ME Epidemiology - prevalence, peak ages of onset and gender ratio

From 2011
"In their report, the overall minimal yearly incidence (new cases) was 0.015%, implying that potentially around 9,300 people develop the illness in the UK each year. Furthermore, the estimated minimum prevalence rate of ME/CFS was 0.2% , which accords with previous estimates and implies (all things being equal) that a minimum of 125,000 people are living with ME/CFS (however defined) in the UK. About half of these patients (0.11% or potentially 68,300 people) also met the more stringent Canadian definition"
https://www.meresearch.org.uk/how-many-people-have-mecfs/, which is an article about the study that Jo mentions directly above.

0.11% of last reported UK population (c. 69 million) would give an updated (albeit pre-Covid) figure of c. 75,900 people.

The registration of interest in DecodeME of over 25k also suggests that there are far more pwME than your estimate.

There are a lot of potential reasons not limited to;
forums are now an 'old' and unfashionable way of communicating compared to other social media platforms,
many/most ME patients are cognitively challenged, making participation on forums difficult,
many patients won't be aware of forums given their lack of participation with the patient community.

 

Here is the paper for those interested: https://pubmed.ncbi.nlm.nih.gov/21794183/


Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care

Abstract
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. Attempts to estimate the burden of disease have been limited by selection bias, and by lack of diagnostic biomarkers and of agreed reproducible case definitions. We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research.

Methods: We compared the clinical presentation, prevalence and incidence of ME/CFS based on a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in three regions of England. Case ascertainment involved: 1) electronic search for chronic fatigue cases; 2) direct questioning of general practitioners (GPs) on cases not previously identified by the search; and 3) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.

Results: The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. The overall estimated minimal yearly incidence was 0.015%. The highest rates were found in London and the lowest in East Yorkshire. All but one of the cases conforming to the Canadian criteria also met the CDC-1994 criteria, however presented higher prevalence and severity of symptoms.

Conclusions: ME/CFS is not uncommon in England and represents a significant burden to patients and society. The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care. We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants. This combination if used systematically will enable international comparisons, minimization of bias, and the identification and investigation of distinct sub-groups of patients with possibly distinct aetiologies and pathophysiologies, standing a better chance of translation into effective specific treatments

 

I had clearly misremembered which number went with the Canadian criteria.However, it is interesting to note the word 'minimum'. Talking to Luis Nacul my impression was that they thought 0.2% was probably a fair estimate of the true prevalence - presumably the expectation is that a significant number of people are still waiting to be diagnosed.

 

Moved post from this thread

I'd guess ME affects 1 in 5000 people so from an 85,000 population there would be 17 patients. I don't think that's enough for good research. Chronic Fatigue on the other hand probably affects 2 in 100, may be more, so there would be plenty patients for that research.

 

The UK's current population is 68,350,000 according to https://www.worldometers.info/world-population/uk-population , 0.4% of which would be 273,400. There's no way that many people have real ME where exercise harms them.

 

Yes, you have repeatedly claimed this without presenting any evidence to back your argument up.

 

To be fair I haven't seen any good evidence to the contrary, for example a prevalence study based on the ICC criteria alone.

For example this study (https://pubmed.ncbi.nlm.nih.gov/21794183/) gives a prevalence of 0.19% based on the CDC 1994 criteria which I don't classify as being real ME. Even with that too broad criteria that would make only 129,865 ME patients in the UK, just under half of population @Hutan claimed had ME.

 

@Andy @Hutan

Inflating the numbers is really bad for credibility of real ME patients. If there are over 100,000 misdiagnosed as having ME all claiming exercise didn't worsen their condition or even led to improvement, it's going to make us sound like delusional conspiracy theorists.

 

The way it felt for me as male adolescent with (maybe) ME/CFS was that I wasn't allowed to be ill. There was a lot of pressure to go to school and my symptoms were reinterpreted to fit the belief system of the adults. I was not considered a credible witness to my own condition (and indeed, I was very confused by what was happening, but still not as confused as everyone else). I was expected to push through, and if that didn't work or I refused to do it, then that was a behavioural/psychological problem. A teacher convinced himseld that I had a secret drug addiction. These may reflect more the dysfunctional in my family and school environment than society's attitudes.

Even though I clearly was ill (in retrospect), I didn't see myself as having an illness but kept trying to make the aforementioned approach given to me by the adults work. Until at some point, after many crashes, each causing more demoralization and despair, I rebelled against it. Then I was no longer pressured as much, but instead abandoned, as a "bad person".

I see a lot of similarities between this dynamic I exerienced and the PACE trial author approach to ME/CFS.

 

I think it's more acceptable for a woman to not work full-time than for a man.

And indeed what I've seen in the ME community is very few men who can't work full-time ending up with a more serious relationship (as defined by a composite of starting to live together/getting engaged/getting married/having children) while it's not rare for women who can't work full-time to end up with a more serious relationship (as defined by a composite of starting to live together/getting engaged/getting married/having children).

Working full-time is very challenging with ME/CFS. I don't think it's easier than working part-time (or not at all) with some extra domestic chores.