Thank you so much for all your incredibly helpful and well presented information, including this. I am a newly diagnosed medic (Barts alum too!) just waiting to start Ocrevus, and have found it a complete minefield being on the other side. I have been particularly worried about what to do re: the risk to my 3 daughters (aged 10, 14 & 16); this answers all my questions, which is great. It means so much to see someone in your position so clearly positively and passionately advocating for your patients, it gives us great hope. We're happy to join in with trials to help - feel it's our duty. Very excited about all the EBV work and hopeful that the vaccine trial is fruitful!
Two queries….. firstly do we need K2 as well as vitamin D for it to be worthwhile taking and secondly is there anywhere currently we can register our child’s interest in being part of a trial or do we, more likely, need to await, a vaccine and study? Lol….. I know I’m jumping ahead!!
Ebv is very common about a 90% worldwide because there are many kinds. People who develop ms during their lifetime is probably around 1% worldwide. To relate them the way you do is actually kinda irresponsible. The right way to pit it is just a 32 higher chance of getting it in your lifetime. My whole husbands family has had ebv or some type of it. None of them have ms. And their ages range from 20s-70s. I believe it might be a first condition but followed by many other triggers to finally get ms.
Makes sense, i was diagnosed with ms after being perfectly healthy, 3-4 months after my partner had terrible glandular fever. I initially tested negative for ebv but when i had proper virology carried out recently for hsct it was positive. I actually commented on one of the posts on the old blog and you did tell me i would likely be positive if proper testing was carried out.
Jan 13, 2022·edited Jan 13, 2022Liked by Gavin Giovannoni
Thank you for sharing this.
I remember that when I was firstly diagnosed with MS in 2017 I immediately started searching for information online, and one of the first articles I stumbled across for some reason was one about the MS incidence in the Faroe islands and the theory of it being introduced via an ‘infectious agent’ in the ‘40s by English troops.
It’s interesting how a ‘random’ and fairly ‘anorthodox’ (as it was not proven) concept of MS as an epidemic that I came across as a naive patient back then might hold quite a bit of truth(?) And of course quickly after I also came across EBV as a theory.
Another thing I remember from my diagnosis was being explained by the doctor while in the hospital that ‘the immune cells go in the brain’ and then my first question was ‘how do make sure we get them out of the brain?’ A very basic question, but it seems so interestingly relevant, after observing now the discussion about how we can optimise treatment for BBB penetration.
This makes me think about the concept of ‘fresh perspectives’ being introduced into MS research. If most evidence is there in front of our eyes, how could we introduce as many new competent people into MS research that can see things for what they are and ‘get it done’?
What is missing? Is it the right people who can quickly come up with intelligent research designs and potential curative/preventive agents? Because you seem to be one of those. So then is it lobbying? Is it knowing the right people in pharma that have the power to move the needle? I wish with all my heart that I could personally contribute to MS being cured, I am just not sure how I could do that.
I can connect the dots of infectious Mono to my MS diagnosis by association, perhaps give insight into the catalyst of what triggered my MS attacks.
I was one to run to the fires, I presumed I was handling stress well, but learned stress takes no prisoners.
My two major MS attacks were during the highest stressors of my life, i was accustomed to moderate stress daily as a medical professional in a busy office.
However, I experienced periods of extreme high stress not ever experienced, then MS attacked in 2010 and 2013.
I contribute the two attacks to poor sleeping duration due to constant high stress at work/home.
Since then, i've learned to reduce stress and go slow in life or you lose.
My legs have rebounded, I'm still walking in my mid fifties, but the damage was done. Thankfully, no other attacks since 2013. I stopped working in 1-1-2020, fortuitous timing saved me from covid hell at the hospital, and the high stress. The hot summers worsen my MS, I can barely move after working outside in the heat for 3 hours vs 8 hours in the cold I don't worsen, I've learned I need to move to a cooler life.
I was infected with severe infectious mononucleosis at age 14, hitting me after a week long basketball camp where I wore my self out physically. `
I couldn't swallow resulting in dehydration in the hospital for 4 days, then years later my life changed. I recall abnormal fatigue in my late teen years, then especially after 7 long years of college, the fatigue worsened after graduation.
My mother had MS as well and older brother has MS, but won't get diagnosed.
Will a EBV vaccine help MSers like already partially damaged or not ?
