ME Epidemiology - prevalence and peak ages of onset

[Chandelier]

Almost everyone has had Covid now and going about normal social activities I do not detect any sudden increase in the number of people with ME/CFS as such.

That’s interesting.

The German society for ME/CFS mentions a doubling of incidence:

Die geschätzte Prävalenz betrug präpandemisch 0,3 % der Bevölkerung. Auf Deutschland umgerechnet sind dies 250.000 Erkrankte. Die Kassenärztlichen Bundesvereinigung gibt für 2023 einen Anstieg der Behandlungsfälle mit ME/CFS auf 620.000 Behandlungsfälle an.

So does the Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement:

Studien zufolge ist aufgrund der SARS-CoV-2-Pandemie mindestens mit einer Verdoppelung der Anzahl der Betroffenen zu rechnen [6, 19].

And the ME/CFS Research analysis talks about rising costs for ME/CFS.
From a Spiegel article:

• Die Zahl der an ME/CFS Erkrankten ist gestiegen: Ende 2025 waren es 657.000, knapp 7000 Menschen mehr als Ende 2024. Kurz vor der Pandemie litten in Deutschland Schätzungen zufolge bis zu 400.000 Menschen an ME/CFS, die Zahl der Betroffenen hat sich also durch Corona deutlich erhöht.

I‘m not saying that you’re wrong, I just notice that the incidence doubling narrative is pretty prevalent, at least in Germany.

 

[Jonathan Edwards]

I‘m not saying that you’re wrong, I just notice that the incidence doubling narrative is pretty prevalent, at least in Germany.

But such a 'doubling' would be totally unsurprising if diagnostic ascertainment had shifted a bit - which it will have done in any country where there is a debate about this.

Diagnostic criteria are always a pragmatic trade off in terms of separating groups of people in a context of other disease prevalences and a whole range of psychosocial factors. (This is where psychosocial factors really do matter - how many GPs have heard of the diagnosis etc.) If the prevalence of an alternative diagnosis shifts then your diagnostic criteria may no longer be ideal. If post-viral fatigue suddenly affected 25% of the population in a year - which I would believe for post-Covid, then we probably have to re-write diagnostic criteria for ME/CFS in that context.

 

[Peter T]

I‘m not saying that you’re wrong, I just notice that the incidence doubling narrative is pretty prevalent, at least in Germany.

I also thought I had seen it said that the incidence in the UK has doubled following the pandemic, though I no idea now where that was.

The MEA talk in their 2025 booklet of a 62% increase in prevelance compared to historical figures, but I don’t know if they distinguished between an impact of Covid and newer approaches to how the figure is estimated.

 

[Chandelier]

I also thought I had seen it said that the incidence in the UK has doubled following the pandemic, though I no idea now where that was.

I couldn’t find anything about the UK specifically, but this US-based study claims:

Researchers found that new cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) were 15 times higher than before the COVID-19 pandemic.

RECOVER study finds COVID-19 increases risk of developing ME/CFS

RECOVER researchers found that people were more likely to develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) after having COVID-19. Most of the people who developed ME/CFS also developed Long COVID.

recovercovid.org

Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study, 2024, Vernon +

 

[Silip]

That’s interesting.

The German society for ME/CFS mentions a doubling of incidence:


So does the Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement:


And the ME/CFS Research analysis talks about rising costs for ME/CFS.
From a Spiegel article:


I‘m not saying that you’re wrong, I just notice that the incidence doubling narrative is pretty prevalent, at least in Germany.

Do we have a thread on here to discuss the prevalence of ME in general? With a brief search I didn't really find one. I know it's difficult to have reliable numbers on this because especially in the past you had a) people with a 'CFS' diagnoses who didn't really fullfil the criteria and b) at the same time probably many people with ME who stayed undiagnosed for years.

I'd love to discuss this a bit more, as apart from the doubling narrative for me the calculations by the Research Foundation in Germany seem a bit far-fetched and rather on the high side.

