I have been thinking about this for years. Since the US military study on EVB and MS, I have been looking for a trial. My 16 year old daughter actually is in one of the trials right now. She was negative in the screening so we thought it was worth a try to lower her MS risk.
The concept that big pharma might not necessarily want to find solutions to stop diseases from occurring in order to protect their income from treatment of those diseases is very troubling in deed.
I did a back of an envelope calculation and pharma stand to lose billions if all the potential EBV caused disease is stopped. Obviously, if there is a vaccine producer who doesn’t make any of the drugs, they’ll be quids in. One issue to be aware of is that many pension funds invest heavily in the oil and pharmaceutical companies, so there are perverse incentives to fail, particularly as we all move to EVs.
Of course I support vaccination to prevent EBV, MS, SLE and the host of other diseases and cancers in your basket.
“Immunisation makes adults” and anti-vaxers should take a walk round a graveyard and look at the causes and ages of death a few generations ago. If I could have reduced the future risk of MS for my 3 daughters when they were young, I would have. Now I should very much like to protect my 2 wee grand-daughters aged 3 years and 4 months. Tell me how I can help lobby governments or support the multinational public health study needed to provide the evidence.
I would like my children be vaccinated if I had children. But one of the big problems right now in the United States is that we have Donald Trump in power, and his cabinet is stacked with anti vaxxers and people agnostic and antagonistic towards science. Not to mention it's going to make this very difficult for the rest of the world for multiple reasons, not least of which we have been a leader in the world in promoting good health and preemptive measures to prevent disease.
Could this be flipped by studying people who for some reason have not contracted EBV as this is a much smaller cohort? Study their rates and types of inflammatory disease compared to the general population etc
Perhaps this could for instance uncover a gene therapy solution?
I know all the paediatric EBV-ve MS patients have turned out to have MOGAD disease. I am not aware of any data on the EBV-negative cohort. In our study only 1 of 1,047 patients (<0.01%) was truly EBV-negative.
I think you are such a healthy man that you could see MS cured/prevented from other directions (i.e. other than EBV), if EBV related research ended up being a dead-end :)
I had an invasive melanoma diagnosed and treated two years ago. There are no Mets, but who knows what is waiting around the corner? Similarly, four years ago, I had a significant accident with polytrauma, including a fractured C-spine. I am lucky not to be a paraplegic. So, I am taking nothing for granted.
Antiviral Trials for EBV in Multiple Sclerosis Starting in 2025
In 2023 a trial for treating EBV in MS with an [HIV retroviral Tenofovir Alafenamide](https://clinicaltrials.gov/study/NCT04880577) was denied funding. The Solving MS team contacted the researchers at Harvard (Prof. Levy and Dr. Drosu) The DOD MSRP said not enough human evidence to justify funding. The Harvard team had a pilot study ready to test another HIV antiretroviral drug (Truvada) to collect evidence on changes of EBV viral load in saliva and blood. We were able to fund this study, and we also hoped this would draw attention to #EBVcausesMS. Maybe it did, because the funding happened in 2024 for human trials, although not in the USA.
Three new antiviral treatment trials for EBV in MS are launching in 2025.
**◘MRFF** funded $10 million for Australian research on EBV in MS. **MS Australia** and **Griffith University** are launching two clinical trials of EBV antiviral medications to treat MS fatigue and progression.
\#1 Trial **FIRMS EBV - Spironolactone vs Tenofovir Alafenamide**
\#2 Trial **Spironolactone & Famciclovir for EBV STOP-MS Trial**
**◘**[**Repurposing Licensed Drugs with Activity Against Epstein-Barr Virus for Treatment of Multiple Sclerosis: A Systematic Approach**](https://pubmed.ncbi.nlm.nih.gov/39792343/) CNS Drugs, 2025 Jan 10.
This paper from the “Australian Anti-EBV Drugs for MS Working Group” provides the rationale for the drugs selected for the 3 trials above. This isn't a free paper but it is an overview, and you can see the 112 reference papers. The 18 authors from around the world have written hundreds of papers over the years on EBV and MS. They have worked to advance the research, despite stiff resistance from entrenched interests. Prof Gavin Giovannoni you may know as a great patient advocate from his [**MS-Selfie**](https://substack.com/@gavingiovannoni) substack. He was the first to campaign for this research over 10 years ago and coined #EBVcausesMS. He has written 42 papers on the topic.
