rvallee
Senior Member (Voting Rights)
They're working on it. Probably having difficulty sourcing tissue, what with the complete lack of support from healthcare systems over this.
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Hypothesis The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome, 2023, Maureen R. Hanson
- Thread starter SNT Gatchaman
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I think there is a potential project in getting hold of gastrointestinal biopsies (or indeed any biopsies) done on people with ME/CFS and examining them carefully for viruses and abnormalities that were either missed or reported and largely ignored. Such biopsies are typically stored for a number of years before being destroyed, and I reckon quite a lot of people with ME/CFS will have had some done.
Kitty
Senior Member (Voting Rights)
If it's only viruses, couldn't stool be PCR tested? It wouldn't show tissue abnormalities, but it'd likely pick up the DNA of enteroviruses.
Guess it still needs money, though, and might be hard to justify unless there's a good indication it could tell us something we need to know.
I guess the issue is, are the viruses latent in cells, in a form where DNA/RNA is not being shed into easily accessible samples? I was reading something about the measles virus that can sit in brain cells for years and then cause encephalitis. It seemed to spread by causing cells to fuse together, so potentially the virus wasn't going outside cells. I haven't checked back to the paper, so I might not have that right, but stuff like that could be throwing a spanner in the works when testing is done.
But yes, although stool samples have been looked at, it seems that negative results for viral genetic material aren't necessarily conclusive. There's a lot to know still, so more testing sounds good.
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It's not clear to me that in this passage she's dismissing the idea that they could cause ME/CFS so much as the idea that these would be widespread causes, given the limited spread of these viral illnesses. She does seem to question whether the Dubbo study overall showed anything about ME/CFS.
Jonathan Edwards
Senior Member (Voting Rights)
But nobody has ever suggested that RRV would be a widespread cause. It is of interest because it appears to be followed by a prolonged fatiguing illness in a similar way to EBV or Q fever. The fact that RRV does not occur worldwide accounts for the fact that it only causes fatigue locally - obviously.
The only reason to raise RRV must be to suggest that maybe this wasn't really ME in Ross River or wherever. But this is a baseless argument, because if RRV was everywhere else it might well produce ME. Dubbo may be more about short term post-infective fatigue but the argument about RRV being local is spurious. Raising spurious arguments is not a good way to make a case for anything.
Kalliope
Senior Member (Voting Rights)
ScienceAlert Viral Origins of Chronic Fatigue Syndrome May Be Hiding in Plain Sight
Quote:
Hanson says before SARS-CoV-2 emerged, the ability of RNA viruses to persist in tissues for long periods "was largely ignored". But now, with the growing recognition of post-viral illnesses, researchers have looked anew at the link between viral infections and conditions such as ME/CFS.
In her latest review paper, Hanson outlines why one particular group of viruses called enteroviruses might be the "most likely culprit" of ME/CFS.
Quote:
Hanson says before SARS-CoV-2 emerged, the ability of RNA viruses to persist in tissues for long periods "was largely ignored". But now, with the growing recognition of post-viral illnesses, researchers have looked anew at the link between viral infections and conditions such as ME/CFS.
In her latest review paper, Hanson outlines why one particular group of viruses called enteroviruses might be the "most likely culprit" of ME/CFS.
I have no inside knowledge but there are opportunities to get significant funding to research "post viral illnesses" i.e. compared with ME/CFS - so there may be "incentives" to re-brand as a post viral illnesses.
Also we don't know the underlying pathology(s)/disease
mechanism(s) and there are views that an ME/CFS type illness has increased post covid.
So there may be upsides re getting funding to test the commonly held view that ME/CFS is a post infection illness.
EDIT - I may have added a comment, in a previous post, on this thread - in diseases like dementia progress has been made, i.e. to identify the underlying cause, via GWAS - studies like DecodeME. In (heterogeneous?) diseases like dementia it's take a number of (GWAS) studies to identify relevant genes i.e. not just one.
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rvallee
Senior Member (Voting Rights)
Not just measles. It wouldn't make much sense if that ability were truly unique to a tiny number of viruses either. It basically upends the traditional dogma, so that's very hard to work with. That dogma has been repeated like a mantra throughout the pandemic, so much that it feels more like a religious text than a scientific theory at times.
https://scitechdaily.com/chikunguny...d-to-vaccines-or-treatments/?expand_article=1
Sad to say, but tiny clumps of proteins with bits of code... still smarter than the whole medical profession. Evolution working for billions of years is very successful at what it does.
