A short talk I gave on EBV vaccination as a strategy to prevent and/or treat MS. Do you think it is feasible? What do we need to do to make this a reality?
Eid et al. Association of adverse childhood experiences with the development of multiple sclerosis. J Neurol Neurosurg Psychiatry . 2022 Jun;93(6):645-650.
Objective: To study whether exposure to childhood emotional, sexual or physical abuse is associated with subsequent multiple sclerosis (MS) development.
Methods: A nationwide, prospective cohort study based on participants in the Norwegian Mother, Father and Child cohort study. Enrolment took place 1999-2008, with follow-up until 31 December 2018. Childhood abuse before age 18 years was obtained from self-completed questionnaires. We identified MS diagnoses through data-linkage with national health registries and hospital records. The Cox model was used to estimate HRs for MS with 95% CIs, adjusting for confounders and mediators.
Results: In this prospective cohort study, 14 477 women were exposed to childhood abuse and 63 520 were unexposed. 300 women developed MS during the follow-up period. 71 of these (24%) reported a history of childhood abuse, compared with 14 406 of 77 697 (19%) women that did not develop MS. Sexual abuse (HR 1.65, 95% CI 1.13 to 2.39) and emotional abuse (HR 1.40, 95% CI 1.03 to 1.90) in childhood were both associated with an increased risk of developing MS. The HR of MS after exposure to physical abuse was 1.31 (95% CI 0.83 to 2.06). The risk of MS was further increased if exposed to two (HR 1.66, 95% CI 1.04 to 2.67) or all three abuse categories (HR 1.93, 95% CI 1.02 to 3.67).
Interpretation: Childhood sexual and emotional abuse were associated with an increased risk of developing MS. The risk was higher when exposed to several abuse categories, indicating a dose-response relationship. Further studies are needed to identify underlying mechanisms.
Agree! It’s a complicated picture! Several factors at play. For me I think stress played a huge role in triggering my immune system into overdrive, along with EBV and possibly low Vitamin D. I’ll never really know for sure but if EBV plus other factors are the cause, knocking out a main player must surely be key
I think there are probably big events that cause enough stress to impact our immune systems over a period of time. I think two pregnancies in succession and the ensuing 4 years of chronic sleeplessness coincided with my MS becoming active.
Jul 12, 2022·edited Jul 12, 2022Liked by Gavin Giovannoni
I had an issue with the valve to my ureter where it joins my kidney when I was born, resulting in undiagnosed reflux and kidney scarring for years. I was given septrin a nasty sulphonamide antibiotic for several years before I was 7 - which completely decimated my microbiome and vitamins and had a lasting effect for a decade - even triggering an extreme sensitivity to sun exposure with swelling of the face and increased heart rate and blistering after just a few minutes. I had to avoid the sun completely between the age of 14 - 24 when it gradually resolved. Along with smoking in my early 20s, being female, there’s most of the environmental factors down without even making a conscious effort, was just waiting for the physical stress of having kids later in life to light the touch 🔥paper 😂😂
Yes! I can relate to your life stress. My young years were spent indoors with illness as well. Also as you point out, having children is a body and life stress, and a c-section really seemed the onset of my symptoms. The potential role of EBV is extremely intriguing to me. Having every possible herpes virus, I’ve puzzled that if there’s a vaccine for zoster, why we don’t have one for the others? (An aside, what’s the connection with month of birth?) Thank you for all of this, Professer G. Get well! I hope you’re getting sleep!
Thank you for this. Have you considered looking at childhood traumatic events as part of the puzzle? After reading The Body Keeps The Score (Bessel Van Der Kolk), attending a workshop on Complex PTSD and studying to become a counsellor, I can understand how the brain and body, and also immune system, changes due to trauma. I believe it was an important factor in my development of MS 20 years ago.
Did anything get agreed at the meeting regarding starting an EBV vaccination study or using anti-virals for people with MS?
I can see why the term “necessary but not sufficient” is a bit confusing. It doesn’t really capture the critical importance of EBV infection / mono ie if you never get infected with EBV you won’t get MS. How do you know that EBV infection isn’t enough on its own? I know lots of MSers who never smoked, were out-doorsy, and didn’t work with chemicals. Perhaps it’s only the (bad) genes that are required with EBV infection.
