Research Talk - Prof. Gavin Giovannoni
MS neurologist, Prof. Gavin Giovannoni gives a talk, recorded live at South Devon Information Day 2018. He is an expert in MS prevention trials, and gives some fascinating insights into preventing MS in this talk.
Video: - YouTube
Interesting. The only problem for me is that pretty much none of the factors he talked about fit as causative factors for me. I found my original discharge summary from my first tests (MRI/LP/VEP) from 1997 the other day. Iād never noticed before but theyād checked for EBV antibodies, and I was negative. And I have no family members with MS (although autoimmunity runs rampant). The only definite is that Iām female.
I still love Prof G. Heās ace. I didnāt realise back when he was my neurologist just how amazing he was.
And even if only half of the cases of MS are preventable in the future thatās excellent news.
Sue
PJ
Thanks so much for posting this link.
Really fascinating copied the link and emailed it to myself for my MS folder.
Similar to Sue, Iāve never had EBV, glandular fever, relative with MS, smoked or obese.
But I am female, do live in the North of England and lived with a smoker for 38 years ( not my parents).
Would be very interested in joining Barts trial with my two daughters.
Seeing my Neuro next week, will speak to him about trial. Already on a few but the more the better with MS .
Jen
. Very interesting . It seems as a female born in the era rife with passive smoking , born in May and with a father with MS together with the bad luck element I always had a higher risk. Hopefully my siblings and 2 daughters ( one born late April but due in May ) will escape from getting it. Perhaps I should have sunbathed more and had more exotic holidays . In the mean time I think I will encourage them all to take their high dose vitamin D
Prof. G. did say that āā¦ the vast majority of people with a full-house of risk factors donāt get MS. Therefore bad luck must have something to do with it.ā
Well i never ever knew i had EBV. when i first got sick back in 2006 september I was signed off work.
I got know where the neurologist knew it was neurlogical but not what it was. although he always thought MS.
Anyway i decided to visit Breakspeare Clinic as Dr munro was an all rounder and they looked at lots of things including lymes etc.
I had 35 vials of blood taken over a course of 2 months and a lot were sent away.
She gave me a differential diagnosis of MS and a co infection of lymes.
BUT what she did say was you have a high factor >95 for EBV its not active and therefore it should be less then <5. I had EBV at some point. She said it was a puzzle that it was so high it really shouldnt be and showed something was going on to make it that way. I have the results i can copy them. Also there was another weird virus showing up too which was a common human virus i had never heard of.
So yes I did have EBV no idea when. Its one of those diseases mistaken for flu. Dr Munro was quite worried about the test results and wrote to my GP but well they did nothing about it.
Typical.
ALSO years back i did a lot of research myself and found if you had an auto immune disease you could be prone to MS. I belonged to a group in the states, and I decided to conduct a study who had Endometriosis and developed MS? We had 250 women within a couple of weeks all had endo, and all had MS. I did google and found a little pocket of researches looking at endo and the incidences of MS, Lupus and RA.
Also they say more up in scotland in the highlands where the deer and the sheep roam. Is it a case of the TICK? Are more people prone to being bitten by ticks carrying lymes and could that also be a trigger.
I think its time more money was spent.
Even if there is the slightest link with EBV and developing MS then why not get a vaccination programme up and running.
I am not being funny i never knew i had EBV so how many people on this group have had EBV and yet never knew it.
Maybe the powers that be should be investigating that and doing some blood tests. I had it in black and white >95, at the time i was really poorly Dr Munro even said its no wonder your so poorly you are fighting something.
I am sure its been active since because every now and then i seem to suffer a hit of fatigue, and sore throats and my glands under my neck swells up.
Just watched the video of the talk by Prof. G. The more he said the more sceptical I became - Unless you provide cast-iron empirical evidence for your conclusions then your pronouncements are guesswork. Are girls/young women more likely to develop m.s. at a younger age compared to boys/young men because they āstart kissingā at an earlier age? Is the month of your birth really relevant or just an interesting? hypothesis? However what really surprised me was when he said that environmental factors were more influential than genetics - I think those of us with a family member with m.s. need a lot of convincing that genes do not play a part in our m.s.
