I would consider age too. I’m sure when I was younger and not treated, ( unaware I had MS) some symptoms repaired. Mainly my arm function. As we age is it not harder to self repair with or without meds. I think it’s crucial to treat as soon as diagnosis is made. With the most effective medicine. Not the cheapest. As in the long run it’s not the cheapest for the person or society.
Amazing read! I need to deep dive properly into this later, as you raised many intriguing points. Quick question- do we know what drives or triggers the latent- lytic cycling of EBV? Wondering if the cycling correlates with worsening?
I suspect it is poor immunological control of the virus, i.e. what is driving it is an exhausted T-cell response. The virus likes to be active so it can spread to new people, i.e., infect them with the virus.
Oh interesting, so we just need a boost of super T cells to target ebv?
When you started out with that debate at your talk, what were the majority of the arguments against your theory? Especially how you said the clinical phenotypes we observe are merely an immunological phenotype-ie just immune system response.
I just think the ebv theory is very compelling so im trying to see why isn’t everyone on board with it and why aren’t all therapies / research targeted at that?
I was totally paralysed and very suddenly from waist down ..hoist/ wheelchair ..aged 17 ..in 1965/two episodes within three months ..made a complete recovery after a year . No meds other than ACTH gel…nothing else available … forgot about MS for 40 years …now have increasing disability diagnosed with SPMS …15 years ago in Newcastle ( saw you as a one off second opinion too ) use wheelchair outside and walker inside . Where do I fit in this thesis .my experience was certainly a Lazarus one ..but that has now been overtaken by new slow disability ..
The other problem is age-related neurodegeneration that occurs in older pwMS. Is it a recurrence of MS or simply the effects of ageing we are seeing? At present, we have no way of differentiating smouldering MS in older pwMS from ageing. This is a big problem.
That’s a really crucial point for me ( I’m 65). Just had MRI result -stable over last 3 scans - but progressing - or is it a result of ageing or more likely both?
Interesting that you state there is no way of differentiating symptoms of smouldering MS from those due to ageing especially in light of your recent question about treating pwms over the age of 70. Seems like a scenario to enable gaslighting.
We’ve always got to be careful with these wheelchair to running stories. I remember seeing similar claims c.20 years ago relating to ‘goat’s serum’. I always thought that lost CNS tissue was lost for good.
I’m assuming there’s a clinic in China selling anti-BCMA CAR-T Cell therapy for MS. Again, caution is needed in the same way as Mexican clinics offering HSCT.
Is there any evidence anti-BCMA CAR-T Cell therapy works in Multiple Myeloma (a disease involving plasma cells)?
If anti plasma cell therapies are the solution, it’s a shame that the SIZOMUS trial didn’t progress as planned. I finished the trial nearly 2.5 years ago (I suspect I was on the placebo). I’m guessing the trial results won’t be published for another 2+ years. A phase 3 trial would take another 5-7 years and I doubt any organisation will fund it as ixazomib will probably be out of patent. I wonder if any participants on the SIZOMUS trial (2/3rds got the real drug) showed any Lazarus type improvement. Perhaps SIZOMUS will confirm the benefit of anti-Plasma cell therapy and in the future the NHS will fund patients to head off to China for anti-BCMA CAR-T Cell therapy. The Chinese are leaving us for dead, not just medical research, but electric vehicles. The U.K. (and the west in general) are just too slow.
Yes, anti-BCMA CAR-T Cell therapy is licensed for treating myeloma with remarkable results. It cures some people with myeloma.
Chan CH, Yang X, Lyu M, Chen Z, Liu Y, Zhang G, Yu Y. Targeting BCMA in multiple myeloma: A comprehensive review of immunotherapeutic strategies and clinical outcomes. Mol Ther Oncol. 2025 Aug 30;33(4):201044. doi: 10.1016/j.omton.2025.201044. PMID: 41018974; PMCID: PMC12466123.
A private GP at the top of my road was involved with it. I never took it. It seemed to fizzle out - I’m guessing because it didn’t work. There was a big article in The Telegraph at the time.
I remember there was qualified NHS people involved. The goats blood cure was a scam. My friend exposed it in the Sunday Times. The guy flogging in later tryied to tout it as a cure for covid. But it was shocking that MHRA allowed it to be prescribed. It also had the backing of some very senior conservative MPs and Lords.
The brain contains stem cells and can recover to an extent. The old notion of no neuroregeneration after injury has been thoroughly discredited. It is logical. If there were no neuroplasticity then how would we learn stuff? New memories are new connections between neurones, or at least changes in the strength of connections between neurones.
The goats blood cure was a scam. My friend exposed it in the Sunday Times. The guy flogging in later tryied to tout it as a cure for covid. But it was shocking that MHRA allowed it to be prescribed. It also had the backing of some very senior conservative MPs and Lords.
I find it intellectually interesting, but not personally interesting. Going from a small trial in another country to broad availability in mine is a very long haul, and I know far too many people who give themselves emotional whiplash paying attention to every latest hopeful finding.
It's great and I'd love to see more. But it's all nifty at a distance.
