Review An Overview of Severe Myalgic Encephalomyelitis, 2026, Vink & Vink-Niese

DMissa said:
Not be harsh but to just be honest about the area that I understand to the assay level of detail, the papers cited in the impaired mitochondrial function section don't make a case for mitochondrial problems in ME/CFS.

The Tomas work (in spite of having become the de facto mitochondrial citation) was always explicable by PBMC proportion shifts and has more recently failed replication multiple times.

The muscle work in Long COVID is cited as preprint and has not had replication attempts which is particularly important for muscle studies due to higher risk of sampling artefacts & activity or nutritional confounders.

Why not cite Paul Hwang's WASF3 paper? It is easily the best available evidence relating to changes in respiration.
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Paul Hwang's WASF3 paper is a n=1 paper though.
 
jnmaciuch said:
Several experiments were only n=1, but the 2023 PNAS paper includes muscle biopsies from a small cohort validating the levels of a few of the identified proteins
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Thanks Jess, this is what I had in mind. And perhaps more importantly the demonstration of a putative mechanism by inductive experiments in models in addition to the patient measurements (which is almost never done in the field).

I will take a small cohort of rigorously selected samples interrogated by a chain of inductive reasoning that makes biological sense over a larger study that is confounded at the design, technical and biological levels.

Perhaps a more salient point emerges from this... none of the evidence in this area is strong enough to be pointed to as a feature of the illness. (Spoken as someone who groans when he remembers his PhD papers in the area).

In any case this is a tiny part of this paper, but if we don't discuss these things we may perpetuate misconceptions about what we do and don't know, and I think we would all agree that having clarity on this is a major priority. This is intended from a position of good will
 
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Mark Vink said:
Of note for some of the commentators here, the conclusion from the 3 reviewers:
“This is not so much a review article as a whole textbook on ME/CFS! It is extremely comprehensive, covers every area of the illness, from clinical features, epidemiology, reactions of the medical profession” and is “supported by an extensive and appropriate body of literature.”
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But is this not just symptomatic of the low level of critical thinking in the field as a whole?
 
Mark Vink said:
It could also be that it is the other way around and that that applies to some of the comments on this site and not to the comments by the reviewers, or not?
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As someone who peer reviews 15+ papers a year I can promise you that s4me discussion is more effectively critically and detail-oriented than 9/10 peer reviews. I got 7 reviews back total on my last paper. It was eventually clear to me that 2/7 of them read the paper properly. I initially thought otherwise but later realised 3/7 of the others blatantly put it through chatgpt and pasted the response in, 1/7 read the abstract and threw a tantrum that was factually incorrect, and 1/7 was talking about a literature review of synthetic materials in flight simulators, not a study of cells from people with ME/CFS. This was all in journals with good standing. Had I not discovered this forum I’d be a quarter of the scientist I am.
 
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jnmaciuch said:
Several experiments were only n=1, but the 2023 PNAS paper includes muscle biopsies from a small cohort validating the levels of a few of the identified proteins
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The study is from Dr. Brian Walitt and his effort preference study with a very small number of patients of whom 4 recovered spontaneously, and what they write there is about mice.
 
Mark Vink said:
The study is from Dr. Brian Walitt and his effort preference study with a very small number of patients of whom 4 recovered spontaneously, and what they write there is about mice.
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Yes, samples from intramural. No, not mice. That's a separate result. The point is that the Hwang paper presents a methodical and cohesive story. The sequential combination of results is the important part. Wallitt being on the Hwang paper doesn't mean it should be discarded.

(Figure 5 in the Hwang paper for those wanting to look)

This is going off the rails. The more important point was that the papers cited do not tell us that ME/CFS features a mitochondrial defect (although probably none do, but DecodeME and the WASF3 paper are interesting avenues for follow-up).
 
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I’ve not got through the full paper yet, hoping the html version will be available soon and work with text to speech, but from what I’ve read I did want to add a comment.

Firstly thanks to @Mark Vink for getting involved with the discussion, it’s always great to see authors here.

For obvious reasons I really like the focus on severe and v severe me/cfs and the descriptions of this, the impacts and issues raised are great. It could be a really good advocacy document and is better than plenty of what we see on this front. There’s clearly been a lot of work put in and aspects are thorough.

Agree with other comments on the 2-day cardiopulmonary exercise testing though. It seems odd to call this out specifically in the conclusions when there are question marks over the value of it. Particularly in severe patients who are the focus here.

Overall there seems to be mixed purposes at times, which causes some problems for both. Split into two pieces, an opinion or advocacy piece and a literature review may have been more effective? A sign I think more of the common difficulty we have in the field with urgent needs and not a great deal of good evidence to back up those needs rather than anything else.

I think we have discussions on most/all of the papers referenced ? Maybe if the author has time or is interested they could look at them? I’m sure members would be happy to help dig them out.
 
Thank you @Mark Vink for your extensive efforts in producing this article. I note that it is not intended as a systematic review that assesses the validity of research findings, but rather an overview of what little research there is that focused on severe, very severe and extremely severe ME/CFS.

That approach carries a risk, as others have pointed out, that studies that haven't been replicated are included, leading perhaps to greater credence given to some biomedical findings that is warranted at this stage. You acknowledge that in the abstract:
"Biomedical research into this disease has been scarce and underfunded for decades"

However, there is much of value here, drawing together research demonstrating the harm being done to people with very severe ME/CFS who are not given adequate medical and nutritional support, and the harm caused by incorrect psychologisation of ME/CFS by many doctors.
 
Mark Vink said:
It could also be that it is the other way around and that that applies to some of the comments on this site and not to the comments by the reviewers, or not?
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Lots of comments here lack critical thinking - that is not in doubt - but you bet that by the end of a week the critical thinking has pitched up and members have sorted out the wheat from the chaff. I am repeatedly criticised for not being critical enough about things and learn a huge amount. I think it would be hard to argue that anyone much gets away with uncritical thinking here!
 
DMissa said:
As someone who peer reviews 15+ papers a year I can promise you that s4me discussion is more effectively critically and detail-oriented than 9/10 peer reviews. I got 7 reviews back total on my last paper. It was eventually clear to me that 2/7 of them read the paper properly. I initially thought otherwise but later realised 3/7 of the others blatantly put it through chatgpt and pasted the response in, 1/7 read the abstract and threw a tantrum that was factually incorrect, and 1/7 was talking about a literature review of synthetic materials in flight simulators, not a study of cells from people with ME/CFS. This was all in journals with good standing. Had I not discovered this forum I’d be a quarter of the scientist I am.
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Without sharing too many details from my own recent experience that might be identifiable…. seconding this 100%. Any naive faith I had in the peer review process is long gone.
 
jnmaciuch said:
Without sharing too many details from my own recent experience that might be identifiable…. seconding this 100%. Any naive faith I had in the peer review process is long gone.
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Not something I have direct experience of but I think just reading the posts from any number of academics on (social network of your choice) with similar experiences gives a pretty good indication of people’s faith in the system,
 
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