Thank you so much for all your ideas about the cause of MS and the reasons why. Is there any way that MS could be caused by two different things for example the EBV and a trigger and something started before birth caused possibly by low folic acid and/or low Vit B12? I am only asking because of the number of different symptoms that people have. Some people like the cold whereas others like the heat and some people's MS like altitude and others like the hyperbaric oxygen chamber. All these different reactions/side effects for one illness?
Thank you so much for everything you have done and are doing to help us.
Dear Professor Giovannoni, So it seems evident that EBV must be present in order to develop MS. Do you know when Oligoclonal bands actually develop? For example, an individual diagnosed with EBV/Mono at age ~16, and then a diagnosis of MS at age ~28. Where along the way do these bands develop? And why is the presence of these bands such a mystery in MS research? Thank you for everything you do!! Truly, you are paving the way to discovering the causation of MS.
Is there a correlation with a higher EBV IGG titer and causation of MS? Meaning if you have a lower IGG is the likelihood to cause MS less than people with a higher titer level?
Thank you for the encouragement to be more active in advocating for this. i think we forget as patients sometimes how important it is to advocate for all PwMS / + at risk family while we are caught up dealing with all the other stuff that comes our way. I was very happy to read Moderna had its first trial participant dosed this month for its EBV vax. Here's hoping its a winner.
Do you think any EBV expressed membrane proteins could be targeted by monoclonal antibodies which would be more specific to EBV infected B cells than anti-CD20?
Thx for caring for pwMS. Suppose a jab is developed, who should get it? Should it be integrated in national vaccination programs? Will it be cheap enough?
Are there other blockers to starting a vaccine trial or simply put, do we, as an MS Community, need to find a way to raise the money to fund it, and if so how much?
Hi Prof G, my 82 year old father was diagnosed with PPMS in 2018. The idea of heritability is obviously concerning and I understand the limitations in what is currently possible. Would you be recommending the vit d3 protocol for my 16 year daughter - would there be any downside?
Thank you so much for all your incredibly helpful and well presented information, including this. I am a newly diagnosed medic (Barts alum too!) just waiting to start Ocrevus, and have found it a complete minefield being on the other side. I have been particularly worried about what to do re: the risk to my 3 daughters (aged 10, 14 & 16); this answers all my questions, which is great. It means so much to see someone in your position so clearly positively and passionately advocating for your patients, it gives us great hope. We're happy to join in with trials to help - feel it's our duty. Very excited about all the EBV work and hopeful that the vaccine trial is fruitful!
Is the incidence of MS higher in people that developed ACTIVE Mononucleosis as a child than those that didn't.
Two queries….. firstly do we need K2 as well as vitamin D for it to be worthwhile taking and secondly is there anywhere currently we can register our child’s interest in being part of a trial or do we, more likely, need to await, a vaccine and study? Lol….. I know I’m jumping ahead!!
Ebv is very common about a 90% worldwide because there are many kinds. People who develop ms during their lifetime is probably around 1% worldwide. To relate them the way you do is actually kinda irresponsible. The right way to pit it is just a 32 higher chance of getting it in your lifetime. My whole husbands family has had ebv or some type of it. None of them have ms. And their ages range from 20s-70s. I believe it might be a first condition but followed by many other triggers to finally get ms.
Makes sense, i was diagnosed with ms after being perfectly healthy, 3-4 months after my partner had terrible glandular fever. I initially tested negative for ebv but when i had proper virology carried out recently for hsct it was positive. I actually commented on one of the posts on the old blog and you did tell me i would likely be positive if proper testing was carried out.
there are people that say that post covid there was activation of EBV….do you have any experience/evidence regarding MS activation?
seems more and more coming your way doc!:
statnews.com/2022/01/13/strong-new-evidence-suggests-virus-triggers-multiple-sclerosis/
and there might be hope:
https://science.sciencemag.org/content/371/6525/145.full
Thank you for sharing this.
I remember that when I was firstly diagnosed with MS in 2017 I immediately started searching for information online, and one of the first articles I stumbled across for some reason was one about the MS incidence in the Faroe islands and the theory of it being introduced via an ‘infectious agent’ in the ‘40s by English troops.
It’s interesting how a ‘random’ and fairly ‘anorthodox’ (as it was not proven) concept of MS as an epidemic that I came across as a naive patient back then might hold quite a bit of truth(?) And of course quickly after I also came across EBV as a theory.
