Latent viruses as a cause of ME/CFS

T

Tom Hill

Established Member (Voting Rights)
I’m brand new to this forum and as a result I’ve only just heard of DecodeME. So the usual accompanying caveats and apologies apply, especially if these thoughts have been thoroughly covered.

I know I’m guilty of sidewalk theorizing here, but I’m really intrigued by the hypothesis (kept alive by the tentative results of the “Pridgen Protocol”) that the multi-systemic cascade of ME/CFS symptoms might be driven by the interactive effect of reactivated HSV and EBV working together. From what I can tell (from really thin scanning of the research on Google), HSV hides itself away in the nervous system, almost entirely in the brain (in the trigeminal ganglion), while EBV hides in the immune system (in B cells, I believe?).

I can’t help joining the dots between what we know about where those two viruses dig in and the findings of DecodeME, which points us strongly in two directions: the nervous system, specifically in the brain, and the immune system.

That ME/CFS would be driven by a complex interactive effect of two dormant/reactivated viruses living in two very different systems would, I imagine, make for a source of the disease that is unusually difficult to pin down through conventional research.

I have no medical research training, so I apologize for blundering around this delicate research landscape like a great Clydesdale busting into an immaculate Hobbit’s kitchen.

I’m just really curious about the theorizing coming out of DecodeMe and what the boffins think are the more promising possibilities.
 
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I suspect one of the problems of hidden viruses is that they need to be both dormant enough to be very difficult or virtually impossible to find at the same time as being active enough to trigger a significant disabling illness.

Would autopsy studies be able to clarify what viruses, if any, are lurking hidden in our brains?
 
Peter T said:
I suspect one of the problems of hidden viruses is that they need to be both dormant enough to be very difficult or virtually impossible to find at the same time as being active enough to trigger a significant disabling illness.
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This is the problem, really. Invisible viruses have always been the trendy answer to anything mysterious since the 1950s at least. Recent work by people like Lipkin, showing that you cannot find any extra virus in people with ME/CFS than others, makes me think it was about time that we gave up theorising about complicated interactions we can never find.

Building an explanation for ME/CFS requires tracing through a specific line of steps that could explain it. For hidden virus theories you have to assume that all these steps are invisible, It doesn't really bear up.
Tom Hill said:
I have no medical research training, so I apologize for blundering around this delicate research landscape like a great Clydesdale busting into an immaculate Hobbit’s kitchen.
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You shouldn't worry. The most important thing to realise is that we are all blundering about here. The research Twitterati writing reviews in tendy journals like to give the impression they are on the right track but we are still at the blind men and the elephant stage. The long thin bit is a nose, not a tail, the big flappy bits are ears, not wings. As one member here put it, whatever the answer is, it is almost certainly something nobody has thought of yet.

But we have some clues about specific pathways, from the genes, and the buspirone test maybe.
 
Jonathan Edwards said:
You shouldn't worry. The most important thing to realise is that we are all blundering about here. The research Twitterati writing reviews in tendy journals like to give the impression they are on the right track but we are still at the blind men and the elephant stage.
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Grazie. Glad to be grappling this elephant with such experienced people. The pro researchers here are enormously generous to entertain all the lay inquiries of us patients. It makes the long wait for results a great deal more bearable

Jonathan Edwards said:
Building an explanation for ME/CFS requires tracing through a specific line of steps that could explain it. For hidden virus theories you have to assume that all these steps are invisible, It doesn't really bear up.
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Could you explain this more? When you say “invisible” steps do you mean invisible to researchers hitherto? Or invisible to the immune system? Or etc?
 
Tom Hill said:
Could you explain this more? When you say “invisible” steps do you mean invisible to researchers hitherto? Or invisible to the immune system? Or etc?
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I am meaning invisible to researchers despite careful looking. And also invisibility to medical clinicians and histopathologists.

If a theory implicates a virus it needs to say exactly what the virus proteins are supposed to be doing to what cell and we can then check against what we know happens when those cells have that problem. A lot of biomedical scientists have little or no experience of how things affect real people when they come to see a doctor. If your theory implicates reduced oxygen transfer then it needs to fit with a century of experience of what reduced oxygen transfer looks like in the clinic. It isn' necessarily predictable just by theorising. The same applies for histology. Most scientists could not tell if a histology slide was normal or abnormal. If a virus is blamed for something there ought to be the relevant histological change.