Yes i did get bored a little my only interest was the EBV connection as i have read this more and more, and like i have said not everyone knows they have even had this virus so could be a lot more people who have had it.
Just like my checked women with endometriosis and i am sure it was about 250 who had it and MS.
I think the month of birth is bogus to be honest.
I have heard a lot of people say they think it is more down to environmental then genetics.
My understanding of all the various autoimmune disorders is that there are a number of factors that determine whether you will get a specific AI condition.
So, genetics, environment, viruses, geographic location, gender, vitamin and mineral uptake, smoking, etc, etc are all relevant. So what Prof G was saying was just that mononucleosis or EBV were more important than had previously been thought.
It is known that if you have one autoimmune condition, youāre more likely to get another. Iām alright, I think Iāve filled my dance card with everything Iām likely to get, with MS, AI thyroid disease, eczema and probable AI liver disease. But there are loads of us with MS + another: RA, Coeliac, Sjorens, Crohns, thyroid (over or underactive), Scleroderma, etcetera.
Sue
MS research update ā Cell therapy targeting Epstein-Barr virus tested in progressive MS ā 20 December 2018
I could possibly tick 50% of those boxes and the other 50% dont apply, so Iām none the wiser why I developed MS.
My sister has it and also my 1st cousin, so for me I think genes play a bigger part than anything else.
None of us have ever smoked or be classed as obese.
Young girls starting to kiss at an early age more at risk ??
This bit threw me because surely these young girls would be kissing boys of around the same age group ?
Also I was born in October, my sister December and cousin November, so therefor our mothers would be carrying us through the summer months where there would be higher amounts of Vit D.
So again Iām not that convinced about the pregnancy & Vit D bit, although I do take 5000iu of D3 myself, but only because my neuro suggested it when I was diagnosed.
However, on the flip side, I was always suffering from one thing or another when I was a kid, Iāve probably had every viral infection going, I use to have constant throat infections, eczema, Psoriasis, terrible mouth ulcers for years and years, so bad that very often my food would need to be liquidised.
It was an interesting video though.
Hi sue, yes it seems we are predisposed to have other auto immune diseases. I did find the link wth endometriosis and MS quite interesting, due to the fact Giovanni states MS is more prevalent in women. Not a lot of people realise endo is an auto immune disease. I did my study years back when i was first sick, i had read about it, so thought as i belonged to an all women group would find out, and there were a lot of women who had both.
I just found recent research with the link. Molecular Study Provides Basis of Risk of MS in Endometriosis
I also find the link with MS and EBV interesting too. 95% of people (upto) get it and many never know. I didnt yet mine was showing reactive even though it was latent or asleep. I found the paperwork yesterday i had the tests in 2012. Dr munro was linking it back then.
I also had another common herpes virus (no idea when), which can affect your eyes, and weirdly enough i wonder now if that was what happened in 2000 with my eyes. who knows. I never knew i had either virus although they are very very common. Eeek makes you wonder what we are carrying. I also found i had Aspergillus Fumigatus jeez, now my GP knew about all this as Dr Munro sent the results to her, and yet she did nothing. Weirdly enough i never had an issue with my chest but my husband did he had COPD, so whether he had AF as well who knows, but no idea how i would have been infected although we did travel in the swamps in brazil and hot steamy springs in USA lol.
You never know whats going on, after i had my blood panel done i was amazed at what they found, even high titers for RA. I remember my first Lupus test was positive, then six weeks later negative and they have never bothered about it since, yet my dad had it. Everyone of my female siblings or close cousins and daughters has THYROIDITIS, yet i dont. woo hoo lol.
I am sure one day it will come down to a virus triggering the disease it would make sense.
One day hopefully MS will be curable or at least a lot more manageable.
