I worked in Lisbon in the late 1990s and can recommend a visit to Sintra and a visit to a Fado Club.
I can’t really understand why two MS Societies are flying 60 neuros / academics / administrators half way round the world. Couldn’t this meeting have been bolted on to the relatively recent ACTRIMS and AAN meetings?
More depressing is that I attended an EBV / MS workshop you organised in c.2008 in London. Nothing has really moved on. There is never a sense of urgency in the field of MSology. The meeting in Lisbon is the usual talks about talks. Nothing concrete will emerge - maybe a commitment to meet up again in 5 years time to go over the same ground.
Pharma will eventually come up with an EBV vaccine and possibly an anti-viral which has good effect against EBV. Some MS centre will then do a trial to see if these therapies have any impact on those with MS. As better treatments which target the real MS (ebv infected B cells) become available (Car T cells, anti-virals) the need for an ebv vaccination programme to reduce the risk of getting MS will become less important.
Enjoy the custard tarts and port.
PS if I see that wretched ‘Sir Bradford-Hill: Criteria for Causation slide again’, I’ll throw myself off London Bridge.
If environmental impact was paramount, all these meetings would be on zoom, or similar. As it is, most participants seem to perceive meetings in exotic locations as a perk of the job and meetings per se, as an opportunity to meet up with the friends made at earlier meetings. I even heard of a orthopaedic meeting being held in a ski resort! That’s not to say that making friends at conferences is pointless. My own research on MMP9, MMP2 and TIMPS in the lungs of neonates was saved by the chance meeting of my research supervisor and a physician at a respiratory conference.
Agree. Regards Zoom etc. If they care so much about the next generation it must be shown with their attitude towards the Greater community. I despair of these MS societies. All they’ve done since my diagnosis 20+ years ago is tell me a cure is around the corner. Grrrr
Like you I’m 20+ years in and have lost track of all the promises made by the MS societies (stop MA, repair the damage, remyelination….).The truths about MS:
- neuros continue to get their salaries + payments for work done for pharma;
- big pharma continue to make $billions;
- MS societies continue to raise $millions (tens of millions);
- MS research teams keep expanding;
- MSers keep getting more disabled.
The link between EBV and MS was first identified in the early 1980s. An anti-viral which might shut MS down won’t ever get to market as there’s too much money at risk. Long term immunity-suppressants bring in the money.
I contacted the MS Trust asking why they weren’t mentioning the Mike Pender paper (https://insight.jci.org/articles/view/124714?utm_campaign=cover-page&utm_content=short_url&utm_medium=pdf&utm_source=content) and was told that MS is an autoimmune illness, so it was irrelevant. I told them to watch this space and they didn’t reply and they’re still not up to date. If it weren’t for their decision tool, they would have as much use as a chocolate fireguard. These are the charities which should have been supporting the researchers with novel ideas for the last 2-3 decades. If they had, we might have an effective antiviral treatment by now and I might not have the disability that has developed over the last 18 years.
Ian, Helen - you have said it all. I can’t tell you how frustrated and irritated I am with MS Societies’, may I use the term propaganda? We are all on our bicycles or running marathons. (Think direct to consumer drug advertising on the television in the states..I roll my eyes.) There is huge money to be made. As I bang on: treat MS like cancer!
I'm sure the attendees would say that's chump change in the world of environmental impact. I hear that we as patients - since we aren't already wedged between a rock and a hard place firmly enough and don't have anything else to make us feel like dreadful burdens to family and society - should probably be choosing our MS treatment at least partially based on how much medical waste it generates.
You are my spirit animal! I know this wasn't meant as comedy (or maybe it was) but I love you for typing every single word that you did and I am here cry laughing. Not because what you said was wrong, but because you had the balls to say it! I am 58 years old and MS and the research and the MS Societies can just miss me at this point. I am so done with the waiting. I'll be in an urn placed somewhere in my son's house, maybe the back of a closet, before there will be any advancement or treatment in MS that will have any meaningful impact. Thanks for putting a smile on my face.