**These 3 trials are not going to take 10 years!** They all started as phase 3 because they are repurposed licensed drugs and safety is already known. Phase 3 takes three years but If a drug shows significant benefit in early analysis, it may be eligible for accelerated approval. Research suggests this happens for around 30% of repurposed drug trials. PwMS can also show these trials and link to the Repurposing paper (above) to their doctor if they're seeking an off-label prescription before approval.
**◘The National MS Society NMSS** USA, $1 million in grants for 3 EBV studies in 2024
The BEHIND-MS project introduces the project’s objectives and groundbreaking research efforts. This five-year European research initiative, with EUR 7.1 million funded by EU Horizon and SERI, is focused on understanding the role of the Epstein-Barr Virus (EBV) in the onset and progression of Multiple Sclerosis (MS).
As usual this is fascinating and thank you. I am sure vac for EBV would have major results.
I had IM at 17, brucellosis at 21. Melanoma at 34, MS longstanding RR no DMD treatment. Mets from Melanoma at 69, 72. Immunotherapy with Keytruda which shook MS a bit but resolved and currently in remission from cancer.
At the base of this I am sure the initial EBV was the gateway, and also led to viral polyarthritis which has left its mark.
Your interrogation of MS and its causes is such important work. Thank you!
I read a recent article about how pwms have a lower risk of Alzheimer’s. And then I read your point about the Shingles vaccine. And it made me wonder: a lot of pwms receive the shingles vaccine early before getting started on anti-cd20s.
I'm a great supporter of vaccines and EBV is clearly an essential risk factor in MS and other auto-immune disorders as well as cancers. But most people live long lives without getting these illnesses. Shouldn't there be a focus on these people? How are their lives different to those who become ill? I have been reading Gabor Mate recently, who believes that trauma plays a major part in these illnesses.
Not sure what you mean. Yes, many people live long lives without getting these illnesses, but this is how we determine risk factors for getting diseases by using these people as controls. The good news is the majority of people with a poor risk profile don't get MS. I suspect lousy luck plays a role in people who get these diseases. Trying to prevent bad luck from playing a role is to avoid them from getting infected with EBV and/or developing IM.
Victoria - Trauma has multiple meanings depending on context. There is some proof that stress causes physical illnesses, but it's only part of the story.
My Neurologist thinks putting all your eggs in the EBV basket is a big gamble because there are potentially a lot of other viruses at play or a combination of viruses that contribute to MS. Julian Gold who is an expert on HIV and viruses approves of targeting MS (EBV) with antivirals but his opinion is from an evolutionary perspective there are reasons we have EBV and taking out EBV completely via a vaccine is not a wise option as this could cause other problems.
I have the privilege and challenge of spending time examining tissues from pwMS who have donated in the hope of discovering the mechanisms in the CNS that explain MS. This is not an 'academic' exercise to keep me and others occupied in a fascinating conundrum. When the processes in the MS lesions are revealed (they are still a considerable mystery, despite the 180 years of research) it will be feasible to block the key events in the chain of 'causation' and stop the disease processes. Even If you are a serious EBV 'believer' that some anti-EBV strategy is feasible, it is currently clear that "EBV cannot be enough'...there is more to be discovered that can be stopped. If EBV is simply being caught up in the early primary events, as are other viruses, then we need to know the mechanism that causes this. I live in hope, not a feeling, but a path to follow. 'If hopes were dupes, fears may be liars' I quoted in my Lab notes this am.
Interesting listen. I guess we will all have to 'Watch and Wait' as I have heard many times from Neurologists. Big Parma will be keen to crack on with it if it is lucrative. I would prefer not to take a vaccine until I feel comfortable to do so. Xx
I have been thinking about this for years. Since the US military study on EVB and MS, I have been looking for a trial. My 16 year old daughter actually is in one of the trials right now. She was negative in the screening so we thought it was worth a try to lower her MS risk.
The concept that big pharma might not necessarily want to find solutions to stop diseases from occurring in order to protect their income from treatment of those diseases is very troubling in deed.
I did a back of an envelope calculation and pharma stand to lose billions if all the potential EBV caused disease is stopped. Obviously, if there is a vaccine producer who doesn’t make any of the drugs, they’ll be quids in. One issue to be aware of is that many pension funds invest heavily in the oil and pharmaceutical companies, so there are perverse incentives to fail, particularly as we all move to EVs.
Of course I support vaccination to prevent EBV, MS, SLE and the host of other diseases and cancers in your basket.
