-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Maureen Hanson talk at OMF Symposium 2019
Mij
Senior Member (Voting Rights)
Ron Davis:
25:47 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 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
25:47 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 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
In the end, he says very little here, at least definitively. All he has done is open up a whole batch of hypotheticals. Let's see: 1)Could be that the viruses found in healthy controls and the cohort do not cause symptoms in the former, but do in the latter; 2) They are missing the correct virus; 3) Sometimes it's not a virus - maybe it's a bacteria or a parasite; 4) Maybe it's a remnant of a bug that's causing an immune reaction....I could go on, I suppose.
The idea is that it is our immune reaction that makes us sick is nothing new. He says it: "The body is the one that does the signalling that there is something wrong." I just find it difficult to believe that immune response is done by something paranormal. I also prefer to trust my body recognizes something that doesn't belong. Perhaps Hanson may as well.
Last edited:
Forbin
Senior Member (Voting Rights)
As @andypants said, the video of Dr. Hanson's talk makes it clear that she's making a tongue-in-cheek suggestion that ME/CFS must be caused by a "genius virus" because the illness it produces is not taken seriously, thus ensuring the survival of the "virus" due to the lack of interest in investigating it (see Keyser Söze). By contrast, polio and HIV are "dunce" viruses (her words) because they do such obvious physical damage that they attract great scientific interest and funding which leads to such viruses eventually being brought under control in the human population. Smallpox would be a "dunce virus" because its lethality led it to be extinguished in the human population by 1978.
It's sort of a joke about how ME/CFS' "benign" nature (Ramsay's term for "won't kill you") is a sort of "survival strategy" of the causative agent. It's not to be taken seriously except as a metaphor for why ME/CFS research is so badly underfunded. [That's how I take it, at least.]
Although she uses the term "virus," I get the impression that she's using that as an umbrella term for the causative agent(s). She gives the example of many people eating at the same restaurant and picking something up. In a small town, with one or two doctors, this would be recognized as an "outbreak." In large city, every person in the restaurant could have a different doctor, and none of those physicians would be likely to make the connection.
It's sort of a joke about how ME/CFS' "benign" nature (Ramsay's term for "won't kill you") is a sort of "survival strategy" of the causative agent. It's not to be taken seriously except as a metaphor for why ME/CFS research is so badly underfunded. [That's how I take it, at least.]
Although she uses the term "virus," I get the impression that she's using that as an umbrella term for the causative agent(s). She gives the example of many people eating at the same restaurant and picking something up. In a small town, with one or two doctors, this would be recognized as an "outbreak." In large city, every person in the restaurant could have a different doctor, and none of those physicians would be likely to make the connection.
Last edited:
Peter
Senior Member (Voting Rights)
This resonates well with my personal experience and probably for a possible subgroup of patients. It can be quite hard to sort out what is what, and you can easily be fooled. Some years ago I also thought that I was picking up whatever got around of viruses. But by time and experience, I assume that is not the case. So my personal layman take on this, is that what is happening is some kind of immune response to exertion or some kind of inflammation that goes on and of.
If this is a result of the immune system, I guess you could argue that it possibly is overactive and not the opposite. If that is of any good I don’t know, probably not over a long period, but isolated a overactive immune system may be beneficial fighting “other ordinary things”? The thing is that I very seldom pick up “others things”. But if that is the case once in a while, you can bet it will take a long time to get rid of and it will also amplify ME-symptoms, - cause immune system already working overtime and/or inflammation will not manage fighting off one more thing very well.
Mij
Senior Member (Voting Rights)
One thing I am certain of is that I will never take another immune-modulating drug ever again. I went from feeling 90% improved to 30% in 2001 from taking immune modulators. The drug reactivated HHV6 and EBV and I relapsed terribly, my CD4 and CD8 t cells plumited. I was left with autonomic issues after that.
Of course, if it's an active pathogen of any sort, an immune modulator does seem somewhat potentially counter-intuitive. This is the gamble many of those who push the post-treatment Lyme Syndrome theory and espouse things like Plaquenil.
Perhaps there is merit to quieting the immune response. But suppressing symptoms and thereby re-activating a sleeping dog, or allowing it to spread, may be the byproduct, hence the gamble.
Mij
Senior Member (Voting Rights)
I took Imunovir. The virologist I saw did a small study with Dr.Hyde years ago on ME pts. I asked him how they felt after the trial and he told me they felt 'less fatigued'. Well, it put me into a terrible relapse.
Now this is depressing. It suggests (to me, at least) they don't know how to cure whatever it is, and there is nothing on the horizon.
