Many people who developed MS quite soon after COVID-19 or after receiving a COVID-19 vaccine are likely to question whether or not their disease was caused by either the infection or the vaccine.
I loved this example and response. I also am SO happy you stated you do not believe MS is an autoimmune illness. I think framing it as an autoimmune disease makes it seem less serious and decreases urgency to cure. I am a marketer and many would be surprised at the power of branding and strongly believe that reframing MS as a virus that never leaves your body and attacks and shreds your brain and spinal cord even while everything seems “fine” will lead to a very different attitude towards this disease and hopefully improve patient outcomes
I’d love to see something about vaccines. The rise of anti vaxers and increase in mosquito borne viruses makes me nervous for the long term
More and more young parents aren’t getting kid’s vaccines which is shocking to me
As an MS community I’m seeing this thinking seep into social media groups and knowing ebv is the trigger we all want a vaccine for ebv (+ treatment for those of us already with MS) how are we going to convince the wider public + pwMS to take this vaccine?
As an Aussie (we have very high vax rates across the board, 95% measles vaccine uptake) seeing cases of mumps come here recently and a case of measles a few months ago (both brought into australia) is disturbing
Unfortunately social media is to blame for the rise of vaccine skepticism
Sorry to be negative Dr.,... Just look at the response to covid vaccination. I doubt an EBV vaccine would become widely accepted, maybe 50% at most (my guess). And as Christian points out, see what is happeneing to current vaccine treatments (we all had as kids). Would 50% EBV vaccine compliance on the larger scale, or just individually, make a difference or is another angle needed with EBV?
I presented with highly active MS. The medics needed evidence of a second attack to get a confirmed diagnosis. I reported new symptoms, but these weren't recognised as a new relapse and I was told to have the jab ASAP, otherwise I couldn't have further medical treatment. I took it, and then all hell broke loose. Taking a vaccine, at the start of what was a relapse, was akin to putting petrol onto a fire. The guy at the time told me off the record that 'we were just told to prioritise this jab, we didn't realise you were in a relapse'. As I say, I had highly active MS and had reported new symptoms. I then got "too many lesions to count." and spent five days in a neuro ward. All I am saying is be really careful WHEN you take these jabs. I have had three, and now have concerns about them (even when this is not allowed to be discussed in the press/parliament) - I won't be taking any more.
I had mono 2 years ago. After around 2 months from mono got first Covid vaccine. Few months later first MS symptoms appeared. I think it was because of EBV. In my family there were no MS cases. Anyway MS is a monster. Maybe people with RRMS dont see it at the beginning but for those with PPMS this illness is like a nightmare :-(
First.. very healthy.. active adult. Working out 6 days a week before Covid. My second Covid booster was Pfizer. A few days after I received I had the worst sore throat… one that I recall I had when I had mono as a teen. It lasted a few days. Then for months after never felt right.. finally had weird stroke like symptoms .. went to hospital. 10 months after the booster at 56 I was diagnosed with MS. My neurologist said my MS was odd.. not normally what is seen on MRIs… even had more blood work so ensure it wasn’t something else… but it’s MS. I am on DMT… I feel good/back to working out consistently. I know I have no way to prove the booster caused… but hard not to see the correlation.
Again, thanks for having the maturity/vision to even ask the question... at a time when seemingly ANY scrutiny is shut down and deemed 'anti vax conspiracy theory.'
May 2, 2023·edited May 2, 2023Liked by Gavin Giovannoni
I had 3 vaccinations with no issues. Subsequently, when I caught covid last year, I started experiencing MS symptoms a few months after my Covid infection. I had fever and cough for a month during my covid infection. My brain scan showed lesions in Jan this year. Did Covid trigger my MS or did it reactivate my EBV infection I had 30 years ago? My mom had PPMS so I am genetically predisposed.
Unfortunately, we can't draw too many conclusions from a single case. This is why we need randomised controlled trials. I have been trying for 7+ years to get a HAART trial in MS off the ground with little luck. It is like banging your head against a brick wall.