“Immunisation makes adults” and anti-vaxers should take a walk round a graveyard and look at the causes and ages of death a few generations ago. If I could have reduced the future risk of MS for my 3 daughters when they were young, I would have. Now I should very much like to protect my 2 wee grand-daughters aged 3 years and 4 months. Tell me how I can help lobby governments or support the multinational public health study needed to provide the evidence.
I would like my children be vaccinated if I had children. But one of the big problems right now in the United States is that we have Donald Trump in power, and his cabinet is stacked with anti vaxxers and people agnostic and antagonistic towards science. Not to mention it's going to make this very difficult for the rest of the world for multiple reasons, not least of which we have been a leader in the world in promoting good health and preemptive measures to prevent disease.
Could this be flipped by studying people who for some reason have not contracted EBV as this is a much smaller cohort? Study their rates and types of inflammatory disease compared to the general population etc
Perhaps this could for instance uncover a gene therapy solution?
That is what we want to do, but finding them is difficult.
Have you found pwMS who haven’t had EBV infection?
Less than 1%, but then the MS diagnostic criteria are leaky (5% of pwMS diagnosed in life don't have MS at post-mortem). So EBV-ve MS may not be MS.
Are there figures for the percentage of that 5% who wre EPV -ve and +ve?
I know all the paediatric EBV-ve MS patients have turned out to have MOGAD disease. I am not aware of any data on the EBV-negative cohort. In our study only 1 of 1,047 patients (<0.01%) was truly EBV-negative.
Please see: https://pmc.ncbi.nlm.nih.gov/articles/PMC5292929/
Thanks Prof G
I think you are such a healthy man that you could see MS cured/prevented from other directions (i.e. other than EBV), if EBV related research ended up being a dead-end :)
I had an invasive melanoma diagnosed and treated two years ago. There are no Mets, but who knows what is waiting around the corner? Similarly, four years ago, I had a significant accident with polytrauma, including a fractured C-spine. I am lucky not to be a paraplegic. So, I am taking nothing for granted.
Hear, hear!
Was just reading this in reddit
Antiviral Trials for EBV in Multiple Sclerosis Starting in 2025
In 2023 a trial for treating EBV in MS with an [HIV retroviral Tenofovir Alafenamide](https://clinicaltrials.gov/study/NCT04880577) was denied funding. The Solving MS team contacted the researchers at Harvard (Prof. Levy and Dr. Drosu) The DOD MSRP said not enough human evidence to justify funding. The Harvard team had a pilot study ready to test another HIV antiretroviral drug (Truvada) to collect evidence on changes of EBV viral load in saliva and blood. We were able to fund this study, and we also hoped this would draw attention to #EBVcausesMS. Maybe it did, because the funding happened in 2024 for human trials, although not in the USA.
Three new antiviral treatment trials for EBV in MS are launching in 2025.
**◘MRFF** funded $10 million for Australian research on EBV in MS. **MS Australia** and **Griffith University** are launching two clinical trials of EBV antiviral medications to treat MS fatigue and progression.
\#1 Trial **FIRMS EBV - Spironolactone vs Tenofovir Alafenamide**
\#2 Trial **Spironolactone & Famciclovir for EBV STOP-MS Trial**
**◘EU's HORIZON Europe** 7.1 million EUR funded **European Multiple Sclerosis Platform EMSP**
\#3 Trial **Tenofovir alafenamide fumarate (TAF) for EBV in MS** University of Bergen, Norway
For the links to each trial and background info see:
[**Clinical Trials of Antiviral Therapies for Epstein-Barr Virus**](https://docs.google.com/document/d/1Z7BWgRU7Q8ByXwBXGzW737d-lUXX9styH5HphENon3w/edit?tab=t.0#heading=h.un5axifw44wr)
**◘**[**Repurposing Licensed Drugs with Activity Against Epstein-Barr Virus for Treatment of Multiple Sclerosis: A Systematic Approach**](https://pubmed.ncbi.nlm.nih.gov/39792343/) CNS Drugs, 2025 Jan 10.
This paper from the “Australian Anti-EBV Drugs for MS Working Group” provides the rationale for the drugs selected for the 3 trials above. This isn't a free paper but it is an overview, and you can see the 112 reference papers. The 18 authors from around the world have written hundreds of papers over the years on EBV and MS. They have worked to advance the research, despite stiff resistance from entrenched interests. Prof Gavin Giovannoni you may know as a great patient advocate from his [**MS-Selfie**](https://substack.com/@gavingiovannoni) substack. He was the first to campaign for this research over 10 years ago and coined #EBVcausesMS. He has written 42 papers on the topic.
