I’d certainly volunteer for CAR-T trials. There are currently few, if any, drugs or treatments that seem to make a real difference in secondary progressive MS - so it’s worth finding out whether CAR-T therapy would or could help - or even potentially cure - MS. Anyone who thinks that SPMS is not ‘bad’ enough to warrant the risks of taking part in any trials has clearly not had to live through decades with a chronic illness that progressively eats away at our lives and our hopes. So many illnesses that we once thought of as hopeless or incurable are now either curable or at least modifiable. We are very lucky to be living in an amazing era for medical breakthroughs. We will be able to do so much more for people with MS if we can somehow manage to tailor those scientific breakthroughs to treat or modify this ghastly disease.
I would gladly volunteer for a CAR T- cell therapy clinical trial but I know at my age 56, that my demographic is almost always eliminated from a pool of volunteers for clinical trials.
***Edited to add, after having this miserable disease for decades, I really feel like I have nothing left to lose. I will try all the things if not for myself, at least for any people in the future having to live through this miserable disease.
What are the possible risks? As I really don't have the time left in the course of my disease to either try or not to try anything without very good prospects VS extraordinary risks. Besides, I've already limited my chances of pulling through 'rough road' in any new treatments from all the stresses I have put on my genome from the myriad therapies I have tried already in the past twenty years.
Yes I would be interested in participating in a CAR T-cell Trial. I suspect though that I will be considered too old to be a trial subject at age 60. Good luck I really hope a trial in MS can be achieved.
Prof. G - you are so right to reject the assertion of colleagues that "such" current effective treatments for MS justify precluding the use of Car-T trials. Frankly it is infuriating that some folks are seemingly happy with the status quo. I trust if they or their loved one had MS their views would shift. Thank you for your advocacy.
Too risky for whom? I think the naysayers are risk averse and unwilling to discuss risk with their patients. Yes, I would volunteer to participate in CAR-T cell clinical trial.
“The good news is that three phase-1 CAR T-cell safety studies will be starting in MS, with several other companies planning to explore this technology in MS as well.” This is good news. But why is neurology always behind the pack eg rheumatology (lupus)? Tissue loss in MS much more devastating and irreparable.
“we have a battle on our hands to test CAR T-cells in MS. Many of my colleagues feel that this therapy is too risky for pwMS.” Your colleagues need to visit some care homes caring for those with advanced neurological diseases to really understand risk. Why would treating MS with Cart T-cells be more risky than for cancer or lupus?
Couldn’t the trial / experiment start really small eg 5 patients (no placebo) and see if the CAR T-cells clear OCBs in the spinal fluid?
With so many potential therapies on the horizon eg BTK inhibitors, Frexalimab, anti-virals, CAR T-cells, Ixazomib… any thoughts on which will have the greatest impact on smouldering MS?
Agreed most neurologists never mention sny trials or suggestions about what's available it's all down to patient research and daring to suggest a trial to your Neuro. 30+ years in put on the scap heap and severely fed up with the NHS algorithm that's still simply postcode lottery Gilly 😪😪
After 25years, it is clear that the current medications do not stop this disease. I am personally not a risk taker, and have to take into account my school aged children, but sometimes the challenges that MS presents makes me think it’s time to take a big chance.
Although I've completed 3 “rounds” of Lemtrada, which appear to have ceased new disease activist (NDA), should I encounter NDA or progression I would love to have the option of an alternative highly effective treatment.
I'm not sure about "EBV being necessary but not sufficient". As far as I'm aware there's at least one EBV-negative person without MS, that of course doesn't mean it doesn't play a crucially important role.
I would love to see a CD19 CAR T-cell trial in MS, go on press ahead with CD-19-targeted CAR T-cell therapies in MS! However, I expect that the above data will start becoming truely valuable once there is follow-up data has a duration of 5+ years. Then one will know more about the role of plasmablasts and B-cells. In the mean time, everything has to be set up to get the ball rollling once such longterm data is out, i.e. well done on getting the Phase 1 studies started!
The MS research community waited far too long to trial RTX, I hope they have learned from this mistake.
There are very few pwMS who are EBV negative. In our hands it was only 1 case in over a 1000 cases. The majority of EBV-ve children with MS have now turned out to have anti-MOG associated disease and not MS. Please be aware that the diagnostic criteria for MS are not 100% sensitive or specific. Post-mortem studies have shown that 1 in 20 pwMS in life turn out to have another disease. So EBV-ve MS may not be MS.
I certainly agree and see all these points, however that doesn't make the statement proven, 1/1000000 would still be enough for the statement to be wrong.