When I first tested positive for Babesia, I was lucky enough to talk with one of the few experts in Babesiosis. When I pressed him about treatment, he countered with unless I demonstrated classic Babesiiosis symptoms, not to treat. I asked why, and he said not to prod sleeping dogs that we may not be able to heel. He suggested I would likely have Babesia in me for the rest of my life.
So, the idea that you don't mess with what you cannot fix, and just try to hold it in abeyance, and maybe throw some drugs at your symptoms, is not limited to potential ME bugs.
Mithriel
Senior Member (Voting Rights)
The first thing that comes to my mind is that The US researchers of CFS ignored the years of expertise and research of the UK experts in ME. After about 20 years they rediscovered the fact that it is not fatigue it is about the abnormal response to exertion.
Now they seem to finally be talking about viruses. Thirty years and we are finally back where we were in 1990!
Whatever the outcome, it is time we had some research on the role of viruses and other parasites in ME. It was described from epidemics and no theory can ignore that.
The idea that viruses can persist in the body by evading the immune system is not controversial. Enteroviruses have a nifty little trick where they do not replicate true so the immune system does not recognise them. When they then invade another cell there are viruses which have all the bits of the genome which can then work again.
They have been found to form exosomes which attach to neurons so they travel through the blood without the immune system finding them.
Other viruses take over a cell, use the machinery to make copies then burst the cell and invade some more. Enteroviruses do not burst the cell. This is a problem because the body will replace dead cells but it does not recognise one that is full of virus so instead of a healthy system you can have one that barely works.
A lot of work has been done on enteroviral cardiomyopathy. Also enteroviruses are so closely related, Polio, coxsackie, Echo etc. that labs don not distinguish them individually. It is an accident of history that they have different names and not numbers like E.coli.
Then we know that herpes viruses persist in the body. That is why chicken pox at 7 can give you shingles at 70.
Much of what we think of as an infection is actually the immune response (flu like) you get subclinical infections where you do not realise you are ill. But the virus has settled in disrupting your biology and evading the immune system. When a sudden strain is put on the body it could push it over the edge into ME.
We are at war with parasites, they find all sorts of ways to use our resources for themselves. A virus which can live within us for years without killing us is a successful virus.
The characteristic of ME is that it causes lots of things to go a little bit wrong. We do not have large ulcers or spots or kidney failure, in fact a virus happily settled in within us is as good an explanation as any.
Edited to say, it took them years to find the cause of poliomyelitis because the polio virus causes a flu like illness which comes and goes. The disease polio is a rare abnormal response to that infection, like measles encephalitis.
If ME is caused by a virus it is by a common one not anything exotic.
Now they seem to finally be talking about viruses. Thirty years and we are finally back where we were in 1990!
Whatever the outcome, it is time we had some research on the role of viruses and other parasites in ME. It was described from epidemics and no theory can ignore that.
The idea that viruses can persist in the body by evading the immune system is not controversial. Enteroviruses have a nifty little trick where they do not replicate true so the immune system does not recognise them. When they then invade another cell there are viruses which have all the bits of the genome which can then work again.
They have been found to form exosomes which attach to neurons so they travel through the blood without the immune system finding them.
Other viruses take over a cell, use the machinery to make copies then burst the cell and invade some more. Enteroviruses do not burst the cell. This is a problem because the body will replace dead cells but it does not recognise one that is full of virus so instead of a healthy system you can have one that barely works.
A lot of work has been done on enteroviral cardiomyopathy. Also enteroviruses are so closely related, Polio, coxsackie, Echo etc. that labs don not distinguish them individually. It is an accident of history that they have different names and not numbers like E.coli.
Then we know that herpes viruses persist in the body. That is why chicken pox at 7 can give you shingles at 70.
Much of what we think of as an infection is actually the immune response (flu like) you get subclinical infections where you do not realise you are ill. But the virus has settled in disrupting your biology and evading the immune system. When a sudden strain is put on the body it could push it over the edge into ME.
We are at war with parasites, they find all sorts of ways to use our resources for themselves. A virus which can live within us for years without killing us is a successful virus.
The characteristic of ME is that it causes lots of things to go a little bit wrong. We do not have large ulcers or spots or kidney failure, in fact a virus happily settled in within us is as good an explanation as any.
Edited to say, it took them years to find the cause of poliomyelitis because the polio virus causes a flu like illness which comes and goes. The disease polio is a rare abnormal response to that infection, like measles encephalitis.
If ME is caused by a virus it is by a common one not anything exotic.
+1. If such viruses do indeed infect the brain or CNS and do not cause cell lysis then it is no surprise Ron Davis et al. havent found any evidence of viruses in the blood. The only way to confirm this 100% is with a brain biopsy. It would be very hard to execute such a study though.