**These 3 trials are not going to take 10 years!** They all started as phase 3 because they are repurposed licensed drugs and safety is already known. Phase 3 takes three years but If a drug shows significant benefit in early analysis, it may be eligible for accelerated approval. Research suggests this happens for around 30% of repurposed drug trials. PwMS can also show these trials and link to the Repurposing paper (above) to their doctor if they're seeking an off-label prescription before approval.
**◘The National MS Society NMSS** USA, $1 million in grants for 3 EBV studies in 2024
• Grant title: [**CD4 T cells restricted to DRB1\*15:01 recognize two Epstein-Barr virus glycoproteins capable of intracellular antigen presentation**](http://multiple-sclerosis-research.org/?action=user_content_redirect&uuid=f0fe3a1b28cccf9fd495196b4a75c15715d2b01c0878159fd0523e3255459f44&blog_id=146285895&post_id=48790&user_id=0&subs_id=558522416&signature=51dcdb4328bb5791b64c27cb59807608&email_name=new-post&user_email=swilkinson@solvingms.org&encoded_url=aHR0cHM6Ly9wdWJtZWQubmNiaS5ubG0ubmloLmdvdi8zOTQzMjc5NS8). Drosu et al., 2024 Oct
A complex paper from the Harvard team which is working with the EBV trial sponsors, but MS Australia wrote a great plain language explanation:
[**How the strongest MS risk gene alters the immune response to Epstein-Barr virus**](https://www.msaustralia.org.au/news/ms-risk-gene-alters-immune-response-to-ebv)
• Grant title: When does MS begin after infectious mononucleosis?
• Grant title: Targeting EBV entry glycoproteins for Vaccine and therapeutic development.
**◘Easy to understand EBV information**
**•** [**MS Australia Launches Major EBV Research Platform to Combat MS**](https://www.msaustralia.org.au/news/ms-australia-launches-major-ebv-research-platform-to-combat-ms)
[**EBV in MS Platform**](https://www.msaustralia.org.au/ebv/)
**• European Multiple Sclerosis Platform EMSP** [ ](https://emsp.org/projects/behind-ms/)
The BEHIND-MS project introduces the project’s objectives and groundbreaking research efforts. This five-year European research initiative, with EUR 7.1 million funded by EU Horizon and SERI, is focused on understanding the role of the Epstein-Barr Virus (EBV) in the onset and progression of Multiple Sclerosis (MS).
Video [**BEHIND-MS: Exploring the Link Between Epstein-Barr Virus and Multiple Sclerosis**](https://www.youtube.com/watch?v=LvbXvLLsVLw)
EMSP has two information platforms [**BEHIND-MS**](https://emsp.org/projects/behind-ms/) and [**EBV-MS**](https://emsp.org/projects/ebv-ms/)
**◘Let them know you appreciate these trials and research!**
Tell researchers how you feel about having this huge unanswered question finally addressed.
If these trials prove antivirals work on EBV, that could mean an MS cure. Let's encourage them!
**• Comment on EMSP posts:** [**Linked In**](https://www.linkedin.com/posts/eumsplatform_behind-ms-exploring-the-link-between-epstein-barr-activity-7246796241630576640-uXKL?utm_source=share&utm_medium=member_desktop) [**Facebook**](https://www.facebook.com/eumsplatform/posts/pfbid0VpxaiXWrSppQUHj3DYHmkJqEmBRsFWWvSP2UxXeawvZ7MJgJcw8jJcuD2ybjeyF5l)
**• Comment on MS Australia posts:** [**Linked In**](https://www.linkedin.com/posts/ms-australia_ms-multiplesclerosis-ebv-activity-7284808559689658368-7ogh?utm_source=share&utm_medium=member_desktop) [**Facebook**](https://www.facebook.com/MSAustralia/posts/pfbid0SJJKLj9CgTMVjBKKVPYp7YEFFy4XPTi71xZouhMc5uvqHcaTpMNMxiiLpGtYdjcel?__cft__%5b0%5d=AZUsO-wGmlvgHCDxdedJ4FVgmuV7oCKEdgLJ3K5Miexj_aAv-3vxq9isQRrpX6Y9LPBjB6BERSCLQK0XcQtAX9HRViGKzoUac73q-EQlmF38d934KbOD9oPiRUKi0_su5l)
**• Comment on NMSS post** [**Linked In**](https://www.linkedin.com/posts/timcoetzee_a-happy-new-year-to-everyone-in-my-linkedin-activity-7280281028856872961-Wnb6?utm_source=share&utm_medium=member_desktop) [**YouTube Video on EBV**](https://www.youtube.com/watch?v=8zcF6tdalsc)
**◘**[**MS Research Database**](https://solvingms.org/research-database): Here are some tips to learn about all the curative/regenerative MS trials.
