Would anyone be interested in trialing this for ME?

[Kevy B]

Hi,

Not sure if the ME research community browse this site, but I stumbled over this. Sadly it's behind a paywall, but you can get the gist from what you can read free, and it's about treating/reversing the effects of MS with transplanted immune cells:

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

I'm guessing it's probably a stem cell transplant.

I've always had a suspicion epstein-barr, or a herpes virus has been the culprit when it comes to my ME, as I came down with it a day after a drunken kiss, with the common flu-like symptoms that you never recover from, and it might well be I have some sort of immune system "fault" that means I can't cope with one of these viruses.

By the way, can I get tested for epstein-barr activation? The best my GP could offer me was to test me if I had EB antibodies, which I think is next to useless, considering most of the world has it.

Anyway, if I could find out if it's active/reactivating in my system, I'd be interested in taking part in a trial, if anyone's interested. And could maybe pay part of the costs for myself.

Would anyone else be interested in this?

 

[Mary]

@Kevy B - I think this is what is referred to in the above article: https://www.mssociety.org.uk/resear...nd-headlines-could-immunotherapy-ebv-treat-ms

Here are the results of the trial (from link I just posted):

Early data from the trial was presented by Atara Biotherapeutics at a conference last year. After 12 months on the trial, 5 people had worsening of their EDSS, 7 had an improvement, and 13 had no change.

Afraid not impressive results! And might have just been the normal progression of the disease.

 

[LINE]

https://www.msn.com/en-us/health/me...irus-linked-to-multiple-sclerosis/ar-AA1eY3ZP

Full article.
https://www.nature.com/articles/s41467-023-39770-1

 

[Kevy B]

@Kevy B - I think this is what is referred to in the above article: https://www.mssociety.org.uk/resear...nd-headlines-could-immunotherapy-ebv-treat-ms

Here are the results of the trial (from link I just posted):



Afraid not impressive results! And might have just been the normal progression of the disease.

Thanks for the replies, sorry for not getting back to now. Hmmm, little disappointing. Ho hum.

@LINE I could be wrong, but I think that's a study on mice.

Is there any good articles / posts on how to suppress EBV about? Foods, supplements, etc.? Thanks.

 

[Judee]

There was a mention somewhere on here of the combo of DMAE, PABA, and Inosine. https://forums.phoenixrising.me/threads/what-has-helped-you-the-most-with-ebv.89242/

I think that combo is supposed to do something with EBV but when I researched it online I only found one old article. I don't seem to do well on straight inosine. Initially it felt good but then my heart pain started so maybe it needs the others to do anything. ??

Please research anything you thing you want to try and look through the threads here for more feedback on any of this before buying anything. https://forums.phoenixrising.me/threads/difference-between-inosine-and-imunovir.39668/

Edit: Also I think the doctors that have prescribed Inosine also have their patients take it on a rotation...something like 4 days on and 3 days off and then an actually break from it at some point as well. ??