In any case, I appreciate your "EBV-advocacy" and can also appreciate somewhat harder claims that are true for almost all cases, especially when a majority of your colleagues are ignoring the EBV link.
I've been wandering if you know whether someone is working on replicating Ascherios work?
Why do neurologists, in my experience, throw patients 'under a bus', once they are diagnosed with SPMS leaving them with the attitude of there is nothing more I can do to help you. My neurologists line was "go away and enjoy your life " pretty hard to do with worsening disease, mobility and lack of meaningful funds available personally for use of getting help physically being able to physically mentally apply these recommended go swimming do pilates (not I might add suggested by my neurologist but my overwhelmed MS Nurse you have a 'chat with once a year if you’re lucky. Having said that for some reason my MS Nurse has now put me on 2yearly visits which I don't feel suitable of observes or indeed helps in any way keeping tabs on my MS journey and health physically mentally or otherwise. I suspect a large part of the problem is based on constructions of the Hospital Trust and funding ava to be spent on actually looking after patients health instead every single person has their hands tied by beurocratic just put a sticking plaster on it but don't spend NHS money on physically referring patients to meaningful help as help isn't there nor is maintaining help for patients who are simply left in limbo to just 'get on with it' whatever IT is but hit from every angle of cost cutting and now the Government targeting sick disabled with the utterly atrocious UC which is there to make sure you don't get financial help you're entitled to by having the algorithm of 'we give with one hand and take away with the other an no protection or future proofing for claimants ie a real living person trying not to get into debt, behind with utility bills and all the white eating healthily paying for prescriptions attending exercise classes swimming and having good mental health. Well news just in it's not working no money in for the last 4 months in our household the 'system' is s**t stressful humiliating and needs addressing before more people end up falling behind in society destroyed mental health physical wellbeing and a NHS system that is utterly broken 😢 💔 🔚🚧🛣 We're not criminals just simply a household of incurable Neurological diseases not self inflicted nor preventable. Gone rather off pistachio with all of this but that's exactly how the NHS is working or rather not working end of my tether. Haven't seen my Neurologist inc3 years and feel my appt in 3weeks will be wasted ny him simply wanting to get me in and out as quick as possible and giving me another ends label with no practical or meaningful help and I now don't seem to have the cognitive ability to stear the appointment to a positive conclusion of where Neuro might actually think 'I can do this for this patient' instead of saying 'go away and enjoy your life ' newsflash that's impossible bud easy for 'you' to say with your job, annual salary and power to say no all of these have sadly left the building for us. At the end of the day I'm just trying to survive on what's the bear minimum to sustain life and totally peed off disillusioned by this NMP (not my problem) society we live in. Sorry for the long rant but life's getting desperate to say the least. Gillyx 😭
I am sorry to hear this. Neurologists shouldn't give up when pwMS become secondary progressive. A lot can be done to improve the quality of life and outcome of someone with SPMS. Please read the MS-Selfie newsletters on marginal gains.
Thank you so much for taking the time to read and reply to my message. Sadly I thinks their reasoning will be largely based on the limitations the Heath Trust they work for mainly based on cost I know over the years I have had very few MRI scans contrast or otherwise, then when you ask to look at your latest and request what they see as changes or things to note in my experience information is very limited as if they are unsure of what the scan shows themselves. I have volunteered for 2 trials neither of which were suggested by Neuro I took it upon myself to look ?this should be common practice none of my local fellow MSsers feel like they're well informed either. Wouldn't mind but my current Consultant moved from Cambridge where he'd been involved in research and the hospital where he's working is a 'teaching' hospital doesn't make sense when he was apparently interested before coming to YDH what changed- policy and protocol probably. Kind regards Gilly
I’d certainly volunteer for CAR-T trials. There are currently few, if any, drugs or treatments that seem to make a real difference in secondary progressive MS - so it’s worth finding out whether CAR-T therapy would or could help - or even potentially cure - MS. Anyone who thinks that SPMS is not ‘bad’ enough to warrant the risks of taking part in any trials has clearly not had to live through decades with a chronic illness that progressively eats away at our lives and our hopes. So many illnesses that we once thought of as hopeless or incurable are now either curable or at least modifiable. We are very lucky to be living in an amazing era for medical breakthroughs. We will be able to do so much more for people with MS if we can somehow manage to tailor those scientific breakthroughs to treat or modify this ghastly disease.
I made a Facebook group for patients undergoig CAR-T treatment for autoimmune illness.