PIsh-posh. Well I'M certainly not falling for any of that clap-trap. I'VE been busy backpacking over the large Tecfidera pill spanning a stream in a lovely forrest setting
I find this very interesting Prof G. My mother suffered with MS in the 80s, 90s with no treatment options. My own MS is much better managed than hers ever was. But I have two daughters and beyond Vit D, I can’t advise them of anything tangible to reduce their risk in this lottery. An EBV vaccine for those with family history or other indicators would be useful and I’d happily have gone private for it. But my girls are in their 20s now so I guess that ship has sailed. No idea if they’ve had EBV as it’s not something that gets routinely called out.
My suspicion is that MS is not common and visible enough for a vaccineto get high enough uptake to impact the numbers in a meaningful way... Even with a very visible pandemic, there were enough pro plague morons out there, after all (and it's repeating with measles in the US).
So (and out of pure self interest), I would prefer focus on a cure...
If you select infants with a parent with MS, their rate of conversion to having their own MS is 1:100. It would need a good medical statistician to do the power calculation to calculate the ideal n, but I suspect 10,000 would seal the deal with the absence of circa 100 cases.
The problem is the lag phase from EBV exposure to MS and the observation that about 60% of subjects are EBV+ve by the time they reach high school. Then there is vaccine hesitancy etc. We've been down this path before, and it is not feasible.
Following my experience with CoVID vaccinations I’ve become vaccine hesitant. I’m still waiting for an answer from Pfizer why they chose to make CoVID vaccine from pathogenic spike protein mRNA instead the standard benign surface molecules. There may be a genuinely good reason, but their long silence speaks volumes. But, if there were an EBV vaccination available for my daughter, my hesitation would evaporate, even if the chances of it saving her from going through what I’m going through were slim. If a vaccine were introduced, children of pwMS would be more likely to avail their children of it. It would be a really big real world cohort study. I think the ultimate problem is that Pharma are making a fortune out of us and healthcare systems around the world. There is a perverse disincentive to find a cure or prophylactic one off treatment. Take depression for example. Pharma offer lifelong daily treatments. Mind Australia (a charity) treat with Psychedelic Assisted Therapy (PAT) and induce either sustained remission or cure for most. Are Pharma pushing governments around the world to permit the 5HT2A receptor agonists used for PAT, but illegal in most jurisdictions? No, it’s not in their best interests, so why would MS be any different? Yes, it’s going to take circa 30-40 years to see if EBV vaccination prevents MS but if we delay looking for another 10 years it will be 40-50 years before we have an answer. Remember, every decade we delay is another 620,000 pwMS. Let’s get on with prevention of glandular fever and MS prevention can be an added perk discovered after I’m long gone. Hopefully, if I have any, my grandchildren will be protected. Everybody in the know can then disingenuously pretend to be shocked at the disappearance of MS and other “autoimmune” conditions and make condescending remarks with the aid of their retrospectoscope. And positive remarks comparing Prof G to Leonardo DaVinci, although he beat Newton to Newton’s of motion by 200 years, so I hope it doesn’t take that long.
If we (as a generation) miss any opportunity to protect the next generation from this insidious disease we are failing humanity as a whole. I spent 35 minutes this morning on my stomach on the kitchen floor. after attempting to pick something up, panicking, struggling, nearly crying until I finally got some traction and hauled myself up on a chair. If that’s my legacy and nothing changes through research to eradicate MS by studying ‘us’ then everything we go through is for nothing.
That sucks and I´m sorry that your day began in such a frustrating way. MSers thankfully seem to have a stubborn survival streak. Hopefully your day can only get better.
I’m sorry, that’s a frightening situation to be in. I can absolutely empathize, turning and falling not gracefully. This is not a cured disease for most of us.
You can’t let the fear take over otherwise we wouldn’t do anything, pushing on is the only option. It certainly made me think about what would happen if I found myself in that situation and couldn’t contact anybody so I’m trying to put some measures in place now. I’m in the UK and there are services you can sign up to with Emergency 24 hour cover who can access your home with an emergency key. It’s just another stage another step in a different direction onwards and upwards.😀
Good idea. In the states here. I have an emergency “necklace” to call for help. But yours sounds better. Mine calls ambulance… I have become so aware about how I move, it’s demoralizing! Rollater in the house is the safest. Much safer than a stick. (Or my clumsy balletic adventures turning….) But make no mistake, I am grateful I’m still getting around. Carefully!…☺️
Like so many diseases MS is obviously caused by an unholy alliance of many factors. We cannot control them all , but we if can vaccinate against EBV, then we absolutely should !
