Prevalence of (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care, 2011, Lacerda,Nacul

[Sly Saint]

Not new but thought it should be here.

"
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."

https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91

 

[Creekside]

The highest rates were found in London and the lowest in East Yorkshire.

I wonder whether that simply a bias due to education levels, economic status, or some other such factor that affects reporting of ME. It might even be that doctors in that locale tend to come from different education or cultural backgrounds, which affects their diagnosing or reporting of ME. They should repeat the exercise for other diseases and see whether there's a difference in medical care between urban and rural areas.

 

[Amw66]

I wonder whether that simply a bias due to education levels, economic status, or some other such factor that affects reporting of ME. It might even be that doctors in that locale tend to come from different education or cultural backgrounds, which affects their diagnosing or reporting of ME. They should repeat the exercise for other diseases and see whether there's a difference in medical care between urban and rural areas.

Here locally GPS do not diagnose ME/ CFS.
In children paediatrics diagnose.
Adults commonly have Post viral syndrome / post viral fatigue. We have no specialist clinics etc.
I wonder how the study would have fared here.

 

[alktipping]

I wonder whether that simply a bias due to education levels, economic status, or some other such factor that affects reporting of ME. It might even be that doctors in that locale tend to come from different education or cultural backgrounds, which affects their diagnosing or reporting of ME. They should repeat the exercise for other diseases and see whether there's a difference in medical care between urban and rural areas.

it will just be down to population density the london area covers 10 million people west yorkshire is more rural i do not know the actual population size but imagine its less than two million .

 

[lunarainbows]

Is the Canadian criteria the one that’s used in studies as it’s meant to be most accurate? (Isn’t that the one decodeME uses)?

So just on that rough estimate, (I know it says minimum prevalence): 0.11% of 66 million = gives 72,000 people with ME in the U.K.? That’s 1/3 of the 250,000 that’s always cited.

 

[Wonko]

This confuses me as, as far as I know, the NHS does not use the CCC, and never has done.

So, logically, the number of people in the UK diagnosed using it should be zero (or close to), so the prevalence rate of ME, in the UK, using the number of people diagnosed using the CCC, should be zero.

I could of course, as is normally the case, be wrong

 

[Jaybee00]

Is it possible that MECFS is much rarer than acknowledged?

For example.

Prevalence of ALS is 1 out 20,000 people or 0.005%--so MECFS has ~40X the prevalence of ALS. Now look at this anecdotal "stuff"

https://en.wikipedia.org/wiki/List_of_people_with_amyotrophic_lateral_sclerosis
https://en.wikipedia.org/wiki/List_of_people_with_chronic_fatigue_syndrome

A lot more people on the ALS list and a lot more people you have heard of on the ALS list.

MS prevalence is about 0.3% So a little bit higher than MECFS

https://n.neurology.org/content/92/10/e1029

https://en.wikipedia.org/wiki/List_of_people_with_multiple_sclerosis

MS has it own journals, large conferences, huge amount of treatments, etc.
https://www.nationalmssociety.org/Treating-MS/Medications

There are no big "celebrities" with MECFS, no big annual conferences, no dedicated journals and no treatments.

Anyone else skeptical with these high-ish estimates for the prevalence of MECFS? Is it possible that the prevalence is much lower?

 

[NelliePledge]

As someone who has gradual onset undiagnosed ME for a decade i wouldn’t be confident that I would have been picked up by this. How many of us had depression or anxiety diagnosis before getting diagnosed with MECFS . I suspect there are a number of undiagnosed, PWME whether completely undiagnosed or incorrectly diagnosed with something else just as there are a % of people misdiagnosed with ME

 

[Jonathan Edwards]

Anyone else skeptical with these high-ish estimates for the prevalence of MECFS? Is it possible that the prevalence is much lower?

I don't think so. The number of celebrities seems a pretty useless measure. The lack of conferences simply reflects the lack of any research programme because nobody has made much progress. I know a fewl people with ME through social contact - about the same as I do for MS and rheumatoid. So it is likely the prevalence is of a similar order of magnitude. Rheumatoid is about 0.5%. MS a bit less. I don't know of anyone with lupus or ALS or EDS, where the prevalence is in the 0.001-0.01 percent range.

I am presuming that this is the paper that comes out with a ball park figure of 0.2% for ME.

 

[Jonathan Edwards]

A lot more people on the ALS list and a lot more people you have heard of on the ALS list.

I have heard of nobody on the ALS list except Steven Hawking. On the ME list I have heard of David Putnam, Cher, Clare Francis, Susan Blackmore, Michael Crawford, Brynmore John, John Rutter, Ken Wilber.

 

[Jaybee00]

OK--but maybe you missed these two folks from the ALS list?

• David Niven (1910–1983), British actor.[82]
• Mao Zedong (1893–1976), Chinese statesman.[112]

 

[Jonathan Edwards]

• Mao Zedong (1893–1976), Chinese statesman.[112]

Must have been a pretty weird sort of ALS. He was active until he was about 80 if I remember.

 

[FMMM1]

I don't think so. The number of celebrities seems a pretty useless measure. The lack of conferences simply reflects the lack of any research programme because nobody has made much progress. I know a fewl people with ME through social contact - about the same as I do for MS and rheumatoid. So it is likely the prevalence is of a similar order of magnitude. Rheumatoid is about 0.5%. MS a bit less. I don't know of anyone with lupus or ALS or EDS, where the prevalence is in the 0.001-0.01 percent range.

I am presuming that this is the paper that comes out with a ball park figure of 0.2% for ME.

Can't remember the figure the EU uses for classification as a "rare" disease @Michiel Tack - 0.05%?

Numbers I recall quoted for ME/CFS are 0.4%.

 

[ME/CFS Skeptic]

I am presuming that this is the paper that comes out with a ball park figure of 0.2% for ME.

If I recall correctly, the study identified cases based on GP's records so if the GP's didn't diagnose people with ME/CFS, patients would have been overlooked. So the 0.2% is likely a low estimate.

 

[ME/CFS Skeptic]

Can't remember the figure the EU uses for classification as a "rare" disease @Michiel Tack - 0.05%?

Can't remember, but it was something like that, much lower than common estimates for ME/CFS.

 

[DigitalDrifter]

...has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms.

Yes it has been, but should never have been. An ME diagnosis should be reserved for those who experience an adverse reaction to exercise or exertion. A lot of harmful confusion would have been avoided if this was the case.