Preventing MS
We will be known as the generation that has let the current and next generation of people with MS down.
I am attending a closed ‘Global MS Prevention Workshop’ in Lisbon. It is being sponsored and run by MS Canada and MS Australia. I am grateful and privileged to have been invited to speak and participate in this meeting. I have attended many of these types of meetings before, and little has changed. I hope this one is different. You can download the programme and my presentation for more information.
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. They will be asking if you knew that MS is a preventable disease back in the early noughties, why are you still having meetings about MS prevention? Why didn’t you start MS prevention trials decades ago?
When it comes to vitamin D supplementation, I agree with this criticism. However, when it comes to EBV vaccination, vaccines were not available and are still being developed. Developing vaccines is high-risk and very expensive, and many stakeholders need to buy into the strategy of using a vaccine to prevent MS and other EBV-associated diseases. There are economic issues related to the cost-effectiveness of vaccines, as well as the question of whether to target high-risk groups or the general public more broadly. I have discussed these issues in some detail in a recent Editorial commentary we wrote (paper below). Thank you for completing the survey on whether you would consider vaccinating your relatives against EBV. It supports the strategy of initially targeting adolescents to prevent infectious mononucleosis (IM) and then using population registers to monitor the incidence of MS and other EBV-associated diseases as a result of the intervention.
EBV vaccine studies are going to happen and will be driven by Big Pharma. Many questions need to be answered regarding the vaccines themselves, for example, whether to use mRNA or traditional vaccine platforms, which antigens to target (lytic, latent, or both), which adjuvant to use, how many doses to administer, etc. Some individuals want to avoid using the EBNA-1 antigen in the vaccine in case immunity to the antigen triggers MS via molecular mimicry. Each of these issues warrants a newsletter. I have developed ideas and strong opinions on all of these issues from another successful vaccine programme to present diseases, in particular the HPV vaccine to prevent cervical and other epithelial cancers.
We are attempting to make the case for preventing IM by conducting health economic work to demonstrate that IM is a worthy prevention target at the population level, or the very least, in high-risk groups. We are also developing a strategy for creating a treatment for IM to hopefully prevent the immunological consequences of IM that lead to autoimmunity. Again, this is based on the success of antibiotic treatment of streptococcal infection in preventing rheumatic fever and other post-streptococcal autoimmune diseases.
I would be interested in hearing any comments you may have on this meeting and its aims.
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
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.
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.