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

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.

 

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/

 

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?

 

Merged thread

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

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.

 

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?

 

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.”

 

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.

 

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.

 

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…

 

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.

 

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

 

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?

 

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.