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Interesting research. I'm keen to be a "trialer".

Kevy B

Kevy B

Messages
49
Hi,

Long term ME sufferer, here. Browsed the forums, off and on for a good long while.

So I was interested in this research, not sure whether to post this in the general section, or in the medical research section:

https://www.newscientist.com/articl...d-immune-cells-that-fight-epstein-barr-virus/

It's for MS, but I think it's very relevant to those who suspect EBV is behind their ME. I've personally long suspected EBV is behind my ME, as I came down with my ME a day after a slightly drunken kiss, and I believe EBV's highly associated with transmission via the said deed. If so, I'm guessing my immune system might have some sort of weakness/quirk that handle's EBV badly.

Anyone know if anyone's considering trials for ME sufferers? I'd be interested in being a candidate. I assume by the sounds of it, that it's probably involves a bone-marrow transplant, but I'm ok with the risks, and I'm game.

One problem is, though, is I've never had any testing to say EBV's involved. I believe some people have had testing done, but I've never been offered anything (I'm in the UK, which is of course, infamously restrictive when it comes to what ME sufferers are allowed when it comes to testing), and I think there's potentially another Herpes virus that could be linked to ME that could be contracted via kissing?

Anyone know how I could get tested for EBV activity/activation and whether anything would definitely show, if EBV's the villain in my case?

Thanks.
 
W

Wishful

Senior Member
Messages
5,750
Location
Alberta
There's a slight problem: EBV may have triggered your ME, but it may not be sustaining it. Therefore eradicating any trace of EBV may not make your ME go away. Some theories have inactive viruses causing problems, and inactive ones are harder to destroy. There's no guarantee that antiviral treatments won't work on you, but there's also no guarantee that they will. Deciding what the probabilities are is just wild guesswork.
 
Kevy B

Kevy B

Messages
49
Well, I'd be willing to be a guinea pig to find out, as it does look like the villain in at least some MS sufferers. To be honest, I've suffered more than one decade, and it's getting to the point that my health's going down hill further, so I'm getting that I'd be willing to try anything if it's worth a shot.

Any idea how to get tested for active EBV?
 
Kevy B

Kevy B

Messages
49
Looking at the research forum, other herpes viruses such as HHV-6 could also be the culprit, so obviously I need to find if anything shows up as active, first. Would be interesting to see if they can do something similar for viruses such as HHV-6. Likely, I would have thought/hope.

Interestingly, I never had a cold sore, even though I've probably kissed enough people to be likely to have contracted and cold sores being very common. Relevant to anything? Do other other ME sufferers get cold sores?
 
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G

Garz

Senior Member
Messages
359
the research linking EBV with MS is interesting but incomplete in my view

they researchers did good job of showing that MS does not develop without prior infection with EBV - in 99% of cases

the problem is something like 95% of the population have had EBV and in common with all herpes viruses - this means they will always have some level of EBV inside them for the rest of thier lives.

so what has not been answered is - why don't the rest of the 95% of the population who have had and still have EBV in them, develop MS also.

meanwhile other researchers have found other pathogens in the brains of MS patients. notably borrelia.

so it could be for instance that there is a mixed modality infection at the root cause of MS - for example EBV on its own does not cause the issue - but EBV in the presence of borrelia does - especially in the presence of other environmental or genetic predisposing factors.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,388
Kevy B said:
Interestingly, I never had a cold sore, even though I've probably kissed enough people to be likely to have contracted and cold sores being very common. Relevant to anything? Do other other ME sufferers get cold sores?
Click to expand...

I have never had one, either.

I dated somebody who got them quite frequently (he ate alot of sugar I recall)
 
BrightCandle

BrightCandle

Senior Member
Messages
1,155
I have had and do get cold sores occasionally. I know the person I caught EBV off too, I got it when I was 17 from a kiss.

Lets ignore the nonsense of immunity debt that seems to have taken over talking heads minds, there is no such thing! We are in the middle of a pandemic of Covid19 a lot of people are getting hit very severely with RSV, Flu, Scarlet fever and a bunch of respiratory conditions. Covid19 has a lot of "immune escape", which is presumably a combination of hiding but also immune suppression and there is plenty of signs of that in the blood of survivors with compromised T and B cell count as well as misbehaving monocytes and low Natural Killers.

A lot of viruses presumably use immune suppression mechanisms to propagate and succeed and something as widely spread as EBV very likely has a lot of that. IIRC it directly infects the T cells and uses it to spread around the body. So its perfectly possible that the systems that EBV misregulates to promote its own survival aid other viruses or bacteria and allows them to get a foot hold. It could be the case without EBV whatever the real cause is would not stand a chance, our immune systems have evolved alongside these things for millions of years so its capable of dealing with a variety of combinations but it has flaws. We are seeing that with Covid19 where we have mass outbreaks of severe cases of other conditions in people who have been immune compromised by Covid19 and now they are catching all sorts.
 
Kevy B

Kevy B

Messages
49
Rufous McKinney said:
This is so lame, the idea that if you didn't get something three years ago because you stayed home, now your catching everything.
Click to expand...

Well, they have to come up with some lame theory to explain why so many kids are coming down with Strep, and it's not because they let Covid run free and potientially damaged their immunity. They have to double down than take responsibility for terrible decisions..
 
Kevy B

Kevy B

Messages
49
Rufous McKinney said:
I have never had one, either.

I dated somebody who got them quite frequently (he ate alot of sugar I recall)
Click to expand...

So judging by replies, some do and some don't. Would be interesting to know if it varies in % any way from the general population. You'd think with our iffy immune systems we'd be at risk of being in cold sore hell, with constant outbreaks.

Unlikely speculation, maybe, but it would be ironic if some MEs were caused by our immune system's over-zealous desire to prevent us getting cold sores.
 
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