I really hope that it's some obscure immune dysfunction causing the illness (which GWAS might help find), because if it's really just a chronic infection we could have found 40 years ago by looking at tissue, I don't think I would be able to cope losing my entire life because of that.
I am furious about the fact that for at least half a century there has been a mainstream physiological test – CPET – that, in conjunction with a 2 day repeat test protocol, could have established beyond dispute there is something seriously wrong with our physiology, and in the way we have been consistently reporting.
Not to mention using the 2 day repeat test protocol with a whole range of other measures.
Yet here we are, still being assaulted from every side by the utterly unrepentant psychosomatic cult.
Something is fundamentally broken in the medical profession on this issue.
I'm not sure why our organizations haven't mobilitated to set up a large CPET study. I get it that it's invasive but if it's potentially the start of a revolution I'm pretty sure you could easily find 200-300 patients who are willing. That's the bare minimum required for doctors to start taking a study seriously.I am furious about the fact that for at least half a century there has been a mainstream physiological test – CPET – that, in conjunction with a 2 day repeat test protocol, could have established beyond dispute there is something seriously wrong with our physiology, and in the way we have been consistently reporting.
Not to mention using the 2 day repeat test protocol with a whole range of other measures.
Yet here we are, still being assaulted from every side by the utterly unrepentant psychosomatic cult.
Something is fundamentally broken in the medical profession on this issue.
Taken from https://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_test:
"In a 2018 presentation,[23] Ruud Vermeulen reported to have data on approximately 500 ME/CFS patients who performed the repeated CPET procedure. He stated the test on the second day did not show any difference in VO2max compared to the first day, as shown in the graphs he presented."
Given that the dutch group of researchers produced by far the most work on 2-day CPETs, this seems like a relevant factor. Here is the link to his presentation: .
Edit: Also wanted to mention that Ruud Vermeulen is a very controversial doctor or has even been somewhat discredited.
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Not surprising if it wasn't replicated, but we also shouldn't rely on a single team who might diagnose the wrong patients or mess something else up
Yes, one certainly shouldn't rely on a single team, especially considering that this doctor is very controversial or at least partially discredited. At the same time one may not forget that it was to a large degree him and his colleagues (van Campen and Visser, who aren't controversial at all) who showed the use of the 2-day CPET in the first place.
Van Campen and Visser nowadays seem more focussed on using transcranial Doppler sonography to determine OI problems. However, they did still publish 2-day CPET studies after Vermeulen presented his results, so who knows what's going on...
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Publishing studies to get their salary instead of clearly laying out the truth, that's what's going on. The incentive structure in medical research is broken, I'll keep saying it. It is absolutely ridiculous that after 40 years and so many studies published you still can never tell if something is real or not. You can of course assume it's not real and move on, which most people do, but what if it was real?
Got a link?
All of these studies have been published by van Campen and Visser after Vermeulen presented his results:
Yes. Infuriating. Not everyone can do CPET though.I am furious about the fact that for at least half a century there has been a mainstream physiological test – CPET – that, in conjunction with a 2 day repeat test protocol, could have established beyond dispute there is something seriously wrong with our physiology, and in the way we have been consistently reporting.
Not to mention using the 2 day repeat test protocol with a whole range of other measures.
Yet here we are, still being assaulted from every side by the utterly unrepentant psychosomatic cult.
Something is fundamentally broken in the medical profession on this issue.
CPET is available at colleges / unis studying sports science .
I contacted some UK ones a few years ago with a copy of a protocol ( think it was Workwell ) and they confirmed that they could set up the test .
Key was that they needed a GP/ doctor sign off .
Can't remember costs off top of head , but compared to some woo I remember thinking it was a pretty good deal.
I contacted some UK ones a few years ago with a copy of a protocol ( think it was Workwell ) and they confirmed that they could set up the test .
Key was that they needed a GP/ doctor sign off .
Can't remember costs off top of head , but compared to some woo I remember thinking it was a pretty good deal.