would be given a G93.3 ME/CFS diagnosis in their lifetime.”

So maybe lifetime prevalence is whether you ever get it in your life, which I would expect to be about two to three times higher than the point prevalence, although that is just a guess. We have been working with point prevalence of 0.2-0.4%. The would seem to fit a lifetime prevalence of 0.4-1.2% - with 0.9% roughly in the middle.

 

[Dolphin]

https://www.eurekalert.org/news-releases/1081268

News Release 22-Apr-2025
ME/CFS cases in England much higher than first projected
Peer-Reviewed Publication

University of Edinburgh


There are almost two-thirds more people living with ME/CFS in England than previously thought, a study says.

The new estimate suggests that approximately 404,000 people are affected by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a 62 per cent rise from the previously accepted figure of 250,000.

Researchers also found that people of Chinese, Asian/Asian British, and black/black British ethnicities are substantially less likely to be diagnosed with ME/CFS than white British people.

Experts say the findings highlight that receiving a ME/CFS diagnosis is a “lottery” depending on ethnicity and location.

Improved training of medical professionals and research into identifying accurate diagnostic tests for the long-term debilitating illness should be prioritised as a result, they add.

ME/CFS’ key feature, called post-exertional malaise, is a delayed dramatic worsening of symptoms following minor physical effort. Other symptoms include pain, brain fog and extreme energy limitation that does not improve with rest. Causes are unknown and there is currently no diagnostic test or cure.

Researchers from the University of Edinburgh used NHS data from more than 62 million people in England to identify those diagnosed with ME/CFS or post-viral fatigue syndrome.

They examined the data by gender, age, and ethnicity, and grouped it by different areas of England.

The study found that lifetime prevalence of ME/CFS for the population of women and men in England may be as high as 0.92 per cent and 0.25 per cent, respectively, or approximately 404,000 people overall.

The previous estimate of 250,000 came from the UK Biobank population which contains disproportionately more people who are in better health.

Prevalence of ME/CFS varied widely across England, with Cornwall and the Isles of Scilly having the highest rates, while North West and North East London reported the lowest.

The condition peaked around the age of 50 for women and a decade later for men, with women six times more likely to have it than men in middle age.

Researchers also found that ME/CFS prevalence varies greatly by ethnicity. White people are almost five times more likely to be diagnosed than those from other ethnic groups.

This pattern is consistent across all regions and for both women and men. People of Chinese, Asian/Asian British, and black/black British backgrounds are significantly less likely to be diagnosed with ME/CFS, with rates 90 to 65 per cent lower than white people. The difference is more pronounced than for other conditions like dementia or depression, experts say.

The study is published in medical journal BMC Public Health. It was funded by the National Institute for Health and Care Research, the Medical Research Council and the charity ME Research UK.

Professor Chris Ponting, study lead from the MRC Human Genetics Unit at the University of Edinburgh’s Institute of Genetics and Cancer, said: “The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, depending on where you live and your ethnicity. There are nearly 200 GP practices – mostly in deprived areas of the country – that have no recorded ME/CFS patients at all. The data backs up what many people with ME/CFS say: that they feel invisible and ignored.”

Gemma Samms, ME Research UK-funded PhD student, said: “People struggle to get diagnosed with ME/CFS. Diagnosis is important, because it validates their symptoms and enables them to receive recognition and support. Our results should now lead to improved training of medical professionals and further research into accurate diagnostic tests.”

Journal
BMC Public Health

DOI
10.1186/s12889-025-22603-9

Method of Research
Observational study

Subject of Research
People

Article Title
Unequal access to diagnosis of myalgic encephalomyelitis in England

Article Publication Date
22-Apr-2025

https://twitter.com/user/status/1914780244990681402

 

[Hutan]

This paper hasn't been peer-reviewed yet, but I'd like to make a few comments.

• I think this is the largest ME dataset in the world, with 100,000 people given a diagnostic code of G 93.3 (postal fatigue syndrome, the ICD code that most closely resembles ME, CFS).
• The F:M ratio of 3.9 isn't too far off the roughly 5:1 figure seen in many research studies (which, unlike this one, apply specific diagnostic criteria), and is much higher than is seen for chronic fatigue. That gives me some confidence that many of the subjects have MEcfs, rather than a generic diagnosis.
• A roughly 5x lower rate of diagnosis in other-than-white people is shockingly low even compared with underdiagnosis in other illnesses (fig 3a). There is evidence that, if anything, CFS is even more common in non–white groups.
• The 10–fold range in diagnostic rates across England is much bigger than can be explained by differences in the level of other-than-white populations. This strongly points to big differences in service provision/willingness to diagnose. I think this information should help advocacy for improving services by region, as well as by ethnicity.

Finally, it makes sense to me to assume that the highest rate (amongst white people) – for Cornwall – gives us the best estimate of true prevalence rates in England. Does this make sense to others as well?

I'm a bit surprised that it is acknowledged that location and ethnicity has a big impact on diagnosis rates, but it is seemingly assumed that sex does not. When there is a background of beliefs such as 'ME is a disease of women whose capabilities are smaller than their ambitions', prejudice surely has an impact on diagnosis rates in men and women. I believe the uncertainty should be acknowledged.