Some of te members have already had CAR-T done in Germany, USA, and China.
So please join the group
https://www.facebook.com/groups/cartautoimmune
"we have such effective licensed treatments for MS"? What? Where?
Yeah, that really chapped my hide too!
I probably wouldn't qualify, since I'm between rounds of Mavenclad/cladribine, but I'd certainly be interested if I weren't.
The idea that there are neurologists who think the current state of play for MS is ok is straight-up horrifying.
Right? I mean seriously? It is straight up horrifying!
I would gladly volunteer for a CAR T- cell therapy clinical trial but I know at my age 56, that my demographic is almost always eliminated from a pool of volunteers for clinical trials.
***Edited to add, after having this miserable disease for decades, I really feel like I have nothing left to lose. I will try all the things if not for myself, at least for any people in the future having to live through this miserable disease.
What are the possible risks? As I really don't have the time left in the course of my disease to either try or not to try anything without very good prospects VS extraordinary risks. Besides, I've already limited my chances of pulling through 'rough road' in any new treatments from all the stresses I have put on my genome from the myriad therapies I have tried already in the past twenty years.
Yes I would be interested in participating in a CAR T-cell Trial. I suspect though that I will be considered too old to be a trial subject at age 60. Good luck I really hope a trial in MS can be achieved.
And another editorial making the case for CAR T-cells in MS.
https://www.nature.com/articles/d41586-024-00470-5
Prof. G - you are so right to reject the assertion of colleagues that "such" current effective treatments for MS justify precluding the use of Car-T trials. Frankly it is infuriating that some folks are seemingly happy with the status quo. I trust if they or their loved one had MS their views would shift. Thank you for your advocacy.
Too risky for whom? I think the naysayers are risk averse and unwilling to discuss risk with their patients. Yes, I would volunteer to participate in CAR-T cell clinical trial.
Thanks for this post.
“The good news is that three phase-1 CAR T-cell safety studies will be starting in MS, with several other companies planning to explore this technology in MS as well.” This is good news. But why is neurology always behind the pack eg rheumatology (lupus)? Tissue loss in MS much more devastating and irreparable.
“we have a battle on our hands to test CAR T-cells in MS. Many of my colleagues feel that this therapy is too risky for pwMS.” Your colleagues need to visit some care homes caring for those with advanced neurological diseases to really understand risk. Why would treating MS with Cart T-cells be more risky than for cancer or lupus?
Couldn’t the trial / experiment start really small eg 5 patients (no placebo) and see if the CAR T-cells clear OCBs in the spinal fluid?
With so many potential therapies on the horizon eg BTK inhibitors, Frexalimab, anti-virals, CAR T-cells, Ixazomib… any thoughts on which will have the greatest impact on smouldering MS?
Agreed most neurologists never mention sny trials or suggestions about what's available it's all down to patient research and daring to suggest a trial to your Neuro. 30+ years in put on the scap heap and severely fed up with the NHS algorithm that's still simply postcode lottery Gilly 😪😪
After 25years, it is clear that the current medications do not stop this disease. I am personally not a risk taker, and have to take into account my school aged children, but sometimes the challenges that MS presents makes me think it’s time to take a big chance.
Although I've completed 3 “rounds” of Lemtrada, which appear to have ceased new disease activist (NDA), should I encounter NDA or progression I would love to have the option of an alternative highly effective treatment.
100% agree with pressing ahead.
I'm not sure about "EBV being necessary but not sufficient". As far as I'm aware there's at least one EBV-negative person without MS, that of course doesn't mean it doesn't play a crucially important role.
I would love to see a CD19 CAR T-cell trial in MS, go on press ahead with CD-19-targeted CAR T-cell therapies in MS! However, I expect that the above data will start becoming truely valuable once there is follow-up data has a duration of 5+ years. Then one will know more about the role of plasmablasts and B-cells. In the mean time, everything has to be set up to get the ball rollling once such longterm data is out, i.e. well done on getting the Phase 1 studies started!
The MS research community waited far too long to trial RTX, I hope they have learned from this mistake.
There are very few pwMS who are EBV negative. In our hands it was only 1 case in over a 1000 cases. The majority of EBV-ve children with MS have now turned out to have anti-MOG associated disease and not MS. Please be aware that the diagnostic criteria for MS are not 100% sensitive or specific. Post-mortem studies have shown that 1 in 20 pwMS in life turn out to have another disease. So EBV-ve MS may not be MS.
I certainly agree and see all these points, however that doesn't make the statement proven, 1/1000000 would still be enough for the statement to be wrong.