We need people like Prof G to keep thinking outside the box.
Very interesting so why are we not getting on and doing a study in this country.
Another strong link coming out to MS and Lupus is Chaetomium mold. My friend in the states they found she was contaminated by it through a damp house she lived in, and now she has MS, and her doctor in the states is linking it, as there is research to show there is a link with mylin sheath damage.
Her doctor believes it has caused her MS. She is still being treated for both. So again something else and environmental.
Whatās interesting to me is that the MS Trust page states that 90 to 95% of people are infected with EBV but not all have MS. This isnāt new, itās well documented that other factors are involved. And itās great that the research is being done.
But I tested negative for EBV antibodies when I was first tested for MS (I only realised this the other day when I found the original discharge summary). All the other MS tests were positive, MRI, LP, VEP.
So how the hell did I end up with MS? If nearly everyone has EBV and itās presence is one of the vectors that brings about MS, how does someone without it have MS?
Obviously it makes no flipping difference to me. You canāt exactly say I was misdiagnosed!! (I wish!)
Sue
Sue - the question that should be asked of Professor G is what percentage of pwms do NOT have the EBV virus. Often researchers become blinkered and obsessive and canāt consider that having spent many years on one specific line of research they may be heading for a brick wall. Iāve never been tested for any EBV antibodies - I think that the month of my birth is totally irrelevant as is the fact one parent was a smoker. My guess is the answer lies in our genes.
I tend to agree with Krakowian and believe that the genes are the key.
Maybe viral infections play a part by there being something within our genes that do not act ānormalā when dealing with such infections, as opposed to someone who has ānormalā genes .
If that makes sense ?
I also tend to agree with Krakowian and jactac too. I think that the bodies response to viruses triggers the immune system to attack the brain and spine but the route cause is a genetic predisposition to MS. Iām not aware I ever had EBV but I have had chicken pox, mumps, rubella, and whooping cough. Iām the only one of my dads three children to inherit his blood group too which may just be coincidence but could show that I inherited certain factors from him that my siblings have not . My sister has had EBV but does not have MS
Yes i agree. I dont think EBV causes MS at all, but it might well have a part to play in the road our genes take.
Its like M.E. it is triggered by stress and virus. Its a fact. My daughter got it by stress and pnuemonia. she was healthy until then.
The thing is any research is better then none, and maybe by unlocking one idea they may well stumble onto another more important one.
I think having MS is more likely down to a pre disposition of auto immune in a family. My family are very predisposed to auto immune diseases.
grandad parkinsons, dad lupus, nan, RA, all my sisters and neices have thyroiditis, my daughters and I had endometriosis. I have MS. Now i found out by accident i had EBV, could this have been the factor which sent my auto immune onto the path of MSā¦i also had a ton of vaccinations for the forces. could this have been an added trigger. Montel williams believes so and others do too.
I think the more the dig maybe the bigger the chance of finding out why and get a cure.
Just because someone has had the antibodies for EBV doesnāt mean they will get MS, was the antibodies still reactive i think thats the key. Mine was it was >93,(it showed i HAD it but it was not active) it should have been less then 5. so maybe that is a clue. Dr munro said to me the high rate shows something is being stirred up in your system and no wonder you feel poorly, so was or is that the key, a combination to the lock to get MSā¦what is the trigger? Perhaps they need to collect all the people with reactive bodies and see where there is a difference to the people who have the antibodies but are behaving correctly.
there is an answer out there its just finding it.
I dont think i would poo poo any theory as there is an answer to be had and sometimes it is just stumbled on.
Genes yes we have it our familyā¦but why me out of a very large family be the only one to get MS? Yet the others have other auto immune diseases thankfully i dont have like RA, and lupus, and parkinsons (which they now belive is auto immune) and thyroid auto immune problems.
Thank you for posting that video. Very interesting. I am a smoker and I have psoriasis as well. None of my family have MS. I also have endo but not sure if iāve ever had ebv.