Barriers to diagnosing and managing ME/CFS in other-than-white groups have previously been recognised [33]. These will need to be overcome if there is to be equitable access to ME/CFS diagnosis and healthcare.

I speak here as a mother of a son with a diagnosis of ME/CFS. My son's GPs have typically been far more sceptical of a diagnosis of ME/CFS for him than for me. I see the impact of society's view of ME/CFS as a 'women's disease' on both men and women. This paper talks about the issues with barriers to diagnosis in other-than-white groups, but makes no such comment about that being a significant possibility for men.

We know that men are less likely to attend hospital until the later years of life. For reasons including pregnancy/childbirth, women are more likely to engage with a hospital earlier than men.

This weakness of the study reported by the authors is worth noting:

A weakness is that those whose ME/CFS was diagnosed in primary care will only have been included if their G93.3 code was subsequently added to the HES data in secondary care. Primary care diagnoses of ME/CFS left unrecorded in HES data will under-estimate ME/CFS prevalence. This under-estimation could be substantial: among UK Biobank (UKB) participants with a linked ME/CFS code in primary care records and who also have available hospital inpatient data, only 28% are linked to a G93.3 code [37]. This may be due to missing or asynchronous data, but also to UKB HES data being linked to only inpatient, not outpatient, appointments, and to G93.3 not being applied to approximately one-third [15] of patients whose ME/CFS symptoms were not triggered by a viral infection.

This study chose to use the Cornwall current prevalence data as a basis of estimating life-time prevalences. I think that's a bit problematic, and I'm not sure that media has properly understood that the estimates are life-time prevalences.

With this study’s data, we can now estimate the number of people in the UK who would have a ME/CFS diagnosis (i.e. the G93.3 code) if there were minimal social and healthcare barriers to diagnosis. For this, we used the maximal ME/CFS prevalences for white females and males (0.92% and 0.25%, respectively), which are for NHS Cornwall and Isles of Scilly (Fig. 1B). This ICB would be expected to have the highest fraction of diagnosed ME/CFS patients as it has the oldest population (average ~ 45y [females] and ~ 44y [males]), the highest F/M ratio (1.04) and, most strikingly, the lowest other-than-white population (2.0%).

I don't really follow some of this.
"the highest F/M ratio (1.04)"?
Is this saying the ratio is 1.04? That isn't a high ratio, whichever way it goes. And looking at Figure 1, Cornwall and the Scilly Isles has a female/male ratio that is essentially the same as the mean for all of England. The region actually has a very very typical ratio, as reported by this particular source of data. Coventry and Warwickshire has the highest ratio.


To some extent, estimates of prevalence are going to be flawed and, whatever, it mostly doesn't matter a lot. When we can actually, truly, identify people with a specific pathology, things can be sorted out. But, I think harm can be done when the uncertainty around the degree to which ME/CFS is or is not 'a women's disease' is not acknowledged.

 

[hotblack]

I wonder if there’s a way of analysing the records of those who consented as part of DecodeME, in conjunction with this data, to perhaps correct for regional variations in diagnosis or recording practices?

Thinking about it that data probably holds the same problems as it depends upon a diagnosis?

 

[Cinders66]

I'm confused about this study. Does it actually count only those with post-exertional malaise m.e versus the wider Chronic Fatigue syndrome / post viral fatigue syndrome that drs might have diagnosed via wider criteria pre the NICE guidelines 2021? If this is including a wider diagnosis then the UK CMRC news articles, when Crawley etc were involved, were using, if I remember correctly, a 600 000 estimate.

 

[InitialConditions]

I'm confused about this study. Does it actually count only those with post-exertional malaise m.e versus the wider Chronic Fatigue syndrome / post viral fatigue syndrome that drs might have diagnosed via wider criteria pre the NICE guidelines 2021? If this is including a wider diagnosis then the UK CMRC news articles, when Crawley etc were involved, were using, if I remember correctly, a 600 000 estimate.

It's an estimate based on the numbers in England diagnosed with the ICD-10 code G93.3 (Postviral and related fatigue syndromes), which includes ME/CFS, based on analysis of hospital data (not GP records). The study hasn't attempted to disentangle the known problems with misapplication of historic (and likely current) diagnostic guidelines.

 

[Dolphin]

Now on a site for UK GPs:
https://www.pulsetoday.co.uk/news/c...patients-in-england-than-previously-reported/

 

[rvallee]

I could live a million years and never get my head around why people, allegedly educated people, can 1) think and 2) share thought this ignorant of how anything ever gets done:

Well possibly that’s somewhat interesting.

But given that the diagnosis of CFS/ME has pretty much no explanatory, prognostic or therapeutic value, I’m not convinced that there are compelling grounds to go searching for the “missed” patients.

This is the attitude that would have left us living in holes in the ground, eating stuff on the ground, and probably vomiting right where we sleep, because why bother changing something that doesn't work?

What's worse is that such commenters very likely know all of this, and are simply saying this to communicate... this:

 

[dratalanta]

The article uses NICE’s ME/CFS throughout. That comment uses CFS/ME for a reason.

Also note the claim that the diagnosis has no therapeutic value. That is false.

NICE guidance not to recommend GET is therapeutically important, because it is harmful to patients. GPs are likely to advise patients reporting idiopathic chronic fatigue to increase their activity levels. The diagnosis is needed to prevent this.