Murray B. Bornstein (22 November 1917 - 31 August 1995) was the principal investigator on the original COP-1 trial that eventually led to the licensing of glatiramer acetate (Copaxone) ...
Thanks for keeping us up to date with your thinking. To answer your question, I'll badly paraphrase what I heard you say recently: if our goal isn't to find a cure, we'll never find one! After 39 years with MS, I think I'm pretty realistic about the obstacles and complexities in finding a cure, but I'm also hopeful - not that I myself will ever be cured, but that others who are much earlier in their disease course will be. I agree, by the way, that you still have many productive years left!
I had no idea glatiramer went back so far, this phase II clinical trial paper from 1987! Pre-clinical results must have been a surprise? Random polymers mimicking myelin basic protein didn't worsen EAE but improved it! And so Copaxone was licensed...
Amazing how far we've come, choice of anti inflammatory (active MS) treatments, trials for treating smouldering (progressive) MS, homing in on ebv and daring to look forward to a cure and prevention. I know that those of us living with more advanced MS get understandably frustrated that it's all too slow 🐌 but that's the way it is.
In answer to your question, you have miles to go before you sleep.
+1000. Absolutely start a new research program if that's what you're moved to do. People have won Nobel prizes in their 90s, so quit whining about how old you are. :)
Also, your colleagues' fear that talk about prevention and cures will cause people with MS to have unrealistic expectations and then be disappointed is a bunch of paternalistic garbage, and I hope you tell them I said so. What disappoints us is when the doctors who are supposed to be helping us treat us like we're a bunch of stupid, fragile children.
You are one of the few out there who *aren't* disappointing us. Thanks for fighting the good fight.
I am absolutely delighted that you are hoping to devote yourself to EBV research and eradication. I am convinced that this infection triggers the development of MS and until this is unraveled the rest is very expensive pissing in the wind.
Sixty is a land mark , but if you can set your own parameters of how much you want to work, then your best years are ahead of you! We need someone of your stature and knowledge to make this huge breakthrough!
If you don’t have a dream, how you gonna make a dream come true? I heard that in a song somewhere. Nearly sixty, but how old do you feel? I truly believe that a cure and a prevention of this disease is possible. I also believe that trauma has a part to play in the development of ms. I’m currently studying to become a counsellor and am really interested in how trauma affects the CNS.
I have so much admiration for you and the work you do. Please keep it going, and share with us. It’s people like you that give people like me so much hope. Thanks you, Sam.
In the 15 years since my diagnosis of MS, I've seen dramatic advancement in understanding the disease and in therapies, even if it's a lot of hit-and-miss and me-toos. At least now there is interest, and now we have you, someone who is focused on figuring out the complete puzzle. Please never stop pushing for the cure--I actually feel it's close and that you may be closer than you think.
1. Please keep on with P and C words! im not sure you have 'enough productive years' to do both of these(!) But i am sure that you can be (and are!) a vital part of moving both forward.
2. But please dont only work on the newly diagnosed . are you really simply waiting for us-earlier-diagnosed to die? surely theres much to learn from those of who had decades of independent life without meds? all my many marathons ultras were run - and i do mean run - with MS (tho no tshirt saying this)
3. Your recent (excellent, thankyou) explanatory work focuses so much on meds - please also at least mention exercise (and maybe more eg diet. mental health).
I fully agree I feel there should be someone somewhere willing to help bus older ones although having 2 daughters i.m fully supportive of the trials I would like to one day be a grandma who could help I sincerely hope someone is listening!!
You hit on something i often think of. I am 56 and my son only 20, but I would like to be a grandma someday. I worry I might not be able to hold a baby or that even if I can, I won't be able to ever spend time with a grandchild "unsupervised". That will break my heart.
I know this question is related to Q&A 3 but I was wondering if ATA188 is the same as the licensed prep Ebvallo (tabelecleucel), just a different indication, and will it be useful in providing information on the effect of ATA188 on EBV? I'm not sure if it is being used anywhere yet.
Please don't retire, isn't 60 young in academia!!! Many thanks for all your work and information you provide.
I echo all the positive sentiments stated in the comments! 60 is young and I selfishly want you to continue in the MS world, in whatever form and shape that takes. But as I mentioned in another post awhile back, you have accomplished and done so much in your life, it would be totally understandable is you wish to retire and enjoy yourself! But yeah, don't quit yet lol.
I will continue to effusively express my gratitude and appreciation for everything you have done and continue to do for PwMS! You are our diamond!
Boy, you do a lot of traveling doctor G and thank you for all of this. Had you been my provider I would still be walking today. All health care providers should be this way it would be a better world.
I know about epstein bar virus But my providers will not test me for it. How do we get universal testing for that virus. Is it a simple blood test ?
Also like I mentioned before many of us. Have HS V-2, and that is being ignored. How do we know that e b v is the only virus that causes m s I believe we need to test h s v two also. If we don't then the eventual e b v protocol will not work for pwMS with other viruses?
Thanks for keeping us up to date with your thinking. To answer your question, I'll badly paraphrase what I heard you say recently: if our goal isn't to find a cure, we'll never find one! After 39 years with MS, I think I'm pretty realistic about the obstacles and complexities in finding a cure, but I'm also hopeful - not that I myself will ever be cured, but that others who are much earlier in their disease course will be. I agree, by the way, that you still have many productive years left!
