I'm a person with MS (28 years) and I definitely feel like a sibling to y'all, that's why I've been lurking here for years, Y'all are very proactive and great at research! Some MS friends and I formed the nonprofit Solving MS to focus on the cure for MS. I put together a database to track all the trials, and it has a column for EBV Rx; currently 5 trials and 5 vaccines focused at EBV.
https://solvingms.org/research-database
The profile on
Antivirals/Antiretrovirals for EBV in MS is 10 pages. Much of it you are already familiar with, but the intro includes a grouping of the 3 different approaches to treating EBV.
I would love any feedback, especially if anything looks wonky! Collaboration across EBV diseases from autoimmune, CFS to cancer will get us there faster!
Thanks so much for commenting here! I've read your description and have bookmarked the database to track any progress. Nothing looks wonky to me. Well done on setting up a NPO for this cause! I've long since believed that something similar would be a good idea for ME/CFS and especially for Long-Covid, since patients and doctors aren't aware of many of the trials happening and on the other hand many trials are struggling with decent patient recruitment.
What's the general medical and what's the patient consensus on the EBV and MS connection? ME/CFS and Long-Covid researchers are always very keen to mention the EBV and MS connection, but what do those MS researchers or patients say that believe in a different mechanism? Do they try to explain Ascherio's research or just nod it of by saying it hasn't been reproduced? Or do they argue that it's just some sort of downstream effect? Is someone currently trying to reproduce a study akin to the big Ascherio study (this seems like a comparably simple and inexpensive thing to do)?
Personally, I've been following the MS trials closely, especially the ATA188 trial. I've been lurking around some MS subreddits for anectdotal information of patients currently in participating trials. Are there better sources to do that? How are patient self experiments with things like generic versions of TAF or Lamivudine going?
Given the lack of research funds for ME/CFS research, it's currently more likely that ME/CFS solutions will come as a bioproduct when trying to solve other diseases that receive more funding. If it were proven and accepted that EBV causes MS, we might some day not be perceived as looney's anymore (or perhaps we'd then just be considered to have "psychosomatic EBV reactivations"). The EBV research is pretty dead when it comes to ME/CFS and even Long-Covid. Realistically this would probably only change if mAB's for EBV became available. I suppose that's something MS patients are waiting for very desperately as well.
From what I've read it's quite likely that there will be an MS treatment in 3-5 years (which doesn't have to mean remylination), do you think this is realistic? What are your thoughts about Temelimab? I'm aware that their trials didn't achieve what they wanted to achieve, but do you still have hope in their unique approach or is it currently more believed that HERV's are a negligible downstream effect?
I believe almost all MS trials, at least those not directly targeting remylination, and especially studies should always try to include a well constructed ME/CFS control group and the same holds true to an even large degree for ME/CFS research. I'd love to see far more collaboration and especially open source work across the different research fields, but unfortunately I don't think it's very realistic. On the one hand ME/CFS researchers probably lack the funding for collaborative work. On the other hand ME/CFS research is still widely regarded as nonsense in the medical field, which probably also means that MS researchers trying to collaborate might damage their reputation or at least reduce their chances of receiving grants. Especially when these grants involve ME/CFS collaborations. Personally, I've always thought that if I was healthy enough I'd become a ME/CFS researcher that would get his research funding by holding a university position in MS research and then do ME/CFS research as a "side business", sort of similar to Maria Ariza's research. Studying both diseases would be extremely beneficial as more mechanisms can be revealed when trying to understand the differences and similarities in the diseases and one would probably have more funding opportunities for ME/CFS research this way then when one tries to focus on it alone. Finally this could also give credibility to the ME/CFS field by being a MS researcher.
I've already gone a bit overboard with my questions, so I'll leave it at this for now
