Do we have to use AHSCT an immunological sledgehammer to treat MS? Can't we use something simpler like a targeted immunotherapy or an antiviral to control EBV?
My 19 yr old daughter is 3 months post HSCT, hopefully the treatment will serve her well but if it doesn’t in the long term would she, in theory, be able to look into CAR-T or would having had HSCT automatically mean CAR-T would be unsuitable?
Being so young we are as confident as you can be that she’s done the right thing for now but who knows what the future holds.
We were also at the AIMS meeting last weekend. My daughter took part in one of the Q&A sessions - she’s keen to share her story and highlight the fact that kids get MS too and early diagnosis/treatment is vital.
Dec 2, 2023·edited Dec 2, 2023Liked by Gavin Giovannoni
First, thanks for attending a conference of enormous interest to patients as much as researchers. I believe the lack of naysayers wasn't through lack of trying by AIMS... It's a shame other neurologists didn't want to be part of the conversation (or refer people onto trials like StarMS).
The key point for me was from Dr Burt: "Regimes are not created equal." Many AHSCT fans seem to be happy to go ahead based on the 'principle' of the cyclophosphamide and immune system ablation being the same - even though the methodology is very different from that used in huge clinical trials. In my opinion, that is misguided. Would we take a drug 'as read' because its principle is the same as one that's gone through a scrutinized clinical trial? I know I wouldn't.
I made the same points as you in the feedback survey... There should also be some element of debate. Dr B calls Lemtrada 'liquid HIV'. He is one of the most highly respected haemos on the planet. You, a global expert neuro, say it should be an option first line. What is a patient to do. Let's explore issues like that.
It's all very well people talking about exciting research but It. Takes. Too. Long. Look at HSCT. How long have we been discussing this for ? We have had global studies, and yet now we need more trials comparing it to "newer" DMTs. In a world where 'Time is Brain' how long should we wait around for these new therapies?
I found one country's marketing so biased and slick it was distasteful. EG the use of 'Scientific papers' in their own name. If I publish a paper saying 'Susie is wonderful' and get it published on a quasi scientific site it does not make it so. (Unfortunately).
In my own case, one expert at the conference said do it, another said don't. My current neuro says don't yet. A private neuro said he wouldn't stop me. Another neuro wouldn't even discuss it. It's a classic case where you feel whatever you do is wrong.
But I am getting tired of people treating me like I'm stupid for scrutinizing it. Your slide on smouldering/worsening despite AHSCT makes sobering reading.
RE the sledgehammer - maybe that's how we should approach it...? If I need to knock down a wall, I wouldn't use a pair of scissors. You yourself have said you'd want AHSCT as an option first line?
As for EBV activation, my understanding is that this happens regularly with ATG, which is perhaps one reason why people seek AHSCT abroad where they use rituximab...?
Anyway, as Karen said below this was a huge achievement by AIMS when they're battling a lack of support from most UK neuros. I for one greatly valued the opportunity to meet top neurologists - including you, and I felt virtuous I'm a paid subscriber!! :)
Dec 2, 2023·edited Dec 2, 2023Liked by Gavin Giovannoni
Part of MS is the aging component.
The average PwMS develops MS in their twenties and is treated from onset of symptoms:
- usually in their 20s,
- hopefully before they hit their 30s but sadly, due to all sorts of factors (not least medical gaslighting)
- often starting in their 40s or later.
They will have been accumulating neuronal damage since their 20s. So of course they may be detected at the point where they become increasingly progressive.
If we are saying that aHSCT is more effective on young people, I believe that to be a fallacy. We haven't been testing it long enough to really know that. I'm willing to bet good money that these young people, in two or three decades, will start to show signs of progression.
I believe this is because they are being implanted with autologous stem cells from their own faulty immune system. My profession is IT so I know only too well that there are times when shutting down and restarting the computer will “fix” the problem but overall, if the solder has started to corrode or the circuit boards have overheated, over time the requirement to reboot will become sufficiently frequent that the computer itself has to be “retired” and scrapped.
This is not really an option we have with humans.
I would be interested to see how progress with Frexalimab goes. I believe that a monotherapy to block the specific ligand communication pathway between EBV-infected B-cells and the T-cells they co-opt into attacking myelin could be as successful in MS as it is proving to be in lupus.
This has the advantage that the immune system is not suppressed in any meaningful way. It has the advantage of co-opting T cells the same way that CAR-T does but without the risks. I believe it could be very useful in not only reducing “MRI activity” but also in controlling progression seen in patients with CD20 suppression and those who have had aHSCT. Though if it works that well, and if the risks are as limited as they seem to be, it will hopefully become a first-line treatment and patients won't get to the progressive stage in the first place.