For ME/CFS pretty much everything goin on is invisible to science. If it involves disturbances of nerve connectivity that is unsurprising since we don't know what to look for. If it involve viruses damaging cells we ought to have some evidence by now.
 
Jonathan Edwards said:
I am meaning invisible to researchers despite careful looking. And also invisibility to medical clinicians and histopathologists.

If a theory implicates a virus it needs to say exactly what the virus proteins are supposed to be doing to what cell and we can then check against what we know happens when those cells have that problem. A lot of biomedical scientists have little or no experience of how things affect real people when they come to see a doctor. If your theory implicates reduced oxygen transfer then it needs to fit with a century of experience of what reduced oxygen transfer looks like in the clinic. It isn' necessarily predictable just by theorising. The same applies for histology. Most scientists could not tell if a histology slide was normal or abnormal. If a virus is blamed for something there ought to be the relevant histological change.

For ME/CFS pretty much everything goin on is invisible to science. If it involves disturbances of nerve connectivity that is unsurprising since we don't know what to look for. If it involve viruses damaging cells we ought to have some evidence by now.
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Thanks v v much.

I’ve learnt so much just from being on this forum for a couple of days. Glad I had the courage to blurt out ignorant ideas and get guidance in response. Light years ahead of where I was last week in terms of my ability to navigate the literature as I try and make sense of what’s best for my own ME/CFS.
 
Tom Hill said:
Thanks v v much.

I’ve learnt so much just from being on this forum for a couple of days. Glad I had the courage to blurt out ignorant ideas and get guidance in response. Light years ahead of where I was last week in terms of my ability to navigate the literature as I try and make sense of what’s best for my own ME/CFS.
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You have made great strides in an area many cannot- you are “consciously incompetent” you are well aware you don’t know everything and open to learning.
A large amount of people are stuck being “unconsciously incompetent” and that can include researchers but also sadly patients who spend a lot of energy arguing a pet theory or creating complex protocols based on their own assumptions.

A bit of humanities there from a non-scientist
 
MrMagoo said:
You have made great strides in an area many cannot- you are “consciously incompetent” you are well aware you don’t know everything and open to learning.
A large amount of people are stuck being “unconsciously incompetent” and that can include researchers but also sadly patients who spend a lot of energy arguing a pet theory or creating complex protocols based on their own assumptions.

A bit of humanities there from a non-scientist
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Humanities guy here too <fist bump>
 
Ron Davis, professor of Biochemistry and Genetics at Stanford University School of Medicine, director of the Stanford Genome Technology Center in 2022:

"Now the other thing that we decided to do in this project is to test some of the ideas that patients have had, are they right or not. So I've heard a lot from patients that "Oh I keep getting viral infections . . .I get them all the time, it's really my real problem . . . I'm very susceptible to viral infections". And I ask them what virus do you think you're getting? "Oh I'm sure it's HHv7 or it's another herpes virus and that's what caused my illness in the first place". So we decided to actually test this and we had to develop a technology to really do it and to do what I thought was correct.

28:24 The results of that is basically there aren't virus infections that are different from healthy controls. A few people do have them but healthy controls have more in this small study, so it makes me suspicious that in fact they don't have viral infections. They have something else going on that feels like a virus infection and a lot of inflammation things things will make you feel like that. Most of these viruses probably, by themselves, don't really do anything by themselves. It's not to their advantage to give a signal to the body that they're there. The body is the one that does the signaling that there's something wrong. And I think if you have that signal like inflammation it may feel like a viral infection. The only reason I'm stressing that point is that if it's most likely you don't have a viral infection you shouldn't be taking antivirals probably, because they're probably not that healthy for you. And the reason they're probably not that healthy is that the antivirals generally target the synthesis of the DNA from the virus and it works because it's a very primitive"
 
Tom Hill said:
I have no medical research training, so I apologize for blundering around this delicate research landscape like a great Clydesdale busting into an immaculate Hobbit’s kitchen.
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Questions are the basis of science. Someone might post a question that they worry appears stupid, but it might be just the thing to prompt someone into really thinking about it and come up with a new insight. Even a question that "everyone knows the answer to" might be useful, since "everybody knows" a lot of stuff that's wrong.