MS sucks away money from suffers, carers, and even governments in lost tax on lost earnings. This should make vaccination a priority on every level.
Please keep advocating and promoting this . Thank you so much.
im female but ive got no family history, was born edging into autumn (aug 31), brought up in sunny kenya, have always been skinny, dont smoke, no solvents ...
i think reducing obesity, smoking and air pollution will have much bigger positive effects than reducing ms - definitely support!
If you remove the EBV dominos, the others won't fall, and you won't get MS. There are models, for example, the Swiss cheese model, the pie causation model, etc. I prefer the falling domino model because it effectively conveys the concept that EBV is necessary but not sufficient for developing MS.
Correlation does not equal causation. It could be like finding fire fighters at fires. If you remove the fire fighters you won't prevent fires but stop them being extinguished. 'vaccines' don't remove 'virus' or prevent it. They just cause inflammation which is labeled 'antibodies' to 'virus'. Basically they would just move MS to another definition.
EBV ticks 8 out of 9 of the criteria of causation. The data is pretty clear: people who don't have EBV are protected from getting MS. This is not a correlation; it is pretty black and white, and that is before we discuss other criteria. We need to do an EBV vaccine study to prove causation.
Fires that don't have fire fighters don't rage out of control. The proof is that there is always fire fighters when there is a huge fire. If we could just get rid of the fire fighters there would be no raging fires.
Keep advocating Prof G! I dearly wish my children could access an EBV vaccine. As I've said before, when I was diagnosed in 1999 i was asked whether I had had glandular fever (yes aged 11). 25 years later and we're still talking about EBV!!! Why no urgency? Because it affects women more than men? Because it is stigmatised and hidden?
I most certainly won’t be part of the generation that failed my own! I was diagnosed in 2014 and within weeks of diagnosis I began campaigning for HSCT to be more widely available on the NHS; I could do nothing as an MSer to help prevent MS, but I could campaign on behalf of the most effective treatment. When I requested HSCT in the UK in 2014 that would have made me UK treated patient #10. Now 11 years later the UK have treated around 425 patients with HSCT and another 500 have gone overseas. Close to 1,000 UK MS patients are now stabilised or even improved because of the Forum that we patients set up ourselves In 2015. As patients we need to look to the medics and scientists to work out how to prevent MS, but we certainly haven’t let down those already diagnosed. 🙂
The objectives of the meeting are appropriate, but I hope to be able to disagree with your statement, “As time crawls by, I think we will be known as the generation that has let the current and next generation of people with MS (pwMS) down”. You’ve been citing EBV as the key aetiological factor for 2 decades, so it is to be hoped that, now the EBV factor is partially agreed, our generation won’t be as dim as our parents’ generation. Even if an EBV vaccine doesn’t prevent MS, our generation is at least not turning a blind eye to the (in my opinion) obvious - they asked for your ideas, rather than shunning the renegade (meant as a complement). Ultimately, EBV vaccination may not prevent MS (I think it will). Progress is not made by stagnation, but by activity. Just consider the Kurt Lewin’s effect. Even if it turns out to be a dead end, we won’t find out by ignorant inactivity and there are extremely likely to be unintended benefits to stamping out EBV. There may be some negative unintended consequences - eg. More promiscuity amongst teenagers, no longer impeded by worries about glandular fever, but I don’t imagine many hormonal teenagers worry about EBV carriage when they’re going for a first snog. If you target 13 year olds (the youngest teens), their seroconversion rate is about 60%, so earlier intervention is likely to produce a bigger effect size. I would add it to the primary imms course in babies. Maybe 8/52. Even the MMRV is too late to prevent the majority of Chicken Pox. The VZV component needs to be earlier. Lots of people will catch human herpes viruses before the age of 12 months.