Thank you for sharing your thoughts around this. I think this is great and agree that it needs both to be done and to be a large international effort. I would definitely help in any way that I possibly can.
The way it is put forward here, though, with the (outrageous) power calculations, I wonder if the costs of this trial are very high and likely something for the UK, EU, US and/or pharmaceutical companies to fund. But perhaps public engagement is something that is encouraged - this site and post is clearly engaging the public. The way I understand this proposal, this trial could have a remarkable impact on all levels, from providing final (?) scientific proof of a theory to potentially 'removing' a previously untreatable disorder. What more could a trial do? It is bold, but also a 'no-brainer' once it is laid out (if the safety of the vaccine is good). I really hope you can get an international group coordinated on this.
I have genuinely no idea, but I get an image that people who develop MS have minor genetic changes that causes some proteins to fold slightly differently than they were supposed to, and when these people get infected with EBV, a whole cascade of disastrous outcomes are triggered.
I know that the blockers could be revenue for the companies participating. When COVID first stated many organisations collaborated. A "crowd-sourced" model for this to progress a vaccine or get answers for MS treatment might be an option.
I would like to know if EBV vaccines for people that already have MS might be beneficial?
Agree entirely on the stress factor I was just eighteen when my eldest daughter was born very bad forceps birth (was told caesarean should have been performed ) resulted in brain damage to my daughter and epilepsy cerebral palsy 44 years later terrible behaviour difficulties add to that nursing my dad and my husband through major surgery ( just to add my husband left as soon as i needed a stick to walk) and my very lovely youngest daughter ( love them both) twelve years or so after the birth started very strange symptoms which I now know were the start of m.s. so I totally agree with the stress related theory
I had mono., caused by EBV, in 1987, at the age of 17, but my sister didn’t. I was diagnosed with MS, 4 years later., and since then, I’ve often wondered why researchers could not see the direct correlation?
I am sure that EBV vaccines will prevent people from getting MS. I hope that anti EBV therapies will be developed and that eradication of chronic EBV will be an effective or curative therapy, this gives me hope (medical evidences are with us)! I think that the therapeutical role of mRNA vaccine in chronic infection is undervalued.
This is fascinating to me as a pwMS diagnosed in 2014 with highly active rapidly evolving RRMS and on Tysabri as my DMD.
In the UK is this shared with the MS Society who already keep an MS Register which I complete regularly and with the MS Trust because they are my go to charities since my diagnosis?
I would love to help to develop something from a pwMS perspective for use with General Practitioners? It's been on my mind since my diagnosis but I haven't taken it any further to date because living with MS and volunteering has been my focus up until now.
Thank you so much for sharing this Prof G, it is greatly appreciated!
Hi Prof G, I’m organising a fundraiser & would like to raise funds for an MS cause. I usually donate to the MS Society but thought this time I could raise money for the MS-Selfie. I don’t think it’s a registered charity, is it? Can I still do this? I plan to do a verrry long swimathon :) :)
Thanks for the thought. Unfortunately, it is not a registered charity. Simply too much red tape setting-up and running a charity at short notice. But can you raise money for the MS teaching course that is planned via my University; Queen Mary University of London that is a registered charity. I did over COVID-19 for our Barts-MS antibody study.
Eid et al. Association of adverse childhood experiences with the development of multiple sclerosis. J Neurol Neurosurg Psychiatry . 2022 Jun;93(6):645-650.
Objective: To study whether exposure to childhood emotional, sexual or physical abuse is associated with subsequent multiple sclerosis (MS) development.
Methods: A nationwide, prospective cohort study based on participants in the Norwegian Mother, Father and Child cohort study. Enrolment took place 1999-2008, with follow-up until 31 December 2018. Childhood abuse before age 18 years was obtained from self-completed questionnaires. We identified MS diagnoses through data-linkage with national health registries and hospital records. The Cox model was used to estimate HRs for MS with 95% CIs, adjusting for confounders and mediators.