I think it's particularly useful to ask questions about the latest popular theories. It's better that someone points out flaws than having everyone think it's a solid, unquestionable theory. Failing to question a theory is supporting it (without evidence).

The two dormant viruses theory would be very hard to prove wrong, since the proponents can always come up with yet another reason for why/how the viruses--and their effects--are hiding. You may as well make it a 348746-dormant-virus combination theory (and throw in quantum vibrations and numerology and astrology as well). What the theory lacks is supporting evidence.

Jonathan Edwards said:
If it involves disturbances of nerve connectivity that is unsurprising since we don't know what to look for.
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How much mystery is left in detecting viral presence and effects compared to detecting abnormalities in brain function? I expect the latter remains deep mystery, but I don't know how likely it is to see amazing new discoveries in viral studies.
 
Mij said:
"They have something else going on that feels like a virus infection and a lot of inflammation things things will make you feel like that."
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Yes, my first experience of ME was feeling exactly like I was coming down with a flu ... except that the symptoms were gone the next day, which is not the pattern for a viral infection. We have symptoms that are produced by internal mechanisms that can be triggered by viral infections, but that doesn't mean that they're the only possible trigger.
 
I expect the dormant virus theories fail if you consider all the observable responses of PWME: triggering symptoms from foods, chatting, getting PEM from less than a minute of one form of exertion, but not hours of a different and more strenuous exertion, and whatever else that doesn't fit viral responses.
 
Creekside said:
How much mystery is left in detecting viral presence and effects compared to detecting abnormalities in brain function? I expect the latter remains deep mystery, but I don't know how likely it is to see amazing new discoveries in viral studies.
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I am not quite sure of the crux of this question for you? But I will try to answer.

Detecting viral presence at a level that is clinically significant seems reasonably well worked out. HIV may have taken a little time to identify perhaps because it invades and kills off a small population of cells (CD4 T cells). But the huge investment in viruses that came with HIV has probably meant that there isn't a lot of mystery left in terms of finding them if they are causing clinical problems.

We are also reasonably good at tracking neural disease mechanisms when things are more peripheral. We can predict a lot about peripheral motor and sensory nerve misbehaviour and also track that in to brain structures when the problem affects a modality generally. For instance we can make useful predictions relating to cortical visual loss and the way it differs from retinal visual loss.

But when it comes to neural activities that involve computations we are almost completely stuck because nobody knows the mathematics of those computations even if very basic terms. About the best we can do is the experiment of Hubel and Wiesel which showed that some visual cortical cells can compute the presence of a line at a particular angle moving across their field. We still don't know how they do that but at least we know there are cells that do do that. We now have good datat indicating that brains analyse faces rather the way computers do - by checking the ratios of distances like lip to nose and between eyes. But we have no idea how the cells do that.

Basically, it is less surprising that a computer working on an operating system you have never heard of will crash for reasons you cannot work out than it is for an electric lawn mower to crash without a competent technician knowing what is wrong.

The real shock in terms of infectious agents came with prions, which appear to be infectious molecules rather than organisms. We might see something like that again, but that does not really apply to theories of latency of viruses we have knwn about for years.
 
SugarSquared said:
Just throwing a question out there, but are there any illnesses caused by latent viruses? It would be useful to be able to compare.
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There are several caused by viruses that have been latent for long periods but start replicating again. The most obvious is shingles (the chickenpox virus). Or cold sores from HSV1, lying latent in epithelium and then replicating to produce sores. Another is JC virus leucoencephalopathy, which occurs if you are immunosuppressed.
 
Creekside said:
Yes, my first experience of ME was feeling exactly like I was coming down with a flu ... except that the symptoms were gone the next day, which is not the pattern for a viral infection. We have symptoms that are produced by internal mechanisms that can be triggered by viral infections, but that doesn't mean that they're the only possible trigger.
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I get “fake flu” PEM, I have it now. At times I indulge myself with a Covid test, it’s always negative. I never get to the “fully unwell” point, or temperature. I had come to learn over the years that my body thinks it’s reacting to a virus (and the temperature and sleepiness etc of the flu is all your body trying to kill the virus isn’t it? a virus doesn’t want you to get hot and kill it off)

Not sure I agree with Ron Davis saying it’s “inflammation” though. Is there a basis for that assertion? Is it specifically inflammation, or just general dysfunction?
 
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