Very interesting domino effect. Given the solvents and air pollution, I was expecting major stress and lack of sleep to be at a similar level. Would like to know your opinion on this :)
A thought occurred to me recently, given I have had a number if blood tests done over the last few years. MCV, MCH, MCHC stayed elevated when I was treated with B12 and methylfolate, but my elevated homocysteine came down. Lymphocytes have stayed elevated as well. My functional medicine doctor thinks I have a viral infection and has ebv as a possibility. My symptoms of neuropathy come and go for a few months at a time and I wonder if that's due to a reactivation of ebv.
I wish I had curious doctors…how many of us have severe neuropathies? I have given up feeling my feet. Numb and spastic, an awful combination. Perhaps EBV?
The best way to find a curious doctor is to find a functional medicine doctor. I'm very fortunate that my family MD shares a practice with a functional medicine doctor. I recently did a neuralzoomer test through him, it's designed to pinpoint specific viral infections. He wants to see if my recent return of neuropathy is due to a reawakening of something like ebv. His goal since I first started with him has been to remove all inflammation from my body. Given I only have occasional neuropathy and no disability I do think his approach is working. I currently do a bit monthly IV therapy of glutathione and selenium to deal with inflammation and oxidative stress. When that ends we're switching to helixor therapy to try and render my viral issue dormant. It's fascinating stuff, but I will admit there's a cost.
I'm quite fortunate, I get these bilateral vibrations in my jaw and hands 4 or 5 times a week for a few months, then they go away for a few months and then they come back, it's a cycle and I wonder if it's something viral that flares up. Otherwise is just have the odd cramp in my right calf first thing in the morning. But my L5/S1 vertebrae are also now self fusing as the disc is completely herniated so it's hard to say if the calf cramp is neurological or structural. I.also have a half dozen other discs that are bulging.
Sounds like you have a lot going on, and it doesn’t sound easy. My feet have been numb now for well over a year. I wonder how many of us have peripheral neuropathies? I wish there was something that would help. Balance is tough enough. Take care, Kevin.
I disagree with your opening statement that your generation will be remembered as one that let current and future generations down. Your generation will be remembered as one that persevered with MS and improved treatments and understandings over a lifetime of work.
The focus now on EBV is a good example on persevering and focus on the data. The massive cohort from the US DOD had enough in the numerator and denominator to prove causality. previous studies were small….but all the prior work has laid the foundation.!
Others like Dr Hauser persevered and focused on treatments that have been, literally, life changing for many - including me.
Your generation has embraced social media and sharing your knowledge. This is all a big deal and I give you my heart felt gratitude. I choose to think of your generation as the ones who chose to elevate MS and create change.
I only recommend vD3 4,000U per day for bone health. If you are vegan, there is a cocktail you need, but that is based on the fact that a vegan diet is deficient and many important micronutrients.
why is coffee a risk factor for MS? I saw this on your slides. Am I interpreting that correctly? If so is coffee not good for you once you have MS? I drink a lot of coffee due to fatigue
Have you considered MS could be caused by other viruses as well as EBV? Making one bet on EBV seems to be a massive gamble if other viruses are involved
What do you think of Julian Gold not sharing your view on vaccines for MS based on EBV developing for evolutionary reasons and knocking EBV out of the equation could cause other unforeseen problems
That is science. Without data, we have opinions. The only way to test the theory is to vaccinate and observe the results. This same concern happened with VZV, and the hypothesised problems did not materialise after the vaccine was launched.
I worked in Lisbon in the late 1990s and can recommend a visit to Sintra and a visit to a Fado Club.
I can’t really understand why two MS Societies are flying 60 neuros / academics / administrators half way round the world. Couldn’t this meeting have been bolted on to the relatively recent ACTRIMS and AAN meetings?
More depressing is that I attended an EBV / MS workshop you organised in c.2008 in London. Nothing has really moved on. There is never a sense of urgency in the field of MSology. The meeting in Lisbon is the usual talks about talks. Nothing concrete will emerge - maybe a commitment to meet up again in 5 years time to go over the same ground.
Pharma will eventually come up with an EBV vaccine and possibly an anti-viral which has good effect against EBV. Some MS centre will then do a trial to see if these therapies have any impact on those with MS. As better treatments which target the real MS (ebv infected B cells) become available (Car T cells, anti-virals) the need for an ebv vaccination programme to reduce the risk of getting MS will become less important.