In any case, I appreciate your "EBV-advocacy" and can also appreciate somewhat harder claims that are true for almost all cases, especially when a majority of your colleagues are ignoring the EBV link.
I've been wandering if you know whether someone is working on replicating Ascherios work?
Vietzen H, Berger SM, Kühner LM, Furlano PL, Bsteh G, Berger T, Rommer P, Puchhammer-Stöckl E. Ineffective control of Epstein-Barr-virus-induced autoimmunity increases the risk for multiple sclerosis. Cell. 2023 Dec 21;186(26):5705-5718.e13. doi: 10.1016/j.cell.2023.11.015. Epub 2023 Dec 12. PMID: 38091993.
I do have some concerns about this paper.
Thanks, I've seen this paper and I have some concerns about this paper as well.
I don't think that this paper adds much to the Ascherio paper, is a replication or builds upon that paper to much.
The Ascherio paper was a gamechanger to me. To me this paper might just be false hope that leads nowhere...
Why do neurologists, in my experience, throw patients 'under a bus', once they are diagnosed with SPMS leaving them with the attitude of there is nothing more I can do to help you. My neurologists line was "go away and enjoy your life " pretty hard to do with worsening disease, mobility and lack of meaningful funds available personally for use of getting help physically being able to physically mentally apply these recommended go swimming do pilates (not I might add suggested by my neurologist but my overwhelmed MS Nurse you have a 'chat with once a year if you’re lucky. Having said that for some reason my MS Nurse has now put me on 2yearly visits which I don't feel suitable of observes or indeed helps in any way keeping tabs on my MS journey and health physically mentally or otherwise. I suspect a large part of the problem is based on constructions of the Hospital Trust and funding ava to be spent on actually looking after patients health instead every single person has their hands tied by beurocratic just put a sticking plaster on it but don't spend NHS money on physically referring patients to meaningful help as help isn't there nor is maintaining help for patients who are simply left in limbo to just 'get on with it' whatever IT is but hit from every angle of cost cutting and now the Government targeting sick disabled with the utterly atrocious UC which is there to make sure you don't get financial help you're entitled to by having the algorithm of 'we give with one hand and take away with the other an no protection or future proofing for claimants ie a real living person trying not to get into debt, behind with utility bills and all the white eating healthily paying for prescriptions attending exercise classes swimming and having good mental health. Well news just in it's not working no money in for the last 4 months in our household the 'system' is s**t stressful humiliating and needs addressing before more people end up falling behind in society destroyed mental health physical wellbeing and a NHS system that is utterly broken 😢 💔 🔚🚧🛣 We're not criminals just simply a household of incurable Neurological diseases not self inflicted nor preventable. Gone rather off pistachio with all of this but that's exactly how the NHS is working or rather not working end of my tether. Haven't seen my Neurologist inc3 years and feel my appt in 3weeks will be wasted ny him simply wanting to get me in and out as quick as possible and giving me another ends label with no practical or meaningful help and I now don't seem to have the cognitive ability to stear the appointment to a positive conclusion of where Neuro might actually think 'I can do this for this patient' instead of saying 'go away and enjoy your life ' newsflash that's impossible bud easy for 'you' to say with your job, annual salary and power to say no all of these have sadly left the building for us. At the end of the day I'm just trying to survive on what's the bear minimum to sustain life and totally peed off disillusioned by this NMP (not my problem) society we live in. Sorry for the long rant but life's getting desperate to say the least. Gillyx 😭
I am sorry to hear this. Neurologists shouldn't give up when pwMS become secondary progressive. A lot can be done to improve the quality of life and outcome of someone with SPMS. Please read the MS-Selfie newsletters on marginal gains.
https://gavingiovannoni.substack.com/p/metabolic-health?utm_source=publication-search
Thank you so much for taking the time to read and reply to my message. Sadly I thinks their reasoning will be largely based on the limitations the Heath Trust they work for mainly based on cost I know over the years I have had very few MRI scans contrast or otherwise, then when you ask to look at your latest and request what they see as changes or things to note in my experience information is very limited as if they are unsure of what the scan shows themselves. I have volunteered for 2 trials neither of which were suggested by Neuro I took it upon myself to look ?this should be common practice none of my local fellow MSsers feel like they're well informed either. Wouldn't mind but my current Consultant moved from Cambridge where he'd been involved in research and the hospital where he's working is a 'teaching' hospital doesn't make sense when he was apparently interested before coming to YDH what changed- policy and protocol probably. Kind regards Gilly