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

Nightsong

Nightsong

Senior Member (Voting Rights)
Abstract:
In this article, we have reviewed the literature on severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a clinical diagnosis in the absence of a diagnostic test. However, in research settings and disability disputes, 2-day cardiopulmonary exercise testing can be used to diagnose and document the abnormal response to exercise. Biomedical research into this disease has been scarce and underfunded for decades. Consequently, there are no effective treatments.

In its most severe form, it is more disabling than many other diseases, and patients are bedbound 24/7, dependent on carers, and spend their days in dark and quiet rooms. Even the soft sound of a human voice can lead to further deterioration. Some of the very severely ill suffer from life-threatening malnutrition and need to be tube-fed. The COVID-19 pandemic has led to a sharp increase in the number of patients with post-infectious diseases, and many of them fulfill ME/CFS criteria.

Dedicated, focused research using advanced medical technologies is needed to gain further understanding of the underlying disease mechanism. This will enable us to find effective pharmacological treatments and address the unmet medical needs of these very ill people.

Link | PDF (J. Clin. Med, January 2026)
 
I agree with the premise that the more severe end of ME/CFS needs more attention, but the abstract gets a couple of things wrong:
Nightsong said:
However, in research settings and disability disputes, 2-day cardiopulmonary exercise testing can be used to diagnose and document the abnormal response to exercise.
Click to expand...
This is not the case, and asserting it as fact might make the people that do not have an abnormal enough response on a 2-day CPET be excluded from benefits. This claim has come up often from Dutch advocates, but it isn’t limited to them.
Nightsong said:
In its most severe form, it is more disabling than many other diseases, and patients are bedbound 24/7, dependent on carers, and spend their days in dark and quiet rooms.
Click to expand...
It would be more accurate to say that ME/CFS can be on the more severe end of diseases, akin to e.g. very late stage neurodegenerative and autoimmune disease, or terminal cancer.
 
The case report on Paula (pseudonym) is horrifying. They do an excellent job at demonstrating the absurd logic used by those refusing to give her appropriate feeding support, e.g. that worrying about slightly lowered life expectancy from tubing-associated infections is irrelevant when the life expectancy without it is two months.

They also demonstrate clearly that ME/CFS isn’t anorexia because malnutritioned pwME/CFS want to gain weight, and those with anorexia don’t. Simply asking for feeding support should be clear proof that anorexia isn’t an appropriate diagnosis.

The article is very long, and gets into a lot of details about biology. I haven’t read that part, but I fear it will overstate what we know based on the statement about CPET. I hope I’m wrong. But if it’s the case, the inclusion would lower the value of the article as an argument to be used for appropriate feeding support because it would be easier to dismiss it as «they are imagining these things». Professionals should be expected to be able to see past that, but we know they don’t.
 
ryanc97 said:
From my understanding the hallmark of severe is the extreme sensory sensitivity, is it not? And feeding problems.
Click to expand...
I think severe can simply be conceptually defined as same disease, lower capacity to do things without triggering PEM.

There is no agreed upon threshold, the line between severe and moderate can go anywhere from bedridden to housebound.

Sensory problems are definetly more common in pwSevere ME. And I would say atleast in people with very severe ME are near universal.

Feeding problems are more common as well compared to “milder” forms of the illness. But I would say it’s still not particularly common until you get to the lower ends of very severe.
 
From my understanding the muscle weakness and fatigue become less of an "issue" because the sensory sensitivity means its difficult to leave the room in the first place.
 
Yeah, I’m not as bad as @Yann04 on the sensory side most of the time. But they put it very well. I can speak and be spoken to for short periods. And use audio as I find it easier than reading (which is impossible in long form). But I have a managed family/home environment and visitors who don’t get it and speak at me loudly do trigger PEM even when otherwise good. And at times I’ve just been much more sensitive.

From what I’ve heard a lot of us who are more severe have trouble keeping weight on and eating enough (I understand others have the opposite too of course). But the feeding problems seem as @Yann04 says to be more in v severe. At least that’s my understanding.

IMHO the environments are important. If I was in a hospital (as I have been, and it was awful there and after) or a care home that didn’t understand, things would go downhill and spiral pretty quickly. Becoming more sensitive along the way and struggling with eating more, that was my experience anyway. And it’s an aspect that many don’t appreciate I think. They can’t make us well but they absolutely can and do make us worse.
ryanc97 said:
From my understanding the muscle weakness and fatigue become less of an "issue" because the sensory sensitivity means its difficult to leave the room in the first place.
Click to expand...
I wouldn’t say that. When you’re struggling to sit or hold yourself upright to eat or go to the toilet or just holding or lifting a glass or cutlery or slice food and those things also cause weakness and fatigue. And it’s the same muscle weakness and fatigue of milder people I think. You can just have that and the sensory stuff.
 
I have read through much of the paper. The highlighting of the dangerous policy of denying feeding support is laudable but the rest of the paper is largely a rambling re-write of the uncritical 'biomedical' advocacy position that throws in a lot of stuff of poor quality. There is emphasis on CPET as a test for PEM which I think is misguided. A lot of very real problems are documented but there is a lot of unhelpful padding.
 
Utsikt said:
This is not the case, and asserting it as fact might make the people that do not have an abnormal enough response on a 2-day CPET be excluded from benefits. This claim has come up often from Dutch advocates, but it isn’t limited to them.
Click to expand...
That is a valid point, but since the Dutch context is mentioned. In the Netherlands the 2‑day CPET is hardly used anymore, if it is used at all. Apart from the scientific concerns, it is increasingly viewed as unethical. So at least in the Netherlands it will not become a requirement for receiving benefits.
 
Grigor said:
That is a valid point, but since the Dutch context is mentioned. In the Netherlands the 2‑day CPET is hardly used anymore, if it is used at all. Apart from the scientific concerns, it is increasingly viewed as unethical. So at least in the Netherlands it will not become a requirement for receiving benefits.
Click to expand...
Wasn’t there a recent court case from the Netherlands where it was used? I might have gotten the country wrong.
 
Utsikt said:
Wasn’t there a recent court case from the Netherlands where it was used? I might have gotten the country wrong.
Click to expand...
No, you are right. That court case was about Cardiozorg, their diagnostics, and their testing approach, but they only performed 2 day CPETs on a small minority of patients. It was as far as I know never a requirement for diagnosis or for receiving benefits.

Rob Wüst and sports physician Kasper Janssen are both strongly opposed to the 2 day CPET on ethical grounds. Kasper is the most prominent sports physician in the Netherlands when it comes to PEM and is closely involved with the association for sports medicine and their upcoming guidelines about PEM, LC and ME.

Given the growing pushback against the 2 day CPET, I do not see it becoming a requirement for disability assessments.
 
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.”
 
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.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom