56 Comments
Sep 6, 2022Liked by Gavin Giovannoni

I would have been willing to take part but I'm ineligible because I have PPMS.😪 I want you to know that I think this research is very important and and it's ok for you to use the word "cure". For our sanity we need a drop of hope

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Sep 6, 2022Liked by Gavin Giovannoni

Yes very interested in participating in such a trial. Maybe I’m kind of in one already? I’m on ocrelizumab and on acyclovir to prevent recurrence of oral herpes. Any evidence that this antiviral agent also impacts EBV?

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Sep 6, 2022·edited Sep 6, 2022Liked by Gavin Giovannoni

This trial needs to happen,

My ms surpisingly felt much better after Paxlovid - even better than before covid. Paxlovid is an antiviral. Hmmm….

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Sep 6, 2022Liked by Gavin Giovannoni

Professor Michael Pender has been doing EBV/MS research for decades and I wanted to be a test subject over two years ago but people who had already taken DMTs took my place(I had just been diagnosed). I’m taking theracumin and will add apigenin back in(has potential as a remyelinating agent(hyaluronidase inhibitor) and increasing NAD+ due to selectively inhibiting CD38 not just EBV antiviral). If my brain continues repairing I may not need to take a DMT again (on my 3rd year of cladribine). Any other ways to prevent lytic EBV that I’m missing?

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Sep 6, 2022Liked by Gavin Giovannoni

This is so interesting. Thank you. I would certainly be part of this trial. My daughter is at a high risk of developing familial MS. I would do anything to protect her and myself of course.

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Sep 6, 2022Liked by Gavin Giovannoni

I would participate if could from the US.

Feel very strongly that EBV caused my MS.

Thanks so much

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founding

Sandra, yes. The states are the…states. What can I say? Since I’m an old NEID, probably Prof G’s “smouldering MS,” I feel like I’ve been put out to pasture. Mooo!

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I am PPMS and interested! Thanks!

Can EBV be reactivated by vaccines or by other viruses like Covid?

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author

Yes, over 50% of people with long COVID have evidence of EBV reactivation. Some people think long COVID is due to EBV.

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Sep 6, 2022Liked by Gavin Giovannoni

"I have a dream" =inspiring bold words indeed!

I love your dream of "using just such an agent to treat MS, which will purge the body of EBV and cure MS." Yes, I would be interested in helping to make this dream work.

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Sep 6, 2022Liked by Gavin Giovannoni

I'd definitely be interested in participating in the study. I was diagnosed with having mononucleosis in my early 20s (allegedly two times separated by 12ish months, but more likely just one active "case" that lasted a long time). I was diagnosed with MS in 2014 (about 12ish years after mono).

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Sep 6, 2022Liked by Gavin Giovannoni

Yesssss!!!!!!!!!! Im on tysabri but I'd 100% take an antiviral as well!!!

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Sep 6, 2022Liked by Gavin Giovannoni

I would be interested!

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founding
Sep 6, 2022Liked by Gavin Giovannoni

As an "add-on" - what would be accepted as the treatment to which the anti-EBV agent is added? I'm on cladribine and would be keen to join but appreciate the cladribine might make things tricky (I know it does with other trials)

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Sep 6, 2022Liked by Gavin Giovannoni

I would be more than happy to be involved in this trial

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Sep 6, 2022Liked by Gavin Giovannoni

I would definitely be a participant in this research.

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Sep 6, 2022Liked by Gavin Giovannoni

I too would be part of this trial in a heartbeat. So thankful you are looking into this.

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Sep 6, 2022Liked by Gavin Giovannoni

I found the military analogy very useful. I'm interested in participating in such a trial.

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