There are 3 tables, accessed by clicking tabs at the bottom of the screen.
**MS Trials tab** \- over 70 clinical trials with estimated FDA approval dates.
**All MS Therapies tab** \- over 170 therapies at all phases of research with more details like MOA.
**Long Covid ME/CFS tab** \- clinical trials for these conditions.
Anything with a blue link clicks to detailed info.
Use the browser Find command to search for keywords.
PC Ctrl+F, Mac Command+F, Mobile Find in page.
Does not fit well on a mobile phone, use a larger screen.
[**Gregory-MS**](https://gregory-ms.com/) AI Search Engine for all MS papers and clinical trials - a great resource!
Look forward to your input on MS research or any questions you have!
As usual this is fascinating and thank you. I am sure vac for EBV would have major results.
I had IM at 17, brucellosis at 21. Melanoma at 34, MS longstanding RR no DMD treatment. Mets from Melanoma at 69, 72. Immunotherapy with Keytruda which shook MS a bit but resolved and currently in remission from cancer.
At the base of this I am sure the initial EBV was the gateway, and also led to viral polyarthritis which has left its mark.
Your interrogation of MS and its causes is such important work. Thank you!
I completed your survey!
Now I have got to ask:
I read a recent article about how pwms have a lower risk of Alzheimer’s. And then I read your point about the Shingles vaccine. And it made me wonder: a lot of pwms receive the shingles vaccine early before getting started on anti-cd20s.
Certainly not causation, but intriguing?
I'm a great supporter of vaccines and EBV is clearly an essential risk factor in MS and other auto-immune disorders as well as cancers. But most people live long lives without getting these illnesses. Shouldn't there be a focus on these people? How are their lives different to those who become ill? I have been reading Gabor Mate recently, who believes that trauma plays a major part in these illnesses.
Not sure what you mean. Yes, many people live long lives without getting these illnesses, but this is how we determine risk factors for getting diseases by using these people as controls. The good news is the majority of people with a poor risk profile don't get MS. I suspect lousy luck plays a role in people who get these diseases. Trying to prevent bad luck from playing a role is to avoid them from getting infected with EBV and/or developing IM.
Re: "Gabor Mate recently, who believes that trauma plays a major part in these illnesses"
Yes and no. Trauma only explains a tiny proportion of MS risk.
Victoria - Trauma has multiple meanings depending on context. There is some proof that stress causes physical illnesses, but it's only part of the story.
My Neurologist thinks putting all your eggs in the EBV basket is a big gamble because there are potentially a lot of other viruses at play or a combination of viruses that contribute to MS. Julian Gold who is an expert on HIV and viruses approves of targeting MS (EBV) with antivirals but his opinion is from an evolutionary perspective there are reasons we have EBV and taking out EBV completely via a vaccine is not a wise option as this could cause other problems.
I have the privilege and challenge of spending time examining tissues from pwMS who have donated in the hope of discovering the mechanisms in the CNS that explain MS. This is not an 'academic' exercise to keep me and others occupied in a fascinating conundrum. When the processes in the MS lesions are revealed (they are still a considerable mystery, despite the 180 years of research) it will be feasible to block the key events in the chain of 'causation' and stop the disease processes. Even If you are a serious EBV 'believer' that some anti-EBV strategy is feasible, it is currently clear that "EBV cannot be enough'...there is more to be discovered that can be stopped. If EBV is simply being caught up in the early primary events, as are other viruses, then we need to know the mechanism that causes this. I live in hope, not a feeling, but a path to follow. 'If hopes were dupes, fears may be liars' I quoted in my Lab notes this am.
Interesting listen. I guess we will all have to 'Watch and Wait' as I have heard many times from Neurologists. Big Parma will be keen to crack on with it if it is lucrative. I would prefer not to take a vaccine until I feel comfortable to do so. Xx