Maureen Hanson talk at OMF Symposium 2019

duncan said:
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.
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There are things on the horizon. The might have already found the "cure" in form of copaxone or SS-31, if those drugs provide systemic effects in the body similar to what was observed in the nanoneedle, i.e., they made ME/CFS cells behave normal. The depressing thing is that even if one of these drugs were "the cure", the next obstacles are getting the drug approved, the side effects, availability and cost. Copaxone is both expensive, has lots of side effects and requires injection form of administration. From what I heard, SS-31 should not have much side effects, but has a very high cost. By the way, I wonder what happened to suramin, they went very quiet on that front.
 
andypants said:
The virus or whatever is a genius for successfully making us very ill while convincing everyone one else that it doesn’t exist, including either disappearing after triggering or hiding where no one can find it.
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But how is it transmitted? Viruses need to be passed from host to host. Why was it only me who who got it, but none of the other 21 people I was cooped up with in a classroom all day at the time? (still healthy, lucky souls, seen on Facebook having lovely lives).

Why did none of my friends catch this virus and their children, or my husband, or my children?

Not from me or from whoever I caught it from? Polio spreads like wildfire, as does the measles. What's the vector of transmission of THIS alleged virus?
 
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:laugh: That is so SO true! I loathe Facebook #soblessed bollocks ;)

But seriously, I think I'll get in touch with them and see if they're all actually OK, and not afflicted with anything like this.
 
Squeezy said:
But how is it transmitted? Viruses need to be passed from host to host. Why was it only me who who got it, but none of the other 21 people I was cooped up with in a classroom all day at the time? (still healthy, lucky souls, seen on Facebook having lovely lives).

Why did none of my friends catch this virus and their children, or my husband, or my children?

Not from me or from whoever I caught it from? Polio spreads like wildfire, as does the measles. What's the vector of transmission of THIS alleged virus?
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See @Forbin s post #28 - I don't think she meant it literally :) we still have the probability of predisposing factors and/or some sort of double or triple hit. And of course we still have no idea why polio led to paralysis in some people but not nearly all. Could be a similar situation, just much more visibly so.
 
Squeezy said:
Not from me or from whoever I caught it from? Polio spreads like wildfire, as does the measles. What's the vector of transmission of THIS alleged virus?
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I think you would need to look up the details for polio. Some time ago I was looking at a paper on a polio outbreak in Edinburgh. I think it was about 1959. It suggested that for every symptomatic case of polio there were something like 140 people showing exposure to the virus but remaining asymptomatic. It seemed that there was much that was not understood.
 
Squeezy said:
But how is it transmitted? Viruses need to be passed from host to host. Why was it only me who who got it, but none of the other 21 people I was cooped up with in a classroom all day at the time? (still healthy, lucky souls, seen on Facebook having lovely lives).

Why did none of my friends catch this virus and their children, or my husband, or my children?

Not from me or from whoever I caught it from? Polio spreads like wildfire, as does the measles. What's the vector of transmission of THIS alleged virus?
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They probably all got it at the same time. Coxsackie B gives you "summer flu". As usual with infections once you have had it your immune system remembers so that when you encounter the virus again it can fight it of so quickly you never realise it was there.

Poliomyelitis, the disease, was more likely in older children who had never encountered it before. Many diseases are worse the older you are when you get them. Most people got a mild flu like illness or a subclinical one. Others were hospitalised and everyone waited to see what would happen. Football players were more likely to have leg problems, tennis players arm ones. Some lost the ability to breather unaided, others died.

Some people did not get any of these outcomes but instead developed what we call ME but which they referred to as abortive poliomyelitis. They then changed the name to distinguish it from polio, calling it benign, as deaths were rare, myalgic as there was extreme pain in the muscles, encephalo, as there were neurological signs and then myelitis for the similarity of inflammation to polio; ME.

You may not have experienced the virus before or it was slightly changed from ones you had in the past so you got ill.

In people who got ME, for some reason the virus was able to get deep in the body before the immune system fought it of.

That could be because you took a separate infection at the same time or your system was low for some other reason.

Measles causes an encephalitis in some people as does herpes when the virus gets into the brain but this is not common and does not mean that people who don't get it have never had measles or herpes.

From forums, many people have got ME at the same time as family and coworkers. My uncle became ill at the same time as me when we were the only ones in my family who swam in the sea at Blackpool one burning hot summer in 1968. I have had Me ever since while he took recurring kidney infections which burnt out after about 20 years.
 