Results: In this prospective cohort study, 14 477 women were exposed to childhood abuse and 63 520 were unexposed. 300 women developed MS during the follow-up period. 71 of these (24%) reported a history of childhood abuse, compared with 14 406 of 77 697 (19%) women that did not develop MS. Sexual abuse (HR 1.65, 95% CI 1.13 to 2.39) and emotional abuse (HR 1.40, 95% CI 1.03 to 1.90) in childhood were both associated with an increased risk of developing MS. The HR of MS after exposure to physical abuse was 1.31 (95% CI 0.83 to 2.06). The risk of MS was further increased if exposed to two (HR 1.66, 95% CI 1.04 to 2.67) or all three abuse categories (HR 1.93, 95% CI 1.02 to 3.67).
Interpretation: Childhood sexual and emotional abuse were associated with an increased risk of developing MS. The risk was higher when exposed to several abuse categories, indicating a dose-response relationship. Further studies are needed to identify underlying mechanisms.
Agree! It’s a complicated picture! Several factors at play. For me I think stress played a huge role in triggering my immune system into overdrive, along with EBV and possibly low Vitamin D. I’ll never really know for sure but if EBV plus other factors are the cause, knocking out a main player must surely be key
I think there are probably big events that cause enough stress to impact our immune systems over a period of time. I think two pregnancies in succession and the ensuing 4 years of chronic sleeplessness coincided with my MS becoming active.
I had an issue with the valve to my ureter where it joins my kidney when I was born, resulting in undiagnosed reflux and kidney scarring for years. I was given septrin a nasty sulphonamide antibiotic for several years before I was 7 - which completely decimated my microbiome and vitamins and had a lasting effect for a decade - even triggering an extreme sensitivity to sun exposure with swelling of the face and increased heart rate and blistering after just a few minutes. I had to avoid the sun completely between the age of 14 - 24 when it gradually resolved. Along with smoking in my early 20s, being female, there’s most of the environmental factors down without even making a conscious effort, was just waiting for the physical stress of having kids later in life to light the touch 🔥paper 😂😂
Yes! I can relate to your life stress. My young years were spent indoors with illness as well. Also as you point out, having children is a body and life stress, and a c-section really seemed the onset of my symptoms. The potential role of EBV is extremely intriguing to me. Having every possible herpes virus, I’ve puzzled that if there’s a vaccine for zoster, why we don’t have one for the others? (An aside, what’s the connection with month of birth?) Thank you for all of this, Professer G. Get well! I hope you’re getting sleep!
I believe t was stressful events that was the trigger for relapses in the past and expect future will do the same too.
Thank you for this. Have you considered looking at childhood traumatic events as part of the puzzle? After reading The Body Keeps The Score (Bessel Van Der Kolk), attending a workshop on Complex PTSD and studying to become a counsellor, I can understand how the brain and body, and also immune system, changes due to trauma. I believe it was an important factor in my development of MS 20 years ago.
Yes, childhood trauma has been shown in one study to increase MS risk, but this needs to be confirmed.
Would having viral meningitis as a child count too?
Thank you so much and I hope you are feeling better
Did anything get agreed at the meeting regarding starting an EBV vaccination study or using anti-virals for people with MS?
I can see why the term “necessary but not sufficient” is a bit confusing. It doesn’t really capture the critical importance of EBV infection / mono ie if you never get infected with EBV you won’t get MS. How do you know that EBV infection isn’t enough on its own? I know lots of MSers who never smoked, were out-doorsy, and didn’t work with chemicals. Perhaps it’s only the (bad) genes that are required with EBV infection.
Nothing was decided. We are having a debrief today to discuss the next steps.
Yes, it could be faulty genes on their own. These other factors are not necessary nor sufficient to get MS, which is why bad luck plays a role.
Which genes exactly might be defective or predisposed to develop multiple sclerosis in your opinion?
Thank you for sharing your thoughts around this. I think this is great and agree that it needs both to be done and to be a large international effort. I would definitely help in any way that I possibly can.
