Maureen Hanson talk at OMF Symposium 2019

They did a couple of brain biopsies in the UK just when CFS was invented and they found vp1 which is actual pieces of enterovirus. They also found it in muscle biopsies.

Left to languish like so much else.

 

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.

 

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?

 

Ss-31 shouldnt be very expensive.Do we have a dosage for this?I dont think there is any data on that.

 

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.

 

There seems to be an unwritten convention that you don’t talk about the ‘not nice’ parts of life.
I do post about ME on an ordinary fb page but ‘ likes’ are few or nonexistent.

 

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.

 

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.

 

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.

 

I do not believe that the similarities between me/cfs and post polio syndrome are arbitrary.

 

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?

 

I felt like my infectious agent was just a common cold.

 

See here https://www.s4me.info/threads/3rd-a...ty-sponsored-by-omf-7th-sept-2019.9297/page-3

 

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.