In the 1990s we had the interferons, in the 2000s the monoclonal anti-bodies, in the 2010s the anti-CD20s [from the mid 2020s we may see a glut of BTK inhibitors]. These first three categories of treatments all came with promise, but in reality none could really shut down MS for good (the underlying smouldering MS causing unrelenting worsening disability). The connection between MS and EBV was first acknowledged in the 1980s, but an effective vaccine or highly effective anti-viral are yet to emerge. I won’t mention the various remyelination trials that have failed over the years.
Nearly half way through the 2020s and the spotlight turns to CAR T-cell cells and our old friend the illusive ebv vaccine:
“The good news is that a few pharmaceutical companies are progressing with CAR T-cell studies in MS. I hope they will start in the new year.”
“It may interest you that at least one vaccine company is developing a therapeutic EBV vaccine to treat MS.”
In reality CAR T-cells and an EBV vaccine, if successful in trials, won’t be available for another decade (mid-2030s). Will the BTK inhibitors just be a stop gap until CAR T-cells and / or an ebv vaccine or anti-viral arrives? Will CAR T-cells and an EBV vaccine deliver what patients really want (stopping progression in its tracks), or will there be other treatments beyond these to keep the huge MS industry (researchers and pharma companies) going beyond 2050?
I cannot be sure that you are referring to me, but I know I did tell you that I have a new immune system thanks to HSCT with Dr. Burt 4.5 years ago and am now healthier than I have been in my entire adult life, having been diagnosed with MS almost 20 years ago. The sledgehammer, as you call it, works.
95% of the public has had the EBV at some point in their life. I recall the correlation between EBV being made upon my MS diagnosis almost 20 years ago. How many more times is the medical community going to recycle this “news” like it is new and act like there is some breakthrough on the horizon when there is not?
Issues of DMD vs HSCT have always been at the forefront of decision-making about transplantation. They always try to denigrate transplantation as a non-traditional (quack) method. Many patients can be confused; information in medicine should be carefully assessed before publication. What is my opinion on this topic (shortly, we need to avoid war of words — in can’t help in MS treatment). Position of dr. Gavin is only his opinion, not confirmed by clinical trials. Effectiveness and safety of HSCT has been proved by 20 years of experience. Nowadays, HSCT is the most effective approach for MS. It has been proved by many clinical trials and by experience of many centers. CAR-T therapy is further developing of immune-based treatment and possible good option in future. First HSCT for MS was performed in 1997, and only 10 years later we had long-term results and confirmation of effectiveness. Another 10 years left to improve treatment program (all together — 20 years). The same way we will have to pass for CAR-T therapy. None patient with MS have been treated by CAR-T therapy (only discussions and short-term experience of 5 lupus patients). Of course, we need to think about future, but we also need to understand how to provide CAR-T therapy directly for MS. Lupus is traditional B-cell related disease so anti CD19 CAR-T therapy is good here. MS is another condition and our immunological team is developing CAR-T therapy protocol exclusively for MS. We and prof. R. Burt are on the same position - CAR-T therapy against CD19 (like for lupus) won’t be effective. We need to act on the deep pathogenesis of MS. We have developed TrecTCR-T protocol — T reg cell activation on specific MS target - Myelin based protein (MBP 85-99). It will effect on mechanism of MS developing. We are going to treat five patients in 2024. I think, it will be the first experience in the world. But, we are going to treat 5 patients with relapse after HSCT. What about HSCT failure — effectiveness is 70-95%, so its logic that relapse/progression rate is 5-30% depending of many factors (we discussed it during meeting). However, nowadays, this result is 10 times better than traditional treatment. Only 10-15 years will show the result of CAR-T therapy. We cannot predict now, that CAR-T will be better than HSCT. Another position is EBV reactivation — I try to send our message — if we use right protocol, we can exclude this complication. We should avoid Alemtuzumab and ATG in conditioning. The rate of EBV reactivation in our center is 0%, because we do not use ATG and Alemtuzumab I hope my position is clear. I think Richard Burt has the same opinion, we discussed all these questions personally. Richard is the most experienced in the world. This is my opinion shortly. Thank you very much for your support and energy you spend to help all MS patients Dr.Denis Fedorenko MD, PhD, DSc, Professor of the Department of Hematology and Stem Cell Therapy, National Medical and Surgical Center named after N.I. Pirogov. email: info@hsct-russia.com
Professor, I hear you re AHSCT being a sledgehammer.
