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).
Why aren’t the disease experts working together against the common enemy (EBV)?
Perhaps the way forward is to let virologists (EBV is a virus) take the lead. By coming up with a vaccine for EBV / effective anti-virals they can then develop a treatment strategy for the various cancers and autoimmune diseases caused by EBV. All the specific disease experts (neurologists, endocrinologists etc.) would have to do was implement the strategy for their specific diseases. They don’t need to be involved in their own research - it becomes too piecemeal and they can’t see the wood for the trees.
I can’t comment on your abilities as a politician. However, If this worked for MS isn’t taken forward with speed (we know EBV causes MS and EBV vaccines and anti-virals are on the horizon) you’ll be the BOJO of MSology - lots of bluster.
It is not for lack of trying. On the last count I think I was at 13 grants in a row turned down for studying the EBV-MS hypothesis. And it is not only a UK phenomenon; colleagues in mainland Europe are fighting a similar battle. It is just energy sapping.
You say that but I recently did a lay grant review for a charitable trust funding research into RA, lupus and MS. The idea was to step back from the individual diseases and look at causes of autoimmunity. Sadly no mention of ebv on this occasion.
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!
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
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.
Yes, congenital EBV infection can occur, but it is rare and tends to occur when systemic EBV infection is active in the mother at the time of birth. The latter is usually restricted to women who are immunosuppressed, for example, women with HIV infection. For this reason most neonates are EBV negative and are probably protected from getting EBV infection, by the transplacental transfer of protective antibodies from the mother. This then sets them up for delayed infection later on in life when these protective maternal antibodies disappear. The latter makes them susceptible to infection either vertically from their mother's saliva or horizontally from other people they come into contact with.
Jun 15, 2022·edited Jun 15, 2022Liked by Gavin Giovannoni
Richard,
Thank you for your comment. The tragic early deaths of your maternal grandmother and brother illustrate how dreadful this disease is and how, in my opinion, it should be treated as seriously same as cancer. “Auto-Immune” sounds quite benign compared to “disabling and life shortening disease”. My aunt (half-aunt) died in her early 50s - it led to the quick death of her father who was in his mid 70s and never got over the tragedy. Your case also points to the role of inherited genes (?faulty). I think MS is caused by a combination of EBV infection (bad case at a certain point eg teens) and the wrong genes. I think the importance of the “MS” genes has been underplayed. However, unless genes can be modified, EBV must be the target to prevent / stop this disease.
Yes that's true, there is still no evidence about COVID-19. Maybe in the future will be more clear to the scientific community that long covid triggers autoimmune diseases. I think also if there is a previous EBV infection.
What do you think about remyelinisation drugs? Can we have in few years? Maybe stopping EBV with antivirals in people who have MS will block the disease? Thanks for your quick reply.
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?
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?
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.
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!
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
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).
I will do a separate research update on anti-virals. Our phase 2 proof-of-concept famciclovir study will be completed later this year. And the TAF study, to the best of my knowledge, is on hold pending funding.
Jun 13, 2022·edited Jun 13, 2022Liked by Gavin Giovannoni
Thank you! Phase 2 TAF was very promising but none of these will be in time for me. Definitely will be hoping for “next best” shortly. Something that addresses both B mem AND epithelial hosting would be amazing.
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’.
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).
Yes, but try and get these people talking to each other. I am trying but unsuccessfully. To be honest I am not a very good politician.
It’s a shame that the experts for different autoimmune diseases operate in their little stove pipes. I know nothing about lupus, but a 5 second search on Google revealed that ebv is also involved in this disease: https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwiX9PGu6ar4AhWZi1wKHdRlAsMQFnoECAcQAQ&url=https%3A%2F%2Fwww.frontiersin.org%2Farticles%2F10.3389%2Ffimmu.2020.623944%2Ffull&usg=AOvVaw30qj2USU8HVEWRkuJtmj3x
Why aren’t the disease experts working together against the common enemy (EBV)?
Perhaps the way forward is to let virologists (EBV is a virus) take the lead. By coming up with a vaccine for EBV / effective anti-virals they can then develop a treatment strategy for the various cancers and autoimmune diseases caused by EBV. All the specific disease experts (neurologists, endocrinologists etc.) would have to do was implement the strategy for their specific diseases. They don’t need to be involved in their own research - it becomes too piecemeal and they can’t see the wood for the trees.