Why do you think pharma companies are so hesitant to fund studies like this? Is it because so many of the potentially active agents are generic? I am frustrated that each next step in research is for incredibly costly drugs that haven’t been around as long. HAART is taken by millions daily! I do still think a study of MS incidence in people on PreP would be great--there are 70,000 people on PrEP in the UK. If you are right about the field hypothesis, there would a less than expected incidence of MS, right?
I was diagnosed shortly after having the 2nd dose. Exactly as you said though, my MRI had old lesions and active ones, suggesting that my MS predated the pandemic/vaccine. My neuro said it was more likely 'triggered' by a miscarriage I had.
I had an illness last year that I suspect was covid (I’ve never tested myself for covid) that made all my underlying MS symptoms go away. I suspect it was covid because I lost my taste and smell. It felt like my immune system was busy fighting an actual invader and stopped its low level assault on my mobility. It was the best feeling! Losing my test and smell was annoying but the trade off of being able to run and jump were worth it. Not that I care to run or jump but I had a noticeably fantastic horseback riding experience while it was happening.
Everytime my system gears up to fighting "something new" I get a temporary reprieve in fatigability so much so I've been wondering how i can recreate it periodically safely.
I wonder too how to replicate that. I definitely would. Though I highly doubt it’s possible to consistently trick the body without adaption eventually.
Because they work ;-) All effective DMTs, with the exception of teriflunomide reduce memory B-cells or stop them trafficking into the CNS. Memory B-cell is the cell where latent EBV resides. Teriflunomide on the other hand is antiviral.
The unpublished evidence is surely crucial here - there are a large amount of pre-print studies which, strangely, never appear in the mainstream journals these days, particularly on post-vaccination autoimmunity (as a trigger for latent autoimmunity or potentially causative). Are you perhaps unaware of the extent of the unpublished evidence? Recent papers have included alarming rises in Guillan-barre Syndrome cases, Vasculitis, Type 1 Diabetes and many more auto-immune conditions, not to mention MS. Economist Edward Dowd has evidenced huge numbers of vaccine injuries/huge rise in disability in healthy working adults, based on independent US health insurance data.
Yes, I am aware of this data. I am saying COVID-19 increases your risk of getting autoimmune diseases, but just not MS. The point I am making is MS is the outlier. Why?
From clinical experience, so many people also put exacerbations down to their MS, rather than vaccination - I know someone with MS who is in hospital with life-threatening GBS (post-vaccination). It is strange the extent of the correlation between vaccination roll-out and new/worsening MS symptoms. Is it just that the data is not being published here?
The Saudi study is too small and likely to be an outlier. You really need very large population-based studies to draw any conclusions. MS does not develop in days or months; it take years for MS to develop. The idea that COVID-19 causes MS is not congruent with current knowledge. Much more likely is that COVID-19 triggered an attack in someone who had asymptomatic MS or RIS (radiologically isolated syndrome) already. This is very different to causing MS. This is the point I am making in this newsletter. The data for the vaccine is much less convincing than that for COVID-19 itself. An infection is a much stronger immunological stimulus than a vaccine.
Really good newsletter! I wondered what your thoughts are on her being post-natal? Both me and my sister’s MS became evident within a year of having babies, I wondered if the biological stress/strain on the body (eg chronic sleeplessness) would that be enough to trigger lesion activity or EBS reactivation? Or are the hormones a factor, or the immune system changes in pregnancy?
Yes, pregnancy is a state of relative immunosuppression and post-partum is associated with reversal of this state. The latter may explain the risk. Relapses are more common post-partum, which may explain why many women present with their first attack in this period.
My first symptom (optic neuritis) occurred when my first born was 7 months old. I had about 3 bouts. MS not mentioned thankfully and I went on gave another baby. MS diagnosed at 35.
Possibly childbirth just coincides with typical age of onset - but wondering if hormones or physiological stress might trigger or influence severity of relapse which in turn causes symptoms for diagnosis?
No I am not aware of mite infestations and anti-CD20 therapy. I am not sure antibody responses are that effective against extracellular parasites. Saying this Demodex is associated with immunosuppression, particularly in people with diabetes. I assume you have been screened for diabetes.
Great article! I too blamed covid for deteroriation of my MS, but I believe it was 2 month od battling pneumonia which caused my worsening (despite clean MRI), and poor choice of antibiotics by my doctors, not covid itself.