Sarah94 said:
Why does Hanson now think that it's a virus? I thought the researchers had moved away from that idea.
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I can't remember everything that's been said on this thread, but I remember there has been some confusion about this.

I have just watched the talk. Here's my take on what she said, which was in the context of why ME has such low funding:

Diseases caused or triggered by infections get two different reactions from the US government and NIH in terms of funding:

1. She used the example of polio, zika and HIV as foolish viruses because they cause visibly dramatic effects on sufferers, so funding gets pumped in in billions of dollars to try to solve them quickly, and hopefully before they become endemic.

2. ME has also caused outbreaks, but the results on patients were much less obviously and rapidly dramatic, so very little notice was taken by funding agencies, and whatever infectious agent(s) are involved stay under the radar and become endemic. I forget the word she used for this - was it stealth virus? [Edit: correction - it was genius virus].

There have been, according to her information, fewer outbreaks since the 1980's compared with recorded outbreaks around the world from the 1930's to 1980's, which she suggests means whatever the infectious agent is, it has become endemic.
............

Then there was the separate question of whether the infectious agent is:
- a 'hit and run' infection, that infects the individual temporarily, but leaves havoc in its wake,
- or a chronic infection

To that question she said the current thinking among most researchers is that it is of the 'hit and run' type.

So the idea of it being a clever or stealth genius virus was not about it staying hidden in the individual, but about it staying hidden in the community as an endemic virus.

Do correct me if I've got the story wrong!
 
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Trish said:
I can't remember everything that's been said on this thread, but I remember there has been some confusion about this.

I have just watched the talk. Here's my take on what she said, which was in the context of why ME has such low funding:

Diseases caused or triggered by infections get two different reactions from the US government and NIH in terms of funding:

1. She used the example of polio, zika and HIV as foolish viruses because they cause visibly dramatic effects on sufferers, so funding gets pumped in in billions of dollars to try to solve them quickly, and hopefully before they become endemic.

2. ME has also caused outbreaks, but the results on patients were much less obviously and rapidly dramatic, so very little notice was taken by funding agencies, and whatever infectious agent(s) are involved stay under the radar and become endemic. I forget the word she used for this - was it stealth virus?

There have been, according to her information, fewer outbreaks since the 1980's compared with recorded outbreaks around the world from the 1930's to 1980's, which she suggests means whatever the infectious agent is, it has become endemic.
............

Then there was the separate question of whether the infectious agent is:
- a 'hit and run' infection, that infects the individual temporarily, but leaves havoc in its wake,
- or a chronic infection

To that question she said the current thinking among most researchers is that it is of the 'hit and run' type.

So the idea of it being a clever or stealth virus was not about it staying hidden in the individual, but about it staying hidden in the community as an endemic virus.

Do correct me if I've got the story wrong!
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Thanks Trish.

So it appears that Hilary Johnson was misrepresenting Hanson's words on Twitter.

Does Hanson think it's one infectious agent, though? Doesn't it seem more likely that ME is something that can develop after a variety of different infections?
 
Sarah94 said:
Does Hanson think it's one infectious agent, though? Doesn't it seem more likely that ME is something that can develop after a variety of different infections?
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I don't think she said it was necessarily the same infectious agent every time, more that the lasting effect on the patients was similar enough for it to be the same chronic condition resulting from it.
 
I think the bits Hilary Johnson quotes are saying much the same as my interpretation, except that she emphasises more the idea that the outbreaks are likely to have been caused by the same infectious agent that became endemic (hence stealth genius) .

I don't think that precludes other infectious agents triggering the same long term disruption in patients that manifests as ME symptoms. That question was not something she addressed, I don't think. The context of that part of her talk was funding, not virology.

The point I was trying to highlight was that the bit about stealth genius viruses was about their ability to become endemic in the community, and stay under the radar of funding agencies, not about whether they stay in an individual after the initial infection.
 
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Trish said:
The point I was trying to highlight was that the bit about stealth viruses was about their ability to become endemic in the community, and stay under the radar of funding agencies, not about whether they stay in an individual after the initial infection.
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I think that I brought in the subject of stealth viruses, which was the name given by John Martin to his idea, by enquiring whether they were similar concepts. I think the term used by Hanson was thought to be "genius" viruses, though there seemed to be some doubt as to what was actually said.
 
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