You're right - I don't understand it. However, it's really important for me to read this level of information because it gives me an appreciation of how complex it all is and a general picture of what the known unknowns are. This in turn helps me ask more informed questions about my own treatment and to understand that my neurologist doesn't have all the answers yet.
I would really like it if there was a basic guide/text book aimed at patients to teach us the biology needed to understand more. I find it all fascinating and am one of those people for whom the more information I have, the less scary it all is because it is just so interesting
I'd even pay for access to a short online video course to accompany it - a sort of first year undergrad level introduction to MS immunology and pathology
How is it possible to write a simple ABC of the immunology and pathogenesis of MS when there is no consensus on these issues in MS academia? We still seem to be in the dark ages regarding the role of T v B cells, the possible role of a virus, the relationship between relapses and smouldering MS (which comes first), whether the target of attacks is actually myelin, the gender difference….
I need to put my phone down and get off the internet. At 57, I just don’t give a crap anymore. Just decades and decades of running on the spot and being no closer to any answers that actually matter. For me, any meaningful or purposeful life is over. I need to hang in there until my son finishes Uni and is out on his own, and then I can MAiD myself outta here. Peace.
Can I urge you to please not give up. I have many patients who despite having MS and being disabled find purpose in doing other things; learning new things and engaging with people. Not sure how I can help you, but there are a large number of community activities that you could try. Please give it a go?
For me, the science and detail you add is the best part. It is much simpler to read these posts than try to interpret detailed studies, which I attempt to do anyway. It’s the perfect level.
Correct. I do find the studies confusing however, I appreciate and will continue to advocate for research highlights. They are a helpful tool for future treatment decisions and conversations with my Neurologist.
Yes, please continue writing about new MS research! Although I don't understand all, it is very interesting and gives me hope that research is progressing. Reading about MS and trying to understand what is currently known to research is the only thing that helps me cope with my anxiety regarding this disease
i appreciate seeing the research findings, though I admit I'm a bit confused. I have become a convert to the smoldering MS perspective, and I had thought that involved the microglia more than either the T or B cells? I may have missed something - I'm no scientist, after all.
Smouldering MS has many components. Only one is the microglia. Another is CNS resident B and T-cells, which is why we need drugs to get into the CNS to target these cells.
MS selfie is not a bad place to post research findings, but https://multiple-sclerosis-research.org/ would be an even better place... (Maybe because it was the original purpose of a ms - research - blog...)
Sorry this is a bit off-topic but it's about HERVs and MS. Do you think it’s worth re-visiting the HERV/MS idea you explored with Prof Julian Gold, back in 2019. Prof Gold is currently organising a Phase III trial using a more potent HIV drug (Triumeq) in MND following a successful Phase II trial using the drug in MND. Results of the Phase II trial are at https://pubmed.ncbi.nlm.nih.gov/31284774/
Results of the Phase III trial are expected in 2026 and there are interim analyses in 2025. Isn’t this a trial the MS community should be watching closely with a view to trialling Triumeq in MS? Finally, given the fact you have worked with Prof. Gold before, isn’t this something you could do?
Finally, a report in Brain, Behaviour and Immunity (Jan 2025) based on research carried out by researchers from King’s College, London looks at HERVs in MS (HERV W) and MND (HERV K)
I’m with everyone else- I don’t understand all the science and deeper implications but I always come up with a nugget or two that is another piece of the puzzle to my overall understanding of. MS. I particularly like when you summarize in “patient” language at the end so I can double check if I’m on the right track as I read. Have learned so much from you in the year and a half that I’ve subscribed. Thank you! Keep the new research and news from ECTRIMS coming!
You're right - I don't understand it. However, it's really important for me to read this level of information because it gives me an appreciation of how complex it all is and a general picture of what the known unknowns are. This in turn helps me ask more informed questions about my own treatment and to understand that my neurologist doesn't have all the answers yet.
I would really like it if there was a basic guide/text book aimed at patients to teach us the biology needed to understand more. I find it all fascinating and am one of those people for whom the more information I have, the less scary it all is because it is just so interesting
Good idea. I could write a simple ABC of the the immunology and pathogenesis of MS.