May 2, 2023·edited May 2, 2023Liked by Gavin Giovannoni
I’ve had no issues with any vax. I had Covid last fall (late for booster) and ended up having a *new* relapse and an uptick in an old area of damage (both brainstem). However, the lesion for the new relapse was seen on imaging August, quite small and no symptoms yet. Covid definitely caused some sort of generalized inflammation (possibly EBV driven) - I’ve not had an MRI post to see what changes happened. I understand covid also reduces CD8+ T cells and am curious about your thoughts on how this might impact MS/treatments.
Not sure COVID-19 impacts DMTs in any way. But a reduction in CD8+ T-cells may increase your likelihood of having certain types of infections, in particular viral infections such as Zoster.
I loved this example and response. I also am SO happy you stated you do not believe MS is an autoimmune illness. I think framing it as an autoimmune disease makes it seem less serious and decreases urgency to cure. I am a marketer and many would be surprised at the power of branding and strongly believe that reframing MS as a virus that never leaves your body and attacks and shreds your brain and spinal cord even while everything seems “fine” will lead to a very different attitude towards this disease and hopefully improve patient outcomes
Just a future request
I’d love to see something about vaccines. The rise of anti vaxers and increase in mosquito borne viruses makes me nervous for the long term
More and more young parents aren’t getting kid’s vaccines which is shocking to me
As an MS community I’m seeing this thinking seep into social media groups and knowing ebv is the trigger we all want a vaccine for ebv (+ treatment for those of us already with MS) how are we going to convince the wider public + pwMS to take this vaccine?
We need a public health and political campaign. Something I have been pushing for.
Very true
As an Aussie (we have very high vax rates across the board, 95% measles vaccine uptake) seeing cases of mumps come here recently and a case of measles a few months ago (both brought into australia) is disturbing
Unfortunately social media is to blame for the rise of vaccine skepticism
Sorry to be negative Dr.,... Just look at the response to covid vaccination. I doubt an EBV vaccine would become widely accepted, maybe 50% at most (my guess). And as Christian points out, see what is happeneing to current vaccine treatments (we all had as kids). Would 50% EBV vaccine compliance on the larger scale, or just individually, make a difference or is another angle needed with EBV?
I presented with highly active MS. The medics needed evidence of a second attack to get a confirmed diagnosis. I reported new symptoms, but these weren't recognised as a new relapse and I was told to have the jab ASAP, otherwise I couldn't have further medical treatment. I took it, and then all hell broke loose. Taking a vaccine, at the start of what was a relapse, was akin to putting petrol onto a fire. The guy at the time told me off the record that 'we were just told to prioritise this jab, we didn't realise you were in a relapse'. As I say, I had highly active MS and had reported new symptoms. I then got "too many lesions to count." and spent five days in a neuro ward. All I am saying is be really careful WHEN you take these jabs. I have had three, and now have concerns about them (even when this is not allowed to be discussed in the press/parliament) - I won't be taking any more.
I had mono 2 years ago. After around 2 months from mono got first Covid vaccine. Few months later first MS symptoms appeared. I think it was because of EBV. In my family there were no MS cases. Anyway MS is a monster. Maybe people with RRMS dont see it at the beginning but for those with PPMS this illness is like a nightmare :-(
First.. very healthy.. active adult. Working out 6 days a week before Covid. My second Covid booster was Pfizer. A few days after I received I had the worst sore throat… one that I recall I had when I had mono as a teen. It lasted a few days. Then for months after never felt right.. finally had weird stroke like symptoms .. went to hospital. 10 months after the booster at 56 I was diagnosed with MS. My neurologist said my MS was odd.. not normally what is seen on MRIs… even had more blood work so ensure it wasn’t something else… but it’s MS. I am on DMT… I feel good/back to working out consistently. I know I have no way to prove the booster caused… but hard not to see the correlation.
Also my lesion were new…
This is why we need to look at big data to see if there is a pattern across groups or populations of people.
Again, thanks for having the maturity/vision to even ask the question... at a time when seemingly ANY scrutiny is shut down and deemed 'anti vax conspiracy theory.'