I tried to push for it when it first became available on the NHS. I failed - my RRMS diagnosis was quickly changed to SPMS, and therein my pursuit ended.....But I'd have taken the sledgehammer for the possibility of a slowdown of the smouldering. At times it is overwhelming.
I am pleased and grateful that you were there to speak and challenge thinking. We need more neuros like you - more who should be prepared to be wrong, or to give an alternative theory some merit, or to even show up and ask questions.
I’m glad you brought up a couple of key points the extreme aHSCT pro folks either don’t bring up or just hush hush. I should state absolutely that aHSCT is the best and strongest treatment option we have at the moment (tho I’d say lemtrada wouldn’t be far off)
There is a mortality risk that needs to be discussed
Infertility is a serious risk especially in young women
And the fact that it isn’t effective in a pretty large group of people. I’d wager lemtrada to be equally as effective once the studies from the star trial? Come back to us or at least very close
The other considerations are time off work and infection risk. This is a serious regime so not everyone can take the time required off work and away from family to do aHSCT. The infection risks with Covid etc are also at a higher risk and so all of this needs to be planned ahead.
I think Car T therapies personally would have a better effect and approach overall as it seems more targeted.
Agreed, We need a full healthy debate aHSCT and all therapies. I see the same fight against naysayers as destructive of possible fruitful efforts to corroborate data and brainstorm.. not to mention save $ in research.. Dr. Richard Burt complained about fiefdoms.
Those who There are those like Burt, Ruiz and Fedorenko and others who to my understandingbelieve non myelo is the way to go. I 've hear Richard Burt detail the non myelo regiment not being inferior as the use in MS/auto immune is not with the same requirements as cancer.,,it doesn't help uniting efforts from experts on many sides that there is a big pharma presencevpaying neurologists a lot of money for speaking etc.
1/50 mortality rate? I've consistently heard a much more favourable rates even for not only myelo ablative nut non myeloablative HSCT methods.
Why does hsct work for some and not others - smoldering? and, if so, is it possible that it is working to the extent that with without the hsct there would often be more new disease activity and hence more damage and eventually more smoldering. I'm assuming u can only have smoldering on already existing MS scarring.. I also don't know what to make of my current 2 1/2 month post mexican non myelo HSCT. (M 59 PPMS) My immune system didn't take a big hit and my first CBC showed everything coming back only hemoglobin /hemacrit and one other were slightly low. Of course long term outcome is my main concern. Balance is about the same maybe slightly worse. EDSS still 3.5 ish although leg spasticity is slightly worse. What is this much talked about HSCT roller coaster. On the post HSCT forums a there were lots of testimonies that their spasticity subsided on after months or often beyond a year's time. Also it sounds like those who were proactive in exercise had better results.. that's not an easily measurable stat however I think the 'use it or lose it' testimonys apply to all humans of all ages not most obviously the aged
I hear that spasticity is found in most recipients.
There are endless confounders which make this quite the fasciting mystery.
I do feel AHSCT is a sledgehammer with many risks (including EBV-reactivation) with only partial results as an MS 'cure'. So interesting to read about more fine-tuned options.
By the way, I feel like I'm living proof that my EBV-specific T cells are not working to keep the virus at bay. From what I gather, some of our current DMTS are also decreasing memory T cells, which increases the risk of having EBV-reactivations, and which also makes me wonder about their efficacity against MS.
Thank you for sharing your thoughts and information. I had HSCT in Moscow in 2016. AIMS is a tiny charity ran by volunteers and the event was a massive undertaking. The naysayers along with every neuro and Ms nurse were invited. The aim was sharing knowledge and inspiring change which I think was achieved. CAR-T and IPS and other future treatments brings more hope in the field of MS
Thanks Gavin! Could you let us know how far into the future we could expect access to a CAR-T treatment? Also are there are EBV antiviral treatments that we could access now, even if privately or through a trial? I am not sure how to see your responses to our comments but hopefully you will be able to respond in a future newsletter. I am particularly interested in your thoughts on my second question. Thank you!
Dear Gavin, I‘m aware of BioNTech doing first studies on CAR–T therapy for pwMS. Please advise who out of the pharma accounts is doing first studies. I‘d like to volunteer. Thx. Michael
My 19 yr old daughter is 3 months post HSCT, hopefully the treatment will serve her well but if it doesn’t in the long term would she, in theory, be able to look into CAR-T or would having had HSCT automatically mean CAR-T would be unsuitable?