Enjoy the custard tarts and port.
PS if I see that wretched ‘Sir Bradford-Hill: Criteria for Causation slide again’, I’ll throw myself off London Bridge.
The London EBV meeting was in early 2006.
If environmental impact was paramount, all these meetings would be on zoom, or similar. As it is, most participants seem to perceive meetings in exotic locations as a perk of the job and meetings per se, as an opportunity to meet up with the friends made at earlier meetings. I even heard of a orthopaedic meeting being held in a ski resort! That’s not to say that making friends at conferences is pointless. My own research on MMP9, MMP2 and TIMPS in the lungs of neonates was saved by the chance meeting of my research supervisor and a physician at a respiratory conference.
Agree. Regards Zoom etc. If they care so much about the next generation it must be shown with their attitude towards the Greater community. I despair of these MS societies. All they’ve done since my diagnosis 20+ years ago is tell me a cure is around the corner. Grrrr
Helen,
Like you I’m 20+ years in and have lost track of all the promises made by the MS societies (stop MA, repair the damage, remyelination….).The truths about MS:
- neuros continue to get their salaries + payments for work done for pharma;
- big pharma continue to make $billions;
- MS societies continue to raise $millions (tens of millions);
- MS research teams keep expanding;
- MSers keep getting more disabled.
The link between EBV and MS was first identified in the early 1980s. An anti-viral which might shut MS down won’t ever get to market as there’s too much money at risk. Long term immunity-suppressants bring in the money.
I contacted the MS Trust asking why they weren’t mentioning the Mike Pender paper (https://insight.jci.org/articles/view/124714?utm_campaign=cover-page&utm_content=short_url&utm_medium=pdf&utm_source=content) and was told that MS is an autoimmune illness, so it was irrelevant. I told them to watch this space and they didn’t reply and they’re still not up to date. If it weren’t for their decision tool, they would have as much use as a chocolate fireguard. These are the charities which should have been supporting the researchers with novel ideas for the last 2-3 decades. If they had, we might have an effective antiviral treatment by now and I might not have the disability that has developed over the last 18 years.
Hmmm. Thanks for this.
We’ve every right to feel cynical about the MS societies. It’s the smaller MS charities that care more about the individuals.
Ian, Helen - you have said it all. I can’t tell you how frustrated and irritated I am with MS Societies’, may I use the term propaganda? We are all on our bicycles or running marathons. (Think direct to consumer drug advertising on the television in the states..I roll my eyes.) There is huge money to be made. As I bang on: treat MS like cancer!
I'm sure the attendees would say that's chump change in the world of environmental impact. I hear that we as patients - since we aren't already wedged between a rock and a hard place firmly enough and don't have anything else to make us feel like dreadful burdens to family and society - should probably be choosing our MS treatment at least partially based on how much medical waste it generates.
You are my spirit animal! I know this wasn't meant as comedy (or maybe it was) but I love you for typing every single word that you did and I am here cry laughing. Not because what you said was wrong, but because you had the balls to say it! I am 58 years old and MS and the research and the MS Societies can just miss me at this point. I am so done with the waiting. I'll be in an urn placed somewhere in my son's house, maybe the back of a closet, before there will be any advancement or treatment in MS that will have any meaningful impact. Thanks for putting a smile on my face.
Re the MS societies: are you waving and smiling on your mountain bike and running 10Ks like I am?
PIsh-posh. Well I'M certainly not falling for any of that clap-trap. I'VE been busy backpacking over the large Tecfidera pill spanning a stream in a lovely forrest setting
Lol. Good one! I have to keep some sense of humor, or I can go to the dark side. Ok, I’m off to my 5k! That’s all I can do now!
Very well put; I agree with you on all the points you raise.
I find this very interesting Prof G. My mother suffered with MS in the 80s, 90s with no treatment options. My own MS is much better managed than hers ever was. But I have two daughters and beyond Vit D, I can’t advise them of anything tangible to reduce their risk in this lottery. An EBV vaccine for those with family history or other indicators would be useful and I’d happily have gone private for it. But my girls are in their 20s now so I guess that ship has sailed. No idea if they’ve had EBV as it’s not something that gets routinely called out.