I had 3 vaccinations with no issues. Subsequently, when I caught covid last year, I started experiencing MS symptoms a few months after my Covid infection. I had fever and cough for a month during my covid infection. My brain scan showed lesions in Jan this year. Did Covid trigger my MS or did it reactivate my EBV infection I had 30 years ago? My mom had PPMS so I am genetically predisposed.
Taking about EBV, any chance of trial for TAF/ TVF? https://www.pnas.org/doi/10.1073/pnas.2002392117
Not sure if enough TAF / TVF gets into the CNS at high enough level to have an effect on EBV.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8166391/
This patient seemed to respond really well to TDF containing regimens
Unfortunately, we can't draw too many conclusions from a single case. This is why we need randomised controlled trials. I have been trying for 7+ years to get a HAART trial in MS off the ground with little luck. It is like banging your head against a brick wall.
Why do you think pharma companies are so hesitant to fund studies like this? Is it because so many of the potentially active agents are generic? I am frustrated that each next step in research is for incredibly costly drugs that haven’t been around as long. HAART is taken by millions daily! I do still think a study of MS incidence in people on PreP would be great--there are 70,000 people on PrEP in the UK. If you are right about the field hypothesis, there would a less than expected incidence of MS, right?
If they understand the latent/lytic phases of EBV infection and the MS immune dysregulation, they will support yr trials. Don’t give up, Prof G!
How about nose spray/ nanoparticles for TAF? They will be better routes to CNS?
I was diagnosed shortly after having the 2nd dose. Exactly as you said though, my MRI had old lesions and active ones, suggesting that my MS predated the pandemic/vaccine. My neuro said it was more likely 'triggered' by a miscarriage I had.
I had an illness last year that I suspect was covid (I’ve never tested myself for covid) that made all my underlying MS symptoms go away. I suspect it was covid because I lost my taste and smell. It felt like my immune system was busy fighting an actual invader and stopped its low level assault on my mobility. It was the best feeling! Losing my test and smell was annoying but the trade off of being able to run and jump were worth it. Not that I care to run or jump but I had a noticeably fantastic horseback riding experience while it was happening.
I’ll add that I’m unvaccinated
I see what you did there and yes, it's a thing.
Everytime my system gears up to fighting "something new" I get a temporary reprieve in fatigability so much so I've been wondering how i can recreate it periodically safely.
I wonder too how to replicate that. I definitely would. Though I highly doubt it’s possible to consistently trick the body without adaption eventually.
There has to be a way.
Bee venom, etc. Snake venom. ...Kefir !?
At the minute walking is helping. Though im not sure if it's helping MS as such- but its helping getting rid of suicidal ideation.
I'll take whatever.
Did you take any anti-viral for your “covid” illness? Curious what caused yr improved mobility.
I didn’t take anything, no OTC meds or RX
Hi. I have a question. If there is a good chance MS is not autoimmune disease, why are we treating it with immunosuppressants.
Thanks
Because they work ;-) All effective DMTs, with the exception of teriflunomide reduce memory B-cells or stop them trafficking into the CNS. Memory B-cell is the cell where latent EBV resides. Teriflunomide on the other hand is antiviral.
Why can't we combine for example tysabri/aubagio?
Or tysabri/ocrevus => mav/ aubagio?
The unpublished evidence is surely crucial here - there are a large amount of pre-print studies which, strangely, never appear in the mainstream journals these days, particularly on post-vaccination autoimmunity (as a trigger for latent autoimmunity or potentially causative). Are you perhaps unaware of the extent of the unpublished evidence? Recent papers have included alarming rises in Guillan-barre Syndrome cases, Vasculitis, Type 1 Diabetes and many more auto-immune conditions, not to mention MS. Economist Edward Dowd has evidenced huge numbers of vaccine injuries/huge rise in disability in healthy working adults, based on independent US health insurance data.
Yes, I am aware of this data. I am saying COVID-19 increases your risk of getting autoimmune diseases, but just not MS. The point I am making is MS is the outlier. Why?