Yes me too, I was wondering if there’s fundraising events we can do
I like that idea and would gladly do my part!
The way it is put forward here, though, with the (outrageous) power calculations, I wonder if the costs of this trial are very high and likely something for the UK, EU, US and/or pharmaceutical companies to fund. But perhaps public engagement is something that is encouraged - this site and post is clearly engaging the public. The way I understand this proposal, this trial could have a remarkable impact on all levels, from providing final (?) scientific proof of a theory to potentially 'removing' a previously untreatable disorder. What more could a trial do? It is bold, but also a 'no-brainer' once it is laid out (if the safety of the vaccine is good). I really hope you can get an international group coordinated on this.
I have genuinely no idea, but I get an image that people who develop MS have minor genetic changes that causes some proteins to fold slightly differently than they were supposed to, and when these people get infected with EBV, a whole cascade of disastrous outcomes are triggered.
I know that the blockers could be revenue for the companies participating. When COVID first stated many organisations collaborated. A "crowd-sourced" model for this to progress a vaccine or get answers for MS treatment might be an option.
I would like to know if EBV vaccines for people that already have MS might be beneficial?
Agree entirely on the stress factor I was just eighteen when my eldest daughter was born very bad forceps birth (was told caesarean should have been performed ) resulted in brain damage to my daughter and epilepsy cerebral palsy 44 years later terrible behaviour difficulties add to that nursing my dad and my husband through major surgery ( just to add my husband left as soon as i needed a stick to walk) and my very lovely youngest daughter ( love them both) twelve years or so after the birth started very strange symptoms which I now know were the start of m.s. so I totally agree with the stress related theory
so sorry to hear your husband did that to you. :'(
Hello Dr. Giovanni,
have you heard if the ATA 188 study, being conducted in the US, to see whether EBV is a contributing factor, to eventual diagnosis with MS?
The interim results didn’t seem positive unfortunately
Yes I have. We are waiting for the phase 2 results. It is an important study.
I had mono., caused by EBV, in 1987, at the age of 17, but my sister didn’t. I was diagnosed with MS, 4 years later., and since then, I’ve often wondered why researchers could not see the direct correlation?
I am sure that EBV vaccines will prevent people from getting MS. I hope that anti EBV therapies will be developed and that eradication of chronic EBV will be an effective or curative therapy, this gives me hope (medical evidences are with us)! I think that the therapeutical role of mRNA vaccine in chronic infection is undervalued.
This is fascinating to me as a pwMS diagnosed in 2014 with highly active rapidly evolving RRMS and on Tysabri as my DMD.
In the UK is this shared with the MS Society who already keep an MS Register which I complete regularly and with the MS Trust because they are my go to charities since my diagnosis?
I would love to help to develop something from a pwMS perspective for use with General Practitioners? It's been on my mind since my diagnosis but I haven't taken it any further to date because living with MS and volunteering has been my focus up until now.
Thank you so much for sharing this Prof G, it is greatly appreciated!
Are you aware of the ATA 188 study testing for the same factors in the State?
Yes I am. I am conflicted as I am a consultant for Atara. Fingers crossed the phase 2 trial is positive.
Thank you sir for sharing your thoughts on this. Can existing antivirals be used to bring down the number of anti-EBNA1 antibodies and hence treat MS?
Could MS be cured if immune system could be made to tolerate myelin sheath? Is there any research going on on that front?
Bad luck such an insult. Also your circle is off where it should be.
Well it’s not good luck is it!
Hi Prof G, I’m organising a fundraiser & would like to raise funds for an MS cause. I usually donate to the MS Society but thought this time I could raise money for the MS-Selfie. I don’t think it’s a registered charity, is it? Can I still do this? I plan to do a verrry long swimathon :) :)
Thanks for the thought. Unfortunately, it is not a registered charity. Simply too much red tape setting-up and running a charity at short notice. But can you raise money for the MS teaching course that is planned via my University; Queen Mary University of London that is a registered charity. I did over COVID-19 for our Barts-MS antibody study.
I do not ever remember having EBV as child or or teenager. Is this something I should ask my neuro to test for?