57 Comments
Jun 13, 2022Liked by Gavin Giovannoni

It is estimated that EBV causes some 1 per cent of cancers worldwide. EBV is also thought to trigger other autoimmune diseases eg rheumatoid arthritis, type 1 diabetes and lupus. Couldn’t the proposed work on EBV and MS (vaccines / anti-virals) cover all the diseases associated with EBV ie different researchers / funders work together to see if addressing EBV can prevent / stop MS, lupus, the various cancers linked to EBV? Are there lessons to learn from the very successful HPV programme (offered to U.K. children who are 13 / 14).

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Jun 13, 2022Liked by Gavin Giovannoni

Thank you for this informative and inspiring blog. So frustrating that others won’t support the idea/fund research, what more can be done to overcome this do you think? Sounds like pwms need to do some campaigning and be more vociferous!

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Jun 14, 2022Liked by Gavin Giovannoni

Can I please ask two questions. Firstly I am pretty sure I had EBV a few years prior to my M.S diagnosis( my G.P. said it was a nasty virus!! ) would it be possible 20 years later to find out if it was EBV. secondly I would like to ask as there are so many of us with M.S.who agree with your findings could we not express our views alongside your own for some kind of research/trials into following this up As we are all aware M.S is thankfully the backbone of your research so would some kind of petition signed by us all make things more successful for you moving forward I as I.m sure many others would willingly lend my time and voice to this

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Jun 14, 2022Liked by Gavin Giovannoni

A very interesting and clear explanation of MS and EBV. Are all newborn babies EBV negative? If so, does this mean that the virus cannot be passed from mother to baby in the womb? In my family there are three direct generations that have had MS, my maternal grandmother (died of it aged 29), my mother (died with it aged 78), my brother (died of it aged 26) and my sister is living with it aged 74. My father, myself and my half-sister (maternal) haven't had MS.

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Jun 13, 2022Liked by Gavin Giovannoni

Great primer! I had been in the "okay EBV causes MS so what now?" boat but this really explains the ecosystem.

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Jun 13, 2022Liked by Gavin Giovannoni

Very informative, thank you, and I find the vlogs easier to learn from than reading. Thanks again.

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Jun 13, 2022Liked by Gavin Giovannoni

Of course EBV and also Covid 19 causes and triggers MS

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Thanks for this video. So exciting that ebv hypothesis gathering traction

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Jun 13, 2022Liked by Gavin Giovannoni

Just saying that all my ms symptoms felt better after taking the antiviral paxlovid. Was it a function of more rest or - per your theory - was an antiviral treating the root cause? Perhaps worth looking into?

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Jun 13, 2022Liked by Gavin Giovannoni

As current anti-CD20 treatments blunt immune responses to CoVID-19 vaccines how will a theraputic anti-EBV vaccine work? As zidovudine has been proven to have an anti-EBV effect, why are there no studies looking at zidovudine and MS? I don’t understand why the drug companies are not supporting this research which could yield new licences and make them a fortune?

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Jun 13, 2022Liked by Gavin Giovannoni

Also last question I promise!

LDN. I've got a prescription to take it to assist in ms symptoms

Both my neurologist and another neurologist don't use it. They mentioned it's safe with Tysabri so gave me the all clear as did my Dr at a low dose up to 4.5mg

I've read there might be a possibility that LDN can re activate EBV? If so Wonder if I shouldn't take the LDN at all (haven't started yet) and risk ebv and other issues.

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Jun 13, 2022Liked by Gavin Giovannoni

Thank you for the very clear explanation of the role of EBV in MS, I like the format. As well as hoping for a vaccine to prevent the cascade of EBV into MS, or for the development of a new treatment for MS, outside of the MS context, let's not forget the benefit of preventing EBV causing Glandular Fever during adolescence. I caught GF as a teenager, was hospitalised for months and seriously ill for a long time. I lost an important year of school and took a long time to re-integrate socially with my peers. 50 years later, I have never shaken off the feeling of viral fatigue and lethargy simmering away under the surface. Good luck with the research!

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Jun 13, 2022Liked by Gavin Giovannoni

You mentioned there are some existing ebv antivirals available - I can only find acyvlovir which doesn't have a lot of research into ms. Are there any others?

I would discuss with my neurologist before taking anything but wouldn't mind adding it to my daily routine

And also a therapeutic vaccine - if effective, would it be a treatment option that removes the need for ongoing DMT or would you think it would suppliment existing and future treatments

Eg EBV vaccine + BTK + EBV antiviral = MS stopped entirely.

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Jun 13, 2022Liked by Gavin Giovannoni

Proof here that it continues to drive progression. Post Mavenclad, I was able to drop the antivirals for a time, not recognizing that EBV is stored in epithelial cells as well as B memory cells. Here we go again. Waiting for an Infectious Disease appointment since MS neuro doesn’t treat EBV … but knowing ID likely won’t see MS progression as being “symptomatic”. I have friends who ARE convincing their neurologists to do a full panel upon decline and results are showing current reactivation. So many pipeline treatments for progressive MS now involving EBV suppression. For now, antivirals have helped me. Very interested in current research on famcyclovir and TAF (entering phase 3).

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Thanks for this very comprehensive and insightful video. I like the new format.

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Jun 13, 2022Liked by Gavin Giovannoni

I 100% believe that EBV caused my ms. Along with childhood traumas. In August of the year I was about to turn 16 (1992), I developed Glandular Fever. It knocked me for six and my mother said I was never quite the same afterwards. 10 years later, to the date, in the August of 2002, I was diagnosed with relapsing remitting MS. I have always believed that EBV has been the cause, and was very excited to learn that finally there has been evidence found! I wonder now if the BTK treatment would be better than hsct? After failing on Lemtrada, Tysabri, Fingolimod, Avonex and Copaxone I’m worried about what to try next. My ms is active, in that I am still experiencing relapses, which steroids help with, but my mri’s have been showing as ‘stable’.

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