Being so young we are as confident as you can be that she’s done the right thing for now but who knows what the future holds.
We were also at the AIMS meeting last weekend. My daughter took part in one of the Q&A sessions - she’s keen to share her story and highlight the fact that kids get MS too and early diagnosis/treatment is vital.
First, thanks for attending a conference of enormous interest to patients as much as researchers. I believe the lack of naysayers wasn't through lack of trying by AIMS... It's a shame other neurologists didn't want to be part of the conversation (or refer people onto trials like StarMS).
The key point for me was from Dr Burt: "Regimes are not created equal." Many AHSCT fans seem to be happy to go ahead based on the 'principle' of the cyclophosphamide and immune system ablation being the same - even though the methodology is very different from that used in huge clinical trials. In my opinion, that is misguided. Would we take a drug 'as read' because its principle is the same as one that's gone through a scrutinized clinical trial? I know I wouldn't.
I made the same points as you in the feedback survey... There should also be some element of debate. Dr B calls Lemtrada 'liquid HIV'. He is one of the most highly respected haemos on the planet. You, a global expert neuro, say it should be an option first line. What is a patient to do. Let's explore issues like that.
It's all very well people talking about exciting research but It. Takes. Too. Long. Look at HSCT. How long have we been discussing this for ? We have had global studies, and yet now we need more trials comparing it to "newer" DMTs. In a world where 'Time is Brain' how long should we wait around for these new therapies?
I found one country's marketing so biased and slick it was distasteful. EG the use of 'Scientific papers' in their own name. If I publish a paper saying 'Susie is wonderful' and get it published on a quasi scientific site it does not make it so. (Unfortunately).
In my own case, one expert at the conference said do it, another said don't. My current neuro says don't yet. A private neuro said he wouldn't stop me. Another neuro wouldn't even discuss it. It's a classic case where you feel whatever you do is wrong.
But I am getting tired of people treating me like I'm stupid for scrutinizing it. Your slide on smouldering/worsening despite AHSCT makes sobering reading.
RE the sledgehammer - maybe that's how we should approach it...? If I need to knock down a wall, I wouldn't use a pair of scissors. You yourself have said you'd want AHSCT as an option first line?
As for EBV activation, my understanding is that this happens regularly with ATG, which is perhaps one reason why people seek AHSCT abroad where they use rituximab...?
Anyway, as Karen said below this was a huge achievement by AIMS when they're battling a lack of support from most UK neuros. I for one greatly valued the opportunity to meet top neurologists - including you, and I felt virtuous I'm a paid subscriber!! :)
Part of MS is the aging component.
The average PwMS develops MS in their twenties and is treated from onset of symptoms:
- usually in their 20s,
- hopefully before they hit their 30s but sadly, due to all sorts of factors (not least medical gaslighting)
- often starting in their 40s or later.
They will have been accumulating neuronal damage since their 20s. So of course they may be detected at the point where they become increasingly progressive.
If we are saying that aHSCT is more effective on young people, I believe that to be a fallacy. We haven't been testing it long enough to really know that. I'm willing to bet good money that these young people, in two or three decades, will start to show signs of progression.
I believe this is because they are being implanted with autologous stem cells from their own faulty immune system. My profession is IT so I know only too well that there are times when shutting down and restarting the computer will “fix” the problem but overall, if the solder has started to corrode or the circuit boards have overheated, over time the requirement to reboot will become sufficiently frequent that the computer itself has to be “retired” and scrapped.
This is not really an option we have with humans.
I would be interested to see how progress with Frexalimab goes. I believe that a monotherapy to block the specific ligand communication pathway between EBV-infected B-cells and the T-cells they co-opt into attacking myelin could be as successful in MS as it is proving to be in lupus.
This has the advantage that the immune system is not suppressed in any meaningful way. It has the advantage of co-opting T cells the same way that CAR-T does but without the risks. I believe it could be very useful in not only reducing “MRI activity” but also in controlling progression seen in patients with CD20 suppression and those who have had aHSCT. Though if it works that well, and if the risks are as limited as they seem to be, it will hopefully become a first-line treatment and patients won't get to the progressive stage in the first place.
In the 1990s we had the interferons, in the 2000s the monoclonal anti-bodies, in the 2010s the anti-CD20s [from the mid 2020s we may see a glut of BTK inhibitors]. These first three categories of treatments all came with promise, but in reality none could really shut down MS for good (the underlying smouldering MS causing unrelenting worsening disability). The connection between MS and EBV was first acknowledged in the 1980s, but an effective vaccine or highly effective anti-viral are yet to emerge. I won’t mention the various remyelination trials that have failed over the years.
