Excellent explanation to start more experiments to zero in on EBV in MS.
ACTRIMS2023 Just concluded and had a strong focus on EBV and MS. Steven Jacobson @NIH presented a slide with Rx contenders for EBV. Don't yet know what he said but in the Antiviral category he listed: Brincidofovir, Raltegravir, Tenofovir, Valacyclovir, Interferons.
Antiretrovirals (TAF, TDF) have published case studies showing multi-year MS NEDA. Followed by cell-assay studies showing TAF most effective (Druso 2020)
But Brincidofovir was the one he put a circle around.
Brincidofovir is a broad antiviral against several DNA viruses, including HHV-6 and EBV for which it has a high EC50 of 10. But would it have any effect on latent EBV or only reactivated?
The antivirals are attractive b/c they are already FDA approved and if effective could help mitigate MS damage, while the vaccines and other therapies go through the long process to approval.
Which antivirals do you think should go into human biomarker trials like you did for Famvir?
Would concurrent animal model testing be helpful? Studies of EBV in a humanized mouse model and rabbit have been published.
Are there not enough of us from a significant number of countries that we translate this letter and attach it in an open letter to our national ms societies asking them to please print it on their website?
Sure to create some publicity to raise money to do haart?
Feb 26, 2023·edited Feb 27, 2023Liked by Gavin Giovannoni
Where can my wife get the tests such as those you mention that can indicate active (and smouldering?) MS please? Should the NHS be doing these as a matter of course if the patient reports worsening symptoms?
In the paper: “Roadmap for understanding mechanisms on how Epstein–Barr virus triggers multiple sclerosis and for translating these discoveries in clinical trials.” Steinman et al. The authors say:
“Tenofovir, an antiviral medication used to treat HIV‐1 and chronic hepatitis B, was recently shown to be a potent inhibitor of EBV lytic DNA replication. Tenofovir was listed on clinicaltrials.gov as an add‐on to anti‐CD20 therapies. That trial was withdrawn, but trials are being proposed with Tenofovir and other antivirals in various locations on our planet. It will be important to see whether antiviral activity against both lytic and latent phases of EBV infection will be relevant.”
NB PreP contains tenofovir. Shouldn’t MS patients (like me) just buy PreP online or get it from their GPs as a way of getting an anti-viral quickly while the research (which could take years) takes place?
This kind of research could really lead to some actual breakthroughs. Thank you for continuing to advocate for it.
As for existing treatments, reading your post, would you agree that teriflunomide is not a bad choiced choice for someone who has recurrent EBV-reactivations, and has been shown to respond to other DMTs (like DMF) with a sharp reduced CD8+ T cell number?
Prof G - I like your post on Linked.in about CD-19 targeted CART-cell therapy. You wrote that there is a chance it can work in MS. At least it works in lupus (it works via anti-EVB mechanism). Do you think such therapy could work in PP MS (or both RR MS and PP MS)? And the beginning of your letter seems like not every pharmaceutical and funding agency would like to focus on anti-EVB drugs in MS... do I understand it correctly? Should we convenience them more ?
I've read about Dr. Michael Levin and his research team from the University of Saskatchewan (USask) College of Medicine - they are looking into the connection between EBV and mutltiple sclerosis (MS) - do you know of any open clinical trials in this in Canada / USA ?
Hello I was taking Tysabri but after contracting meningitis in January I have stopped. I am willing to be a guinea pig for any trials you feel that I would be suitable for. It has been 8 weeks since my last infusion.
One question. Why ECF Mystery Solved Project has only 127 followers on youtube? It is a great explanation how EBV is connected with MS. Prof G, pls share it in your next post if possible.
Excellent explanation to start more experiments to zero in on EBV in MS.
ACTRIMS2023 Just concluded and had a strong focus on EBV and MS. Steven Jacobson @NIH presented a slide with Rx contenders for EBV. Don't yet know what he said but in the Antiviral category he listed: Brincidofovir, Raltegravir, Tenofovir, Valacyclovir, Interferons.
