2023: looking back on a year of ME/CFS research

ME/CFS Skeptic

ME/CFS Skeptic

Senior Member (Voting Rights)
We've written a review of the most interesting ME/CFS studies of 2023. Would be interesting to hear if we missed any important studies that should have been included.
https://mecfsskeptic.com/2023-looking-back-on-a-year-of-me-cfs-research/

This was quite a lot of material to process so there are likely some errors in the text. Feel free to let us know if you spot any - will update the text asap.
 
ME/CFS Skeptic said:
We've written a review of the most interesting ME/CFS studies of 2023.
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Thank you so much - this was a very enlightening read. Seems like there were more ME/CFS studies of value this year than last year. I'd be fascinated to see a similar post done on this year's Long Covid research, though that may be a rather tall order given how many Long Covid studies seem to be published (quite a few of which seem to be of questionable quality, making it difficult for non-experts like myself to sort the wheat from the chaff).
 
That must have been a bit of work!

I thought the research by Rob Wüst's team interesting as well (finally someone looking at muscles and metabolites w.r.t. PEM!), even though the majority of it hasn’t been published yet (some of their work was published here and other parts have been discussed at conferences and subsequentially here and here). I also thought their letter on PEM was nice to which @Grigor contributed, as well as Knoop, Rosmalen and friends loosing some of their superiority to colleagues that have newly entered the field and publicly criticised them (even though I don't see anything changing due to the lack of funding for biomedical research). As horribly dissapointing ZonMW in the Netherlands once again has shown to be, stichtinglongcovid has been the exact opposite.

I have to say the Prusty findings would have been a massive disappointment for me, had I expected anything close to what was "promised" online. For now the research in Germany seems to be essentially only focused on GPCR-aabs, will that change once the results come in next year?

Overall, a rather dissapointing year, especially in the LC field with the very large majority of LC studies being of extremely questionable quality. It seems some LC researchers have finally begun to understand that it doesn't make any sense to study the heterogeneous effects of anything happening 4 weeks after a viral infection all bundled together, but has this realisation come too late with funding drying out?

Apart from viral persistence in LC (which I'm not too hopeful about) I can't say there's much US research I'm looking forward to in the upcoming year. With the UK looking ever grim, the DecodeME study at least provides some hope.
 
This is your usual brilliant work and fabulously helpful to someone too ill to follow research much this year. Thank you.

Comments rather than corrections:

The main limitation of the DecodeME is that participants self-reported having an ME/CFS diagnosis made by a healthcare professional. The study did not include a clinical examination as most ME/CFS diagnostic criteria require.
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Just a note that the study did include an extensive questionnaire to check if people met IOM criteria and/or CCC according to symptoms, inc PEM. However, everyone who completed the questionnaire was included in this initial analysis, regardless of whether they met the criteria.

the strong female predominance: 83.5% were female. Although these figures may have been skewed by various biases (females may, for example, be more likely to be diagnosed with ME/CFS than males), it is quite remarkable that the difference was so large. There were 5 times as many female as male participants. In comparison, a recent review on chronic fatigue showed a much weaker female predominance where only 58% of patients were female. The high number of female ME/CFS patients has also been found in several prevalence studies so it might be telling us something important about the pathology of ME/CFS.
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This is a good point.

Re the CDC prevalence finding of 1.3%
We suspect that confusion surrounding the term ‘chronic fatigue syndrome’ may have distorted the results of questionnaire studies. Participants with fatigue problems other than ME/CFS (burnout, sleep disorder, idiopathic fatigue, etc.) might have responded ‘yes’ to the question if they had been told they have CFS or ME. The age distribution of the CDC survey hints towards that explanation. It shows that ME/CFS prevalence was highest in the group aged 60-69 which is at odds with previous epidemiological studies.
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Yes, and the sex ratio was also much lower (63% female).

Note that DecodeME primarily recruited from social media, mostly 'organic' (via networks, not paid) so will have recruited heavily from the ME/CFS online community, rather than from a broad national sample like the CDC. I suspect there would be less confusion over 'chronic fatigue' within the MEcfs community.

Nurses cohort study
In another large study published in 2023, researchers contacted more than 40,000 nurses for an email questionnaire. 102 (0.2%) of the nurses met the Fukuda criteria for ME/CFS, while another 522 (1.2%) had chronic fatigue but without additional symptoms. The most interesting result of this study was that increasing age, BMI, smoking, alcohol intake, etc. were all significant predictors for severe fatigue but not for the ME/CFS group.
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That's very interesting. Being female didn't seem to be a risk factor for MEcfs vs chronic fatigue, which surprised me, but I only glanced at the paper - was there anything there?
 
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ME/CFS Skeptic said:
Would be interesting to hear if we missed any important studies that should have been included.
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Differential Cardiopulmonary Hemodynamic Phenotypes in PASC Related Exercise Intolerance.

Late LC entry from today but gets 5 stars from me and makes it in to my top papers for the year. You might prefer to hold it over til next year :)

1. Shows abnormalities with iCPET when all other tests had been normal.
2. Dismisses deconditioning as an explanation and in fact shows the opposite in patients.
3. Shows peripheral oxygen extraction is the problem.
4. pEO2 decrease could be due to failure to direct blood flow appropriately, or capillary-to-mitochondrial diffusion inadequacy.
5. Their prior paper suggests the latter: a problem getting O2 from capillary to muscle and using it appropriately in the mitochondria.
 
I appreciated your summary and there's a decent amount of good research here. I'm surprised you listed the home-based testing and FUNCAP questionnaire as honorable mentions--I saw them as pretty significant. The home testing study found that doing cognitive testing made pwME exceed their anaerobic threshold, which seems very significant.
 
RedFox said:
I'm surprised you listed the home-based testing and FUNCAP questionnaire as honorable mentions--I saw them as pretty significant. The home testing study found that doing cognitive testing made pwME exceed their anaerobic threshold, which seems very significant.
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The main reason is that it was a feasibility study with only 17 patients and no controls so I do not have high confidence in the results yet. The methods used however look like an important step in the right direction.
 
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