My suspicion is that MS is not common and visible enough for a vaccineto get high enough uptake to impact the numbers in a meaningful way... Even with a very visible pandemic, there were enough pro plague morons out there, after all (and it's repeating with measles in the US).
So (and out of pure self interest), I would prefer focus on a cure...
Oh Prof G, don’t even mention the measles fiasco!! The states are insane. But, vaccines!!
Texas, the leader!
If you select infants with a parent with MS, their rate of conversion to having their own MS is 1:100. It would need a good medical statistician to do the power calculation to calculate the ideal n, but I suspect 10,000 would seal the deal with the absence of circa 100 cases.
The problem is the lag phase from EBV exposure to MS and the observation that about 60% of subjects are EBV+ve by the time they reach high school. Then there is vaccine hesitancy etc. We've been down this path before, and it is not feasible.
Following my experience with CoVID vaccinations I’ve become vaccine hesitant. I’m still waiting for an answer from Pfizer why they chose to make CoVID vaccine from pathogenic spike protein mRNA instead the standard benign surface molecules. There may be a genuinely good reason, but their long silence speaks volumes. But, if there were an EBV vaccination available for my daughter, my hesitation would evaporate, even if the chances of it saving her from going through what I’m going through were slim. If a vaccine were introduced, children of pwMS would be more likely to avail their children of it. It would be a really big real world cohort study. I think the ultimate problem is that Pharma are making a fortune out of us and healthcare systems around the world. There is a perverse disincentive to find a cure or prophylactic one off treatment. Take depression for example. Pharma offer lifelong daily treatments. Mind Australia (a charity) treat with Psychedelic Assisted Therapy (PAT) and induce either sustained remission or cure for most. Are Pharma pushing governments around the world to permit the 5HT2A receptor agonists used for PAT, but illegal in most jurisdictions? No, it’s not in their best interests, so why would MS be any different? Yes, it’s going to take circa 30-40 years to see if EBV vaccination prevents MS but if we delay looking for another 10 years it will be 40-50 years before we have an answer. Remember, every decade we delay is another 620,000 pwMS. Let’s get on with prevention of glandular fever and MS prevention can be an added perk discovered after I’m long gone. Hopefully, if I have any, my grandchildren will be protected. Everybody in the know can then disingenuously pretend to be shocked at the disappearance of MS and other “autoimmune” conditions and make condescending remarks with the aid of their retrospectoscope. And positive remarks comparing Prof G to Leonardo DaVinci, although he beat Newton to Newton’s of motion by 200 years, so I hope it doesn’t take that long.
Sample sounds about right (did not do the calculation though) but be prepared to wait 3-5 decades...
And it does not really address the issue I was outlining, even a 1% risk is not salient enough.
If we (as a generation) miss any opportunity to protect the next generation from this insidious disease we are failing humanity as a whole. I spent 35 minutes this morning on my stomach on the kitchen floor. after attempting to pick something up, panicking, struggling, nearly crying until I finally got some traction and hauled myself up on a chair. If that’s my legacy and nothing changes through research to eradicate MS by studying ‘us’ then everything we go through is for nothing.
That sucks and I´m sorry that your day began in such a frustrating way. MSers thankfully seem to have a stubborn survival streak. Hopefully your day can only get better.
I had a good laugh at myself afterwards
I’m sorry, that’s a frightening situation to be in. I can absolutely empathize, turning and falling not gracefully. This is not a cured disease for most of us.
You can’t let the fear take over otherwise we wouldn’t do anything, pushing on is the only option. It certainly made me think about what would happen if I found myself in that situation and couldn’t contact anybody so I’m trying to put some measures in place now. I’m in the UK and there are services you can sign up to with Emergency 24 hour cover who can access your home with an emergency key. It’s just another stage another step in a different direction onwards and upwards.😀
Good idea. In the states here. I have an emergency “necklace” to call for help. But yours sounds better. Mine calls ambulance… I have become so aware about how I move, it’s demoralizing! Rollater in the house is the safest. Much safer than a stick. (Or my clumsy balletic adventures turning….) But make no mistake, I am grateful I’m still getting around. Carefully!…☺️
Like so many diseases MS is obviously caused by an unholy alliance of many factors. We cannot control them all , but we if can vaccinate against EBV, then we absolutely should !
