Systematic Review of the Epidemiological Burden of ME/CFS Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology 2020

Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology

https://www.mdpi.com/2077-0383/9/5/1557

 

3 studies were included in their screening, the results are too different to be interpreted.

The article correctly assesses that:

A sensible recommendation given the above?

The UK GWAS study intends to screen prospective participants directly (no referral) using CureME's questionnaire, right?

But a very, very bad bit for epidemiology purposes is saying that the CDC-1994 criteria can be used on their own. Unlike the previous paper from the socio-economics working group*, the recommendation of using multiple diagnostic criteria out of CDC-1994, CCC and IOM is only "additional":

* The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE). https://www.mdpi.com/2227-9032/8/2/88/htm

 

Almost. Potential participants will be required to confirm that they have had an official diagnosis of ME (or CFS, CFS/ME, ME/CFS) recorded in their medical records, and then they will be screened by CureME's questionnaire. Given the numbers that we need to recruit, we certainly won't, and can't, be relying solely on medical professionals referring their patients on to the study.

 

The long and the short of this review is that nobody's been interested enough in us to even figure out how many of us there might be (in Europe). No surprises there. Sigh.

One of the three - three! - studies that made it into the review was done in Iceland in 2001 so didn't include any of the more recent criteria for the simple reason they didn't exist yet. But usefully the study did try to compare prevalence according to 4 different criteria in use at the time, with results ranging from 0 to 4.9% (Holmes and Lloyd criteria respectively).

It is notable that many of the CFS respondents worked full time and put their illness down to stress or overwork - hmm....

Strangely, the authors appear to make a difference between CFS and Iceland Disease which I thought was considered an early ME outbreak? But they don't explain any further, just make that weird comment about phobia levels being the same in CFS and Iceland Disease.

That this study still figures amongst the three most relevant prevalence studies in Europe today really says it all.

A general question about statistics:

They say: "As the population of Iceland totals about 280000 inhabitants, a random sample size of 4000 was deemed to be quite sufficient."

Is that a valid approach when you're looking for something you expect to be quite rare? In this case they would have expected results potentially as low as 1/1000, so 4000 questionnaires sent out - 63% of which were completed - seems low? In the event they didn't find anybody at all fitting the Holmes criteria.

Sorry about the weird copy & paste effect.
Líndal, E., Stefánsson, J. G., & Bergmann, S. (2002). The prevalence of chronic fatigue syndrome in Iceland - A national comparison by gender drawing on four different criteria. Nordic Journal of Psychiatry, 56(4), 273–277. doi:10.1080/08039480260242769
sci-hub.se/10.1080/08039480260242769

 

If they don’t count you, you don’t exist, no problem, right?