Another thing I remember from my diagnosis was being explained by the doctor while in the hospital that ‘the immune cells go in the brain’ and then my first question was ‘how do make sure we get them out of the brain?’ A very basic question, but it seems so interestingly relevant, after observing now the discussion about how we can optimise treatment for BBB penetration.
This makes me think about the concept of ‘fresh perspectives’ being introduced into MS research. If most evidence is there in front of our eyes, how could we introduce as many new competent people into MS research that can see things for what they are and ‘get it done’?
What is missing? Is it the right people who can quickly come up with intelligent research designs and potential curative/preventive agents? Because you seem to be one of those. So then is it lobbying? Is it knowing the right people in pharma that have the power to move the needle? I wish with all my heart that I could personally contribute to MS being cured, I am just not sure how I could do that.
Prof G,
I can connect the dots of infectious Mono to my MS diagnosis by association, perhaps give insight into the catalyst of what triggered my MS attacks.
I was one to run to the fires, I presumed I was handling stress well, but learned stress takes no prisoners.
My two major MS attacks were during the highest stressors of my life, i was accustomed to moderate stress daily as a medical professional in a busy office.
However, I experienced periods of extreme high stress not ever experienced, then MS attacked in 2010 and 2013.
I contribute the two attacks to poor sleeping duration due to constant high stress at work/home.
Since then, i've learned to reduce stress and go slow in life or you lose.
My legs have rebounded, I'm still walking in my mid fifties, but the damage was done. Thankfully, no other attacks since 2013. I stopped working in 1-1-2020, fortuitous timing saved me from covid hell at the hospital, and the high stress. The hot summers worsen my MS, I can barely move after working outside in the heat for 3 hours vs 8 hours in the cold I don't worsen, I've learned I need to move to a cooler life.
I was infected with severe infectious mononucleosis at age 14, hitting me after a week long basketball camp where I wore my self out physically. `
I couldn't swallow resulting in dehydration in the hospital for 4 days, then years later my life changed. I recall abnormal fatigue in my late teen years, then especially after 7 long years of college, the fatigue worsened after graduation.
My mother had MS as well and older brother has MS, but won't get diagnosed.
Will a EBV vaccine help MSers like already partially damaged or not ?
Thank you so much for all your ideas about the cause of MS and the reasons why. Is there any way that MS could be caused by two different things for example the EBV and a trigger and something started before birth caused possibly by low folic acid and/or low Vit B12? I am only asking because of the number of different symptoms that people have. Some people like the cold whereas others like the heat and some people's MS like altitude and others like the hyperbaric oxygen chamber. All these different reactions/side effects for one illness?
Thank you so much for everything you have done and are doing to help us.
Dear Professor Giovannoni, So it seems evident that EBV must be present in order to develop MS. Do you know when Oligoclonal bands actually develop? For example, an individual diagnosed with EBV/Mono at age ~16, and then a diagnosis of MS at age ~28. Where along the way do these bands develop? And why is the presence of these bands such a mystery in MS research? Thank you for everything you do!! Truly, you are paving the way to discovering the causation of MS.
Is there a correlation with a higher EBV IGG titer and causation of MS? Meaning if you have a lower IGG is the likelihood to cause MS less than people with a higher titer level?
Thank you for the encouragement to be more active in advocating for this. i think we forget as patients sometimes how important it is to advocate for all PwMS / + at risk family while we are caught up dealing with all the other stuff that comes our way. I was very happy to read Moderna had its first trial participant dosed this month for its EBV vax. Here's hoping its a winner.
Do you think any EBV expressed membrane proteins could be targeted by monoclonal antibodies which would be more specific to EBV infected B cells than anti-CD20?
Dear Prof G
Thx for caring for pwMS. Suppose a jab is developed, who should get it? Should it be integrated in national vaccination programs? Will it be cheap enough?
Thankyou for making this so clear.
Are there other blockers to starting a vaccine trial or simply put, do we, as an MS Community, need to find a way to raise the money to fund it, and if so how much?
Hi Prof G, my 82 year old father was diagnosed with PPMS in 2018. The idea of heritability is obviously concerning and I understand the limitations in what is currently possible. Would you be recommending the vit d3 protocol for my 16 year daughter - would there be any downside?