MS sucks away money from suffers, carers, and even governments in lost tax on lost earnings. This should make vaccination a priority on every level.
Please keep advocating and promoting this . Thank you so much.
True.
Well put!!
great ambition
what about those that dont fit the dominos?
im female but ive got no family history, was born edging into autumn (aug 31), brought up in sunny kenya, have always been skinny, dont smoke, no solvents ...
i think reducing obesity, smoking and air pollution will have much bigger positive effects than reducing ms - definitely support!
EBV - you have to be infected with EBV to get MS. Prevent EBV infection and you prevent EBV.
youve said this before anout ms - and i think youre probably right.
do the dominoes complicate yr big argument?
thats my question
If you remove the EBV dominos, the others won't fall, and you won't get MS. There are models, for example, the Swiss cheese model, the pie causation model, etc. I prefer the falling domino model because it effectively conveys the concept that EBV is necessary but not sufficient for developing MS.
Correlation does not equal causation. It could be like finding fire fighters at fires. If you remove the fire fighters you won't prevent fires but stop them being extinguished. 'vaccines' don't remove 'virus' or prevent it. They just cause inflammation which is labeled 'antibodies' to 'virus'. Basically they would just move MS to another definition.
https://odysee.com/@InconvenientTruth:6/The-final-refutal-of-virology:6
EBV ticks 8 out of 9 of the criteria of causation. The data is pretty clear: people who don't have EBV are protected from getting MS. This is not a correlation; it is pretty black and white, and that is before we discuss other criteria. We need to do an EBV vaccine study to prove causation.
Fires that don't have fire fighters don't rage out of control. The proof is that there is always fire fighters when there is a huge fire. If we could just get rid of the fire fighters there would be no raging fires.
No IMHO as everyone with EBV doesn’t get MS so the other dominos are important.
Keep advocating Prof G! I dearly wish my children could access an EBV vaccine. As I've said before, when I was diagnosed in 1999 i was asked whether I had had glandular fever (yes aged 11). 25 years later and we're still talking about EBV!!! Why no urgency? Because it affects women more than men? Because it is stigmatised and hidden?
I most certainly won’t be part of the generation that failed my own! I was diagnosed in 2014 and within weeks of diagnosis I began campaigning for HSCT to be more widely available on the NHS; I could do nothing as an MSer to help prevent MS, but I could campaign on behalf of the most effective treatment. When I requested HSCT in the UK in 2014 that would have made me UK treated patient #10. Now 11 years later the UK have treated around 425 patients with HSCT and another 500 have gone overseas. Close to 1,000 UK MS patients are now stabilised or even improved because of the Forum that we patients set up ourselves In 2015. As patients we need to look to the medics and scientists to work out how to prevent MS, but we certainly haven’t let down those already diagnosed. 🙂
The objectives of the meeting are appropriate, but I hope to be able to disagree with your statement, “As time crawls by, I think we will be known as the generation that has let the current and next generation of people with MS (pwMS) down”. You’ve been citing EBV as the key aetiological factor for 2 decades, so it is to be hoped that, now the EBV factor is partially agreed, our generation won’t be as dim as our parents’ generation. Even if an EBV vaccine doesn’t prevent MS, our generation is at least not turning a blind eye to the (in my opinion) obvious - they asked for your ideas, rather than shunning the renegade (meant as a complement). Ultimately, EBV vaccination may not prevent MS (I think it will). Progress is not made by stagnation, but by activity. Just consider the Kurt Lewin’s effect. Even if it turns out to be a dead end, we won’t find out by ignorant inactivity and there are extremely likely to be unintended benefits to stamping out EBV. There may be some negative unintended consequences - eg. More promiscuity amongst teenagers, no longer impeded by worries about glandular fever, but I don’t imagine many hormonal teenagers worry about EBV carriage when they’re going for a first snog. If you target 13 year olds (the youngest teens), their seroconversion rate is about 60%, so earlier intervention is likely to produce a bigger effect size. I would add it to the primary imms course in babies. Maybe 8/52. Even the MMRV is too late to prevent the majority of Chicken Pox. The VZV component needs to be earlier. Lots of people will catch human herpes viruses before the age of 12 months.