Ty, Pam. Penned perfectly❣️🌻
I had no idea glatiramer went back so far, this phase II clinical trial paper from 1987! Pre-clinical results must have been a surprise? Random polymers mimicking myelin basic protein didn't worsen EAE but improved it! And so Copaxone was licensed...
Amazing how far we've come, choice of anti inflammatory (active MS) treatments, trials for treating smouldering (progressive) MS, homing in on ebv and daring to look forward to a cure and prevention. I know that those of us living with more advanced MS get understandably frustrated that it's all too slow 🐌 but that's the way it is.
In answer to your question, you have miles to go before you sleep.
In Aug 1987 I was 23 years of age and now I am nearly 60. What happened?
Wisdom happened 👍
+1000. Absolutely start a new research program if that's what you're moved to do. People have won Nobel prizes in their 90s, so quit whining about how old you are. :)
Also, your colleagues' fear that talk about prevention and cures will cause people with MS to have unrealistic expectations and then be disappointed is a bunch of paternalistic garbage, and I hope you tell them I said so. What disappoints us is when the doctors who are supposed to be helping us treat us like we're a bunch of stupid, fragile children.
You are one of the few out there who *aren't* disappointing us. Thanks for fighting the good fight.
Prof G and Nobel prize? Yes, Yes, Yes. Absolutely Yes. We need you prof G :-)
I am absolutely delighted that you are hoping to devote yourself to EBV research and eradication. I am convinced that this infection triggers the development of MS and until this is unraveled the rest is very expensive pissing in the wind.
Sixty is a land mark , but if you can set your own parameters of how much you want to work, then your best years are ahead of you! We need someone of your stature and knowledge to make this huge breakthrough!
If you don’t have a dream, how you gonna make a dream come true? I heard that in a song somewhere. Nearly sixty, but how old do you feel? I truly believe that a cure and a prevention of this disease is possible. I also believe that trauma has a part to play in the development of ms. I’m currently studying to become a counsellor and am really interested in how trauma affects the CNS.
I have so much admiration for you and the work you do. Please keep it going, and share with us. It’s people like you that give people like me so much hope. Thanks you, Sam.
In the 15 years since my diagnosis of MS, I've seen dramatic advancement in understanding the disease and in therapies, even if it's a lot of hit-and-miss and me-toos. At least now there is interest, and now we have you, someone who is focused on figuring out the complete puzzle. Please never stop pushing for the cure--I actually feel it's close and that you may be closer than you think.
1. Please keep on with P and C words! im not sure you have 'enough productive years' to do both of these(!) But i am sure that you can be (and are!) a vital part of moving both forward.
2. But please dont only work on the newly diagnosed . are you really simply waiting for us-earlier-diagnosed to die? surely theres much to learn from those of who had decades of independent life without meds? all my many marathons ultras were run - and i do mean run - with MS (tho no tshirt saying this)
3. Your recent (excellent, thankyou) explanatory work focuses so much on meds - please also at least mention exercise (and maybe more eg diet. mental health).
THanks and best wishes
caroline mawer
I fully agree I feel there should be someone somewhere willing to help bus older ones although having 2 daughters i.m fully supportive of the trials I would like to one day be a grandma who could help I sincerely hope someone is listening!!
You hit on something i often think of. I am 56 and my son only 20, but I would like to be a grandma someday. I worry I might not be able to hold a baby or that even if I can, I won't be able to ever spend time with a grandchild "unsupervised". That will break my heart.
I know this question is related to Q&A 3 but I was wondering if ATA188 is the same as the licensed prep Ebvallo (tabelecleucel), just a different indication, and will it be useful in providing information on the effect of ATA188 on EBV? I'm not sure if it is being used anywhere yet.
Please don't retire, isn't 60 young in academia!!! Many thanks for all your work and information you provide.
I will answer this next week in a separate newsletter. They are similar but are different in terms of how they are generated.
We cant wait your next newsletter prof G :-)
Well done Professor G, it’s wonderfully work that you do, please don’t give up!
So agree with the comments already made...summarised as keep on keeping on :-)
I think you mentioned succession and I hope there are people working with you who want to - and can - take on the issues you are grappling with.
Thank you as always, including for not infantilising us!
I echo all the positive sentiments stated in the comments! 60 is young and I selfishly want you to continue in the MS world, in whatever form and shape that takes. But as I mentioned in another post awhile back, you have accomplished and done so much in your life, it would be totally understandable is you wish to retire and enjoy yourself! But yeah, don't quit yet lol.
I will continue to effusively express my gratitude and appreciation for everything you have done and continue to do for PwMS! You are our diamond!
Enjoy ECTRIMS!
-Karen
Boy, you do a lot of traveling doctor G and thank you for all of this. Had you been my provider I would still be walking today. All health care providers should be this way it would be a better world.
I know about epstein bar virus But my providers will not test me for it. How do we get universal testing for that virus. Is it a simple blood test ?
Also like I mentioned before many of us. Have HS V-2, and that is being ignored. How do we know that e b v is the only virus that causes m s I believe we need to test h s v two also. If we don't then the eventual e b v protocol will not work for pwMS with other viruses?
There is little point in testing for EBV once you have MS. In our experience all pwMS are infected with the virus.
Many thanks for your new post. Pls prof G continue your work. We all need you:-)