Nearly half way through the 2020s and the spotlight turns to CAR T-cell cells and our old friend the illusive ebv vaccine:
“The good news is that a few pharmaceutical companies are progressing with CAR T-cell studies in MS. I hope they will start in the new year.”
“It may interest you that at least one vaccine company is developing a therapeutic EBV vaccine to treat MS.”
In reality CAR T-cells and an EBV vaccine, if successful in trials, won’t be available for another decade (mid-2030s). Will the BTK inhibitors just be a stop gap until CAR T-cells and / or an ebv vaccine or anti-viral arrives? Will CAR T-cells and an EBV vaccine deliver what patients really want (stopping progression in its tracks), or will there be other treatments beyond these to keep the huge MS industry (researchers and pharma companies) going beyond 2050?
https://www.facebook.com/groups/cartautoimmune
I made a FB group for people undergoing CAR-T for various autoimmne illnesses. Some members have already done it in Germany or China.
Still quite quiet in the group but that will change.
I invite anyone interested and anyone who will do CAR-T to join
I cannot be sure that you are referring to me, but I know I did tell you that I have a new immune system thanks to HSCT with Dr. Burt 4.5 years ago and am now healthier than I have been in my entire adult life, having been diagnosed with MS almost 20 years ago. The sledgehammer, as you call it, works.
95% of the public has had the EBV at some point in their life. I recall the correlation between EBV being made upon my MS diagnosis almost 20 years ago. How many more times is the medical community going to recycle this “news” like it is new and act like there is some breakthrough on the horizon when there is not?
Email response:
Issues of DMD vs HSCT have always been at the forefront of decision-making about transplantation. They always try to denigrate transplantation as a non-traditional (quack) method. Many patients can be confused; information in medicine should be carefully assessed before publication. What is my opinion on this topic (shortly, we need to avoid war of words — in can’t help in MS treatment). Position of dr. Gavin is only his opinion, not confirmed by clinical trials. Effectiveness and safety of HSCT has been proved by 20 years of experience. Nowadays, HSCT is the most effective approach for MS. It has been proved by many clinical trials and by experience of many centers. CAR-T therapy is further developing of immune-based treatment and possible good option in future. First HSCT for MS was performed in 1997, and only 10 years later we had long-term results and confirmation of effectiveness. Another 10 years left to improve treatment program (all together — 20 years). The same way we will have to pass for CAR-T therapy. None patient with MS have been treated by CAR-T therapy (only discussions and short-term experience of 5 lupus patients). Of course, we need to think about future, but we also need to understand how to provide CAR-T therapy directly for MS. Lupus is traditional B-cell related disease so anti CD19 CAR-T therapy is good here. MS is another condition and our immunological team is developing CAR-T therapy protocol exclusively for MS. We and prof. R. Burt are on the same position - CAR-T therapy against CD19 (like for lupus) won’t be effective. We need to act on the deep pathogenesis of MS. We have developed TrecTCR-T protocol — T reg cell activation on specific MS target - Myelin based protein (MBP 85-99). It will effect on mechanism of MS developing. We are going to treat five patients in 2024. I think, it will be the first experience in the world. But, we are going to treat 5 patients with relapse after HSCT. What about HSCT failure — effectiveness is 70-95%, so its logic that relapse/progression rate is 5-30% depending of many factors (we discussed it during meeting). However, nowadays, this result is 10 times better than traditional treatment. Only 10-15 years will show the result of CAR-T therapy. We cannot predict now, that CAR-T will be better than HSCT. Another position is EBV reactivation — I try to send our message — if we use right protocol, we can exclude this complication. We should avoid Alemtuzumab and ATG in conditioning. The rate of EBV reactivation in our center is 0%, because we do not use ATG and Alemtuzumab I hope my position is clear. I think Richard Burt has the same opinion, we discussed all these questions personally. Richard is the most experienced in the world. This is my opinion shortly. Thank you very much for your support and energy you spend to help all MS patients Dr.Denis Fedorenko MD, PhD, DSc, Professor of the Department of Hematology and Stem Cell Therapy, National Medical and Surgical Center named after N.I. Pirogov. email: info@hsct-russia.com
Professor, I hear you re AHSCT being a sledgehammer.