I don’t mean to be flip, but I had it at age 12. And I wasn’t snogging anything or anyone… :)
Very interesting domino effect. Given the solvents and air pollution, I was expecting major stress and lack of sleep to be at a similar level. Would like to know your opinion on this :)
and anything else that causes/increases inflammation?
A thought occurred to me recently, given I have had a number if blood tests done over the last few years. MCV, MCH, MCHC stayed elevated when I was treated with B12 and methylfolate, but my elevated homocysteine came down. Lymphocytes have stayed elevated as well. My functional medicine doctor thinks I have a viral infection and has ebv as a possibility. My symptoms of neuropathy come and go for a few months at a time and I wonder if that's due to a reactivation of ebv.
I wish I had curious doctors…how many of us have severe neuropathies? I have given up feeling my feet. Numb and spastic, an awful combination. Perhaps EBV?
The best way to find a curious doctor is to find a functional medicine doctor. I'm very fortunate that my family MD shares a practice with a functional medicine doctor. I recently did a neuralzoomer test through him, it's designed to pinpoint specific viral infections. He wants to see if my recent return of neuropathy is due to a reawakening of something like ebv. His goal since I first started with him has been to remove all inflammation from my body. Given I only have occasional neuropathy and no disability I do think his approach is working. I currently do a bit monthly IV therapy of glutathione and selenium to deal with inflammation and oxidative stress. When that ends we're switching to helixor therapy to try and render my viral issue dormant. It's fascinating stuff, but I will admit there's a cost.
I want to be where you are! I’d love to feel my feet..
I'm quite fortunate, I get these bilateral vibrations in my jaw and hands 4 or 5 times a week for a few months, then they go away for a few months and then they come back, it's a cycle and I wonder if it's something viral that flares up. Otherwise is just have the odd cramp in my right calf first thing in the morning. But my L5/S1 vertebrae are also now self fusing as the disc is completely herniated so it's hard to say if the calf cramp is neurological or structural. I.also have a half dozen other discs that are bulging.
Sounds like you have a lot going on, and it doesn’t sound easy. My feet have been numb now for well over a year. I wonder how many of us have peripheral neuropathies? I wish there was something that would help. Balance is tough enough. Take care, Kevin.
I disagree with your opening statement that your generation will be remembered as one that let current and future generations down. Your generation will be remembered as one that persevered with MS and improved treatments and understandings over a lifetime of work.
The focus now on EBV is a good example on persevering and focus on the data. The massive cohort from the US DOD had enough in the numerator and denominator to prove causality. previous studies were small….but all the prior work has laid the foundation.!
Others like Dr Hauser persevered and focused on treatments that have been, literally, life changing for many - including me.
Your generation has embraced social media and sharing your knowledge. This is all a big deal and I give you my heart felt gratitude. I choose to think of your generation as the ones who chose to elevate MS and create change.
What daily vitamin cocktail do you recommend for someone with RRMS?
I only recommend vD3 4,000U per day for bone health. If you are vegan, there is a cocktail you need, but that is based on the fact that a vegan diet is deficient and many important micronutrients.
why is coffee a risk factor for MS? I saw this on your slides. Am I interpreting that correctly? If so is coffee not good for you once you have MS? I drink a lot of coffee due to fatigue
It is a negative risk factor; it reduces your risk of getting MS.
Have you considered MS could be caused by other viruses as well as EBV? Making one bet on EBV seems to be a massive gamble if other viruses are involved
Yes, the data for the other viruses doesn't stand up. Interestingly CMV is protective.
What do you think of Julian Gold not sharing your view on vaccines for MS based on EBV developing for evolutionary reasons and knocking EBV out of the equation could cause other unforeseen problems
That is science. Without data, we have opinions. The only way to test the theory is to vaccinate and observe the results. This same concern happened with VZV, and the hypothesised problems did not materialise after the vaccine was launched.