I'd even pay for access to a short online video course to accompany it - a sort of first year undergrad level introduction to MS immunology and pathology
How is it possible to write a simple ABC of the immunology and pathogenesis of MS when there is no consensus on these issues in MS academia? We still seem to be in the dark ages regarding the role of T v B cells, the possible role of a virus, the relationship between relapses and smouldering MS (which comes first), whether the target of attacks is actually myelin, the gender difference….
Please do! What a help that would be!
Please do, it would really help. My neurologist wouldn't have to dumb down so much when explaining things either
Excellent comment
As a starting point for general understanding of the immune system, I strongly recommend the book Immune by Philipp Dettmer.
I think its good for pwms and their loved ones to be able to access this information and research so thankyou
I need to put my phone down and get off the internet. At 57, I just don’t give a crap anymore. Just decades and decades of running on the spot and being no closer to any answers that actually matter. For me, any meaningful or purposeful life is over. I need to hang in there until my son finishes Uni and is out on his own, and then I can MAiD myself outta here. Peace.
Re: "I just don’t give a crap anymore."
Can I urge you to please not give up. I have many patients who despite having MS and being disabled find purpose in doing other things; learning new things and engaging with people. Not sure how I can help you, but there are a large number of community activities that you could try. Please give it a go?
For me, the science and detail you add is the best part. It is much simpler to read these posts than try to interpret detailed studies, which I attempt to do anyway. It’s the perfect level.
Please do continue discussing the latest scientific developments.
Yes, please continue to provide this level of information on MS-Selfie
Correct. I do find the studies confusing however, I appreciate and will continue to advocate for research highlights. They are a helpful tool for future treatment decisions and conversations with my Neurologist.
Yes, please continue writing about new MS research! Although I don't understand all, it is very interesting and gives me hope that research is progressing. Reading about MS and trying to understand what is currently known to research is the only thing that helps me cope with my anxiety regarding this disease
I was diagnosed with m. 19 years ago and in my brief summary of Ms learning I believed it was down to T cells being the culpit.
I'm excited to learn how the disease learning will progress from now on.
Keep the science coming.
i appreciate seeing the research findings, though I admit I'm a bit confused. I have become a convert to the smoldering MS perspective, and I had thought that involved the microglia more than either the T or B cells? I may have missed something - I'm no scientist, after all.
Smouldering MS has many components. Only one is the microglia. Another is CNS resident B and T-cells, which is why we need drugs to get into the CNS to target these cells.
MS selfie is not a bad place to post research findings, but https://multiple-sclerosis-research.org/ would be an even better place... (Maybe because it was the original purpose of a ms - research - blog...)
Thank you very much.🙃🙃🙃🤗🤗🤗😘😘😘😍😍😍🥰🥰🥰
Yes. This is the right place for scientific breakthroughs.
Sorry this is a bit off-topic but it's about HERVs and MS. Do you think it’s worth re-visiting the HERV/MS idea you explored with Prof Julian Gold, back in 2019. Prof Gold is currently organising a Phase III trial using a more potent HIV drug (Triumeq) in MND following a successful Phase II trial using the drug in MND. Results of the Phase II trial are at https://pubmed.ncbi.nlm.nih.gov/31284774/
with a more detailed account at
https://www.tandfonline.com/doi/pdf/10.1080/21678421.2019.1632899?needAccess=true
Details of the phase III trial are on the MNDA website at
https://www.mndassociation.org/research/clinical-trials/treatment-trials/triumeq
Results of the Phase III trial are expected in 2026 and there are interim analyses in 2025. Isn’t this a trial the MS community should be watching closely with a view to trialling Triumeq in MS? Finally, given the fact you have worked with Prof. Gold before, isn’t this something you could do?
Finally, a report in Brain, Behaviour and Immunity (Jan 2025) based on research carried out by researchers from King’s College, London looks at HERVs in MS (HERV W) and MND (HERV K)
https://www.sciencedirect.com/science/article/pii/S0889159124006615?via%3Dihub
Ian Cook
I’m with everyone else- I don’t understand all the science and deeper implications but I always come up with a nugget or two that is another piece of the puzzle to my overall understanding of. MS. I particularly like when you summarize in “patient” language at the end so I can double check if I’m on the right track as I read. Have learned so much from you in the year and a half that I’ve subscribed. Thank you! Keep the new research and news from ECTRIMS coming!