ME Epidemiology - prevalence and peak ages of onset

Several posts moved from this thread

The 250,000 figure is way over inflated. See: https://www.s4me.info/threads/non-e...-psychological-me-research.18266/#post-311827 for more discussion on the issue.

 

The 250, 000 pops up in the NICE draft guideline in the "context" section at the end on p71:

https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

They cite the UK Biobank:

"Recent data from the UK Biobank suggests that there are over 250,000 people in 16 England and Wales with ME/CFS, with about 2.4 times as many women affected as 17 men."

I had not seen reference to the UK Biobank in this context before; thought this was relevant. Are we sure it's inflated in that case?


May be in other places in the document but FWIW in this connection it's also referenced in the draft on p7 and p37 here with a citation:

https://www.nice.org.uk/guidance/gid-ng10091/documents/supporting-documentation-2

"Myalgic encephalomyelitis (ME) and/or chronic fatigue syndrome (CFS) is a poorly understood illness that affects approximately 250,000 people in the UK. It is estimated that around 25% of adults with ME/CFS experience severe symptoms or illness presentation."

"Epidemiological prevalence estimates (that commonly vary between 0.1% to 1%) suggest that there are around 250,000 people living with ME/CFS in the UK. This would suggest that approximately 62,500 sufferers may experience severe illness presentation. A general practice with a population of 10,000 patients is likely to have 30–40 patients with ME/CFS and around half of these are likely to fall into the moderate-to-severe category and may need input from specialist services (Group, 2002)"

 

250,000 just sounded good and there has to be that many worldwide!

I can't help but feel if there were 30 - 40 patients with ME in each practice with 15 - 20 of them moderate to severe then GPs would have a better idea of how the illness impacts people.

I had more understanding that I was genuinely ill from doctors that had known me before than from ones who only know me ill. Especially since women see their doctor often for things like smear tests, pregnancy and then children's ailments GPs should know that something has gone wrong to make them so sick with at least some of the patients. A child they have known from birth who is suddenly confined to bed, a man who has never been ill before, they should have a lot of experience with them.

I think the opposite is true. GPs see people who want to be considered invalids, are always ailing and those who have mental health problems often by the nature of things so it is easy for them to believe that ME is just another form of it.

 

Same - I have one doctor who helps me at the practice and she knew me before. (I am terrified of her retiring). However she also once told me a decade ago that I was the most severe case she had ever seen. This worried me at the time as I was still able to go and see her for appointments and knew there were people much more ill than me (although I was severe and quite unwell). However you only get a tiny amount of time with her and you don't have any time to go into it so she has no idea how it impacts me, really.

I know we have different ideas of what we think of as "severe" but it seems unlikely that there are that many severe patients at my practice, certainly;
she has subsequently said I am an "unusual" case whereas I actually have quite bog-standard boring ME/CFS (I tend to think of EBV history as somewhat of a cliche) and I think this comment was a reference to severity despite the fact that I spent most of the last decade as moderate. (Now severe). I got the sense the other ME/CFS patients (she did make reference to others she had last time I spoke to her!) are less severe and are able to tolerate a different kind of management. She is generally very sensible and quite experienced so I found these comments interesting. Others in the practice have no idea about ME/CFS and one simply laughed at me once telling me it wasn't a real illness, so I do not see anyone else.

 

The 250,000 figure is based on the flawed CDC 1994 criteria. I would estimate that only about 5000 to 10,000 people in the UK have real (exercise harms you) ME. The rest probably have some other fatiguing disorder. Why do you think there are so few ME patients on forums?

 

My memory is that the formal epidemiological study by Nacul, Phebe et al estimated 0.2% for narrow Canadian-type criteria, which would be about 130,000 for UK. Also judging from numbers that I have encountered and GP friends have encountered I think significant long term ME must be present in at least 100,000. I do think the UK Biobank figure may be inflated but not by much more than x2.

 

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.