 

[Felis Catus]

I think they do, as they do with post-EBV fatigue. Both are common but not serious for most. I wouldn't talk of M.E. anyway. I think mentioning ME/CFS makes sense but it is not entirely clear even now that Covid has changed the number of people with ME/CFS. Almost everyone has had Covid now and going about normal social activities I do not detect any sudden increase in the number of people with ME/CFS as such. For the few who developed ME/CFS after Covid that may seem dismissive but what matter are the figures.

If the prevalence of a disease went from 0.5% to 1%, i.e. doubled, would people going about their life notice it, though?

 

[Chandelier]

If the prevalence of a disease went from 0.5% to 1%, i.e. doubled, would people going about their life notice it, though?

The crazy thing is that there are institutions that deny any LC & ME/CFS diagnosis on principle to this day.
Examples that I know of are
- the children hospital UKKB in Basel
- the children hospital UKE in Hamburg

It has to be assumed that such neglect was even more prevalent before the pandemic.

 

[Felis Catus]

If the prevalence of a disease went from 0.5% to 1%, i.e. doubled, would people going about their life notice it, though?

Coincidentally, my GP told me today that in the past they'd have a patient with this type of post-viral condition in the surgery every now and then, but with COVID the problem has become hard to ignore. I don't think he's misdiagnosing people because he surprised me with how much he knew about PEM, amongst other things.

 

[ScoutB]

Per my spamming of the Environmental factors thread, I have been trying to find recent (covid-era) ME/CFS prevalence data. I wanted to know if we have any solid data, even just for one country, that would show a bump in ME/CFS rates if covid has indeed caused one.

There are plenty of papers trying to estimate ME/CFS prevalence from LC. However, as others have written, this seems extremely messy as the rate of ME/CFS in pwLC will vary depending on how long the individuals have had LC, so trying to apply that conversion rate to an estimate of LC prevalence could easily go wrong.

So I was hoping for a direct estimate of ME/CFS via some population sampling or maybe a national data set. The one thing I could find was:
Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms
Unfortunately for my purposes, their data cuts off in 2023 and requires that the patient has visited a hospital (and been coded there I think). As the authors mention, there may be people newly meeting the ME/CFS criteria who just haven't been captured by the dataset.

I'm vaguely aware other countries might have data from national registries, like Norway? I haven't found any recent analysis of data like that yet but let me know if I'm just missing it. (Maybe I've been limited by searching in English)

 

[Utsikt]

I'm vaguely aware other countries might have data from national registries, like Norway?

Norwegian GPs use a different coding system than the specialists and hospitals that use ICD-10, and the code for ME/CFS is the same as the one for fatigue for GPs, so the prevalence data won’t be accurate.

And e.g. Sommerfelt talks about how barely any children get ME/CFS diagnoses from hospitals anymore, so you’d miss out on many of the young age onset patients from the pandemic.

Norway is also deep in both ME/CFS and LC denial.

 

[ScoutB]

For completeness, linking a thread that has lots of good comments about this issue:
The persistence of [ME/CFS] after SARS-CoV-2 infection: A systematic review and meta-analysis, 2024, Dehlia et al
(we had concerns about the systematic review)

 

[ScoutB]

Btw, I've been tracing sources on the 'ME/CFS rates have doubled' claim and so far they seem to link back to this projection from early in the pandemic:
Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

Which, um, assumes 10% of everyone infected with covid will get ME/CFS:

To estimate the number of people in the U.S. who may develop “long COVID” we make two conservative assumptions: (1) the introduction of effective vaccines in late 2020 and early 2021 will constrain the total number of people in the U.S. who become infected with SARS-CoV-2 to only 25 million Americans by the end of 2021; and (2) although over 50% of people with confirmed or suspected COVID-19 state that they remain with lingering symptoms at 3 months, we assume that only 10% will be left with an illness that meets the NASEM case definition for ME/CFS.

So their actual estimate was that, with only half the population infected, ME/CFS rates would double in *one year* (and presumably be at least 10% now).

There could still be a big bump, this just wouldn't be the first study I'd cite about it..