I tried to push for it when it first became available on the NHS. I failed - my RRMS diagnosis was quickly changed to SPMS, and therein my pursuit ended.....But I'd have taken the sledgehammer for the possibility of a slowdown of the smouldering. At times it is overwhelming.
I am pleased and grateful that you were there to speak and challenge thinking. We need more neuros like you - more who should be prepared to be wrong, or to give an alternative theory some merit, or to even show up and ask questions.
Thank you
https://www.medpagetoday.com/hematologyoncology/hematology/107569
I’m glad you brought up a couple of key points the extreme aHSCT pro folks either don’t bring up or just hush hush. I should state absolutely that aHSCT is the best and strongest treatment option we have at the moment (tho I’d say lemtrada wouldn’t be far off)
There is a mortality risk that needs to be discussed
Infertility is a serious risk especially in young women
And the fact that it isn’t effective in a pretty large group of people. I’d wager lemtrada to be equally as effective once the studies from the star trial? Come back to us or at least very close
The other considerations are time off work and infection risk. This is a serious regime so not everyone can take the time required off work and away from family to do aHSCT. The infection risks with Covid etc are also at a higher risk and so all of this needs to be planned ahead.
I think Car T therapies personally would have a better effect and approach overall as it seems more targeted.
Agreed, We need a full healthy debate aHSCT and all therapies. I see the same fight against naysayers as destructive of possible fruitful efforts to corroborate data and brainstorm.. not to mention save $ in research.. Dr. Richard Burt complained about fiefdoms.
Those who There are those like Burt, Ruiz and Fedorenko and others who to my understandingbelieve non myelo is the way to go. I 've hear Richard Burt detail the non myelo regiment not being inferior as the use in MS/auto immune is not with the same requirements as cancer.,,it doesn't help uniting efforts from experts on many sides that there is a big pharma presencevpaying neurologists a lot of money for speaking etc.
1/50 mortality rate? I've consistently heard a much more favourable rates even for not only myelo ablative nut non myeloablative HSCT methods.
Why does hsct work for some and not others - smoldering? and, if so, is it possible that it is working to the extent that with without the hsct there would often be more new disease activity and hence more damage and eventually more smoldering. I'm assuming u can only have smoldering on already existing MS scarring.. I also don't know what to make of my current 2 1/2 month post mexican non myelo HSCT. (M 59 PPMS) My immune system didn't take a big hit and my first CBC showed everything coming back only hemoglobin /hemacrit and one other were slightly low. Of course long term outcome is my main concern. Balance is about the same maybe slightly worse. EDSS still 3.5 ish although leg spasticity is slightly worse. What is this much talked about HSCT roller coaster. On the post HSCT forums a there were lots of testimonies that their spasticity subsided on after months or often beyond a year's time. Also it sounds like those who were proactive in exercise had better results.. that's not an easily measurable stat however I think the 'use it or lose it' testimonys apply to all humans of all ages not most obviously the aged
I hear that spasticity is found in most recipients.
There are endless confounders which make this quite the fasciting mystery.
Much gratitude Dr. Giavanonni.
I do feel AHSCT is a sledgehammer with many risks (including EBV-reactivation) with only partial results as an MS 'cure'. So interesting to read about more fine-tuned options.
By the way, I feel like I'm living proof that my EBV-specific T cells are not working to keep the virus at bay. From what I gather, some of our current DMTS are also decreasing memory T cells, which increases the risk of having EBV-reactivations, and which also makes me wonder about their efficacity against MS.
Thank you for sharing your thoughts and information. I had HSCT in Moscow in 2016. AIMS is a tiny charity ran by volunteers and the event was a massive undertaking. The naysayers along with every neuro and Ms nurse were invited. The aim was sharing knowledge and inspiring change which I think was achieved. CAR-T and IPS and other future treatments brings more hope in the field of MS
Thanks Gavin! Could you let us know how far into the future we could expect access to a CAR-T treatment? Also are there are EBV antiviral treatments that we could access now, even if privately or through a trial? I am not sure how to see your responses to our comments but hopefully you will be able to respond in a future newsletter. I am particularly interested in your thoughts on my second question. Thank you!
Rs Would you be interested in participating in one of these trials?
Depends on where the trial is taking place and how much disruption it would require
Re Or do you consider them too risky?
How risky will they be, as compared to undergoing AHSCT for example? What are the risks?
Dear Gavin, I‘m aware of BioNTech doing first studies on CAR–T therapy for pwMS. Please advise who out of the pharma accounts is doing first studies. I‘d like to volunteer. Thx. Michael