I can’t comment on your abilities as a politician. However, If this worked for MS isn’t taken forward with speed (we know EBV causes MS and EBV vaccines and anti-virals are on the horizon) you’ll be the BOJO of MSology - lots of bluster.
It is not for lack of trying. On the last count I think I was at 13 grants in a row turned down for studying the EBV-MS hypothesis. And it is not only a UK phenomenon; colleagues in mainland Europe are fighting a similar battle. It is just energy sapping.
He that is good for making excuses is seldom good for anything else.
Benjamin Franklin
You say that but I recently did a lay grant review for a charitable trust funding research into RA, lupus and MS. The idea was to step back from the individual diseases and look at causes of autoimmunity. Sadly no mention of ebv on this occasion.
Ps you're a natural politician!
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!
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
Good idea; I need to think about how we do this. We can at least start with asking for your support for some of the trials we are doing.
Please do ask we all know the support you get on all your threads we are all supportive of you and your amazing work and support for the M.S. tribe
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.
Yes, congenital EBV infection can occur, but it is rare and tends to occur when systemic EBV infection is active in the mother at the time of birth. The latter is usually restricted to women who are immunosuppressed, for example, women with HIV infection. For this reason most neonates are EBV negative and are probably protected from getting EBV infection, by the transplacental transfer of protective antibodies from the mother. This then sets them up for delayed infection later on in life when these protective maternal antibodies disappear. The latter makes them susceptible to infection either vertically from their mother's saliva or horizontally from other people they come into contact with.
Richard,
Thank you for your comment. The tragic early deaths of your maternal grandmother and brother illustrate how dreadful this disease is and how, in my opinion, it should be treated as seriously same as cancer. “Auto-Immune” sounds quite benign compared to “disabling and life shortening disease”. My aunt (half-aunt) died in her early 50s - it led to the quick death of her father who was in his mid 70s and never got over the tragedy. Your case also points to the role of inherited genes (?faulty). I think MS is caused by a combination of EBV infection (bad case at a certain point eg teens) and the wrong genes. I think the importance of the “MS” genes has been underplayed. However, unless genes can be modified, EBV must be the target to prevent / stop this disease.
Great primer! I had been in the "okay EBV causes MS so what now?" boat but this really explains the ecosystem.
Very informative, thank you, and I find the vlogs easier to learn from than reading. Thanks again.
Of course EBV and also Covid 19 causes and triggers MS
Not sure there is evidence about COVID-19. COVID-19 is a new disease and MS has been around for centuries m
Yes that's true, there is still no evidence about COVID-19. Maybe in the future will be more clear to the scientific community that long covid triggers autoimmune diseases. I think also if there is a previous EBV infection.
What do you think about remyelinisation drugs? Can we have in few years? Maybe stopping EBV with antivirals in people who have MS will block the disease? Thanks for your quick reply.
Thanks for this video. So exciting that ebv hypothesis gathering traction
Sent too soon, wanted to ask re ebv and memory B cells:
Is ebv infection what first causes a B cell to become a memory B cell? Ie no ebv = no memory B cells = no lifelong immunity (after plasma cells dead)
So this would be the minus side to ebv vaccination?
No. EBV negative people have good memory B-cells and most memory B-cells are EBV negative.
Thanks have always been confused about this
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?
Ask your doctor to write you up as a case report and you can feed further research.
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?
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.
Not sure how LDN reactivates EBV. I would be surprised if it did. Also the evidence that LDN works in MS is very weak. More studies are required.
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!
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.
Please don't get ahead of yourself. We are talking about research here not clinical practice.
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).
What anti virals where you taking? Might ask my neuro to add them as a supplement to Tysabri before I switch to Mavenclad later in the year
I will do a separate research update on anti-virals. Our phase 2 proof-of-concept famciclovir study will be completed later this year. And the TAF study, to the best of my knowledge, is on hold pending funding.
Thank you! Phase 2 TAF was very promising but none of these will be in time for me. Definitely will be hoping for “next best” shortly. Something that addresses both B mem AND epithelial hosting would be amazing.
Thanks for this very comprehensive and insightful video. I like the new format.
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’.