COVID-19 or COVID-19 vaccination? I would say the answer is obvious if you look at the voluminous preprint research on this - MS is not the outlier it seems. This Saudi study looked at the possible risk factors for MS onset post vaccination: https://www.cureus.com/articles/137279-new-onset-multiple-sclerosis-post-covid-19-vaccination-and-correlation-with-possible-predictors-in-a-case-control-study#!/
From clinical experience, so many people also put exacerbations down to their MS, rather than vaccination - I know someone with MS who is in hospital with life-threatening GBS (post-vaccination). It is strange the extent of the correlation between vaccination roll-out and new/worsening MS symptoms. Is it just that the data is not being published here?
The Saudi study is too small and likely to be an outlier. You really need very large population-based studies to draw any conclusions. MS does not develop in days or months; it take years for MS to develop. The idea that COVID-19 causes MS is not congruent with current knowledge. Much more likely is that COVID-19 triggered an attack in someone who had asymptomatic MS or RIS (radiologically isolated syndrome) already. This is very different to causing MS. This is the point I am making in this newsletter. The data for the vaccine is much less convincing than that for COVID-19 itself. An infection is a much stronger immunological stimulus than a vaccine.
Really good newsletter! I wondered what your thoughts are on her being post-natal? Both me and my sister’s MS became evident within a year of having babies, I wondered if the biological stress/strain on the body (eg chronic sleeplessness) would that be enough to trigger lesion activity or EBS reactivation? Or are the hormones a factor, or the immune system changes in pregnancy?
Yes, pregnancy is a state of relative immunosuppression and post-partum is associated with reversal of this state. The latter may explain the risk. Relapses are more common post-partum, which may explain why many women present with their first attack in this period.
My first symptom (optic neuritis) occurred when my first born was 7 months old. I had about 3 bouts. MS not mentioned thankfully and I went on gave another baby. MS diagnosed at 35.
Possibly childbirth just coincides with typical age of onset - but wondering if hormones or physiological stress might trigger or influence severity of relapse which in turn causes symptoms for diagnosis?
Lynne and Karen, I have read so much about onset of symptoms after childbirth. Same here. Carrying a child is stressful! 🌷
What’s interesting in my case
I’ve had 5x Covid jabs so am up to date
Since 2020 I have not had Covid (and tested multiple times when sick) and my overall infections have been very low (can count on one hand)
I find it fascinating that my wife and kids got Covid and I didn’t in the same household. Twice! Someone I’m immune to it
Thank you I have been learning so much from your blog I have MS
I have a quick question was on gilanya 10
Then occrevas since 2017
I now have an Demodex infestation affecting my eye ears.
Have you ever heard of this.I have worked with many dermatologists they can not make them go away.
I stopped occrevas last June
Been paying for my own blood test and my Gia and igg are still only 30,400
Can you help,me
Judith Normandin
No I am not aware of mite infestations and anti-CD20 therapy. I am not sure antibody responses are that effective against extracellular parasites. Saying this Demodex is associated with immunosuppression, particularly in people with diabetes. I assume you have been screened for diabetes.
Never had covid. Had two vaccines in the very beginning. Developed chron’s. Who knows….
Great article! I too blamed covid for deteroriation of my MS, but I believe it was 2 month od battling pneumonia which caused my worsening (despite clean MRI), and poor choice of antibiotics by my doctors, not covid itself.
I’ve had no issues with any vax. I had Covid last fall (late for booster) and ended up having a *new* relapse and an uptick in an old area of damage (both brainstem). However, the lesion for the new relapse was seen on imaging August, quite small and no symptoms yet. Covid definitely caused some sort of generalized inflammation (possibly EBV driven) - I’ve not had an MRI post to see what changes happened. I understand covid also reduces CD8+ T cells and am curious about your thoughts on how this might impact MS/treatments.
Not sure COVID-19 impacts DMTs in any way. But a reduction in CD8+ T-cells may increase your likelihood of having certain types of infections, in particular viral infections such as Zoster.
Or in my case, EBV. Which then seems to wake up MS again. Bye bye Mav stability! On to Kesimpta. I continue to wait for MS to get boring. 🤣
Can you not take more mav?
Too funny! It never gets boring, I don’t think. The gift that keeps on giving! 🌷