Antiretrovirals (TAF, TDF) have published case studies showing multi-year MS NEDA. Followed by cell-assay studies showing TAF most effective (Druso 2020)
But Brincidofovir was the one he put a circle around.
Slide snapshot: https://twitter.com/drbarrysinger/status/1629178462945820673
Brincidofovir is a broad antiviral against several DNA viruses, including HHV-6 and EBV for which it has a high EC50 of 10. But would it have any effect on latent EBV or only reactivated?
The antivirals are attractive b/c they are already FDA approved and if effective could help mitigate MS damage, while the vaccines and other therapies go through the long process to approval.
Which antivirals do you think should go into human biomarker trials like you did for Famvir?
Would concurrent animal model testing be helpful? Studies of EBV in a humanized mouse model and rabbit have been published.
Are there not enough of us from a significant number of countries that we translate this letter and attach it in an open letter to our national ms societies asking them to please print it on their website?
Sure to create some publicity to raise money to do haart?
Or am i way off with fhis..
Where can my wife get the tests such as those you mention that can indicate active (and smouldering?) MS please? Should the NHS be doing these as a matter of course if the patient reports worsening symptoms?
In the paper: “Roadmap for understanding mechanisms on how Epstein–Barr virus triggers multiple sclerosis and for translating these discoveries in clinical trials.” Steinman et al. The authors say:
“Tenofovir, an antiviral medication used to treat HIV‐1 and chronic hepatitis B, was recently shown to be a potent inhibitor of EBV lytic DNA replication. Tenofovir was listed on clinicaltrials.gov as an add‐on to anti‐CD20 therapies. That trial was withdrawn, but trials are being proposed with Tenofovir and other antivirals in various locations on our planet. It will be important to see whether antiviral activity against both lytic and latent phases of EBV infection will be relevant.”
NB PreP contains tenofovir. Shouldn’t MS patients (like me) just buy PreP online or get it from their GPs as a way of getting an anti-viral quickly while the research (which could take years) takes place?
This kind of research could really lead to some actual breakthroughs. Thank you for continuing to advocate for it.
As for existing treatments, reading your post, would you agree that teriflunomide is not a bad choiced choice for someone who has recurrent EBV-reactivations, and has been shown to respond to other DMTs (like DMF) with a sharp reduced CD8+ T cell number?
Question:
I forgot the name of it (might be octapus trial) - the trial where they throw drugs at ppms and see what sticks.
In essence - why cant we have a study like that for rrms so we can try antivirals?
Or am i losing the plot here?
Prof G - I like your post on Linked.in about CD-19 targeted CART-cell therapy. You wrote that there is a chance it can work in MS. At least it works in lupus (it works via anti-EVB mechanism). Do you think such therapy could work in PP MS (or both RR MS and PP MS)? And the beginning of your letter seems like not every pharmaceutical and funding agency would like to focus on anti-EVB drugs in MS... do I understand it correctly? Should we convenience them more ?
In this context, does EBV PCR test done at time of relapse has any significance? It's negative in many cases.
In my opinion, If there are self antigens outside CNS and there is no autoimmunity, we should investigate why it hapens first. Any thoughts?
I've read about Dr. Michael Levin and his research team from the University of Saskatchewan (USask) College of Medicine - they are looking into the connection between EBV and mutltiple sclerosis (MS) - do you know of any open clinical trials in this in Canada / USA ?
Trifling concern, but for those of us whose phones are too old to support the Substack app, is there another way to listen to the audio versions?
Hello I was taking Tysabri but after contracting meningitis in January I have stopped. I am willing to be a guinea pig for any trials you feel that I would be suitable for. It has been 8 weeks since my last infusion.
How much do you think these trials would cost? Is it worth looking for some philanthropists rather than pharmaceutical companies or funding agencies?
https://www.clinicaltrials.gov/study/NCT05957913 is the link to the US PrEP trial, The patient led US group behind this trial is called Solving MS Their website is https://solvingms.org/
One question. Why ECF Mystery Solved Project has only 127 followers on youtube? It is a great explanation how EBV is connected with MS. Prof G, pls share it in your next post if possible.