I have been intrigued by CAR-T for a couple of years now, and this is another example of why. But I see it as a treatment- not a cure. The young man still has, you said, spasticity, so it has not cured him. Rather, it has tamped down his symptoms so that his youth can fight MS more effectively. I think you need more swallows, to use your analogy. I am still not convinced about EBV unless we get a better answer for why some with MS do not show any of the EBV antibodies. The usual “must have been a bad test” could be easily confirmed or refuted by running 2-3 more tests on that person, yet it has not been done- and that is the lowest hanging fruit out there.
I do agree with you that the Chinese will leapfrog western medicine; our current system is slow and inefficient, while they can be more ruthless in the quest for treatments. They are rapidly catching up on many fronts, biotech is only one (robotics, AI, facial recognition, etc). Pubmed has listed several trials by the Chinese which are interesting. Like most people, I do not understand why a trial costs a billion dollars. I can do math- and most of the staff involved have modest salaries. But lets say 100 staff at 100K apiece; only 10 million. Making the drug? When generics cost pennies, meaning the manufacturing is pretty well solved? Where does the money go? Lobbyists? Advertising? Bribes? In any case, the Chinese have fewer restrictions, and can try and discard several things while we only try for the blockbuster drug.
And a completely separate point…… an attorney (barrister) in my MS group told a story about a conversation with his doctor. The doctor said “well, you wouldn’t take a drug if you had a 10% chance of dying, even if you had a 90% chance of a cure, would you?” The attorney said I’m 72, and going downhill- of course I would. This shocked the doctor- but did not shock those of us on the older range. I am 68- I understand his POV. We try so hard to not hurt or damage in medicine, yet we ignore the ongoing damage. I believe a more frank discussion on what we, the patients, might agree to could open the doors to more options. Not your point, I know, but I believe we should discuss this.
I would encourage people to go to the paper linked to and look at supplemental table 3. I was not that impressed by the improvements in the EDSS score overall; patient one drop of EDSS of 7 to 4.5. The other four patients were more modest drops from 6 to 5. But, looking at the timed 25 foot walk test there were pretty dramatic improvements. This, as well as the nine hole peg test. Good news. From supplemental table one - Age of patient one at onset of the disease was 50, and age of enrollment was 53.
Very encouraging- such a change from when I was diagnosed 20 years ago. Then there was a reluctance in the UK to start me on DMT ( Avonex) as didn’t know how effective it would be for and therefore better to start it later on..
Very interesting and maybe hope for the future. Chinese medicine is interesting. Can this Lazarus effect be duplicated in other countries.?I also think age is an important factor
It’s always good to have hope. The Chinese created CoVID-19 (either intentionally, at the request of the US or accidentally). So their biotech is advanced. Hopefully, they’ll develop this treatment quickly in China, rather than waiting around for the phase 2, 3 and 4 trials in the West. I wonder if they have all the life wasting impediments, like ethics committees there too?
We’re stuck in the mud with an antiquated drug trials system. I remember several years ago that an MND trial was stopped for potential safety reasons. MND usually kills within 2 years! My friend has a Lotus electric SUV and my wife has an MG electric sports car. Both high quality cars with badges from defunct U.K. sports car manufacturers. The Chinese move forward quickly. My friend had Bells Palsy in the mid 1980s and I went with her to the neurologist appointment. My friend mentioned that she’d had glandular fever (EBV) a year before and the neuro mentioned a link between EBV and MS. 40 years later and the researchers are still tinkering with a therapy to target EBV in MSers! If you want something done, give it to the Chinese not British academics.
I’m cynical. Ever since I was diagnosed 25 years ago MS society having been touting a cure around the corner. There are a lot of people making money out of not finding a cure. Whilst MSers loose so much. Regards EBv being pointed at for so many autoimmune disease why do we not have vaccines. Cancer has targeted treatments, and treated “ belts and braces”. We’re not. Because we don’t come with the “ threat to life diagnosis”. Which nearly everyone fears. I’ve reached a point where I have no expectations of getting anything near a cure.
Totally agree. My aunt died of MS in her early 50s. J K Rowling’s mother died at 45, Theresa May’s mother in early 50s and Michelle Obama’s father in his mid 50s. The current guess is that it reduces life expectancy by 7-10 years. I think that’s pretty significant as c.10 years before death you’ll be slumped in a wheelchair or in a care home. The slowness of breakthroughs has been staggering compared with cancer. It’s a backwater keeping research teams busy. The expensive anti-relapse drugs don’t impact progression to any real extent, but pharma make billions.
My sister at 63. She was diagnosed later. So was put in PPMS. She had an aggressive treatment. Got Sepsis and died. Stuffed, with or without treatment really.
What might be driving the strong EDSS improvements? Did the patient still have reserves that he could tap into (my understanding was in progressive those were fairly limited)?
Yes, he was young (mid-30s) and had a recent disease onset, which are both predictors of reserve and good recovery from relapses and high-efficacy DMTs.
This seems extraordinarily promising. Being able to reverse disability in people with high EDSS gives hope.
I would consider age too. I’m sure when I was younger and not treated, ( unaware I had MS) some symptoms repaired. Mainly my arm function. As we age is it not harder to self repair with or without meds. I think it’s crucial to treat as soon as diagnosis is made. With the most effective medicine. Not the cheapest. As in the long run it’s not the cheapest for the person or society.
Amazing read! I need to deep dive properly into this later, as you raised many intriguing points. Quick question- do we know what drives or triggers the latent- lytic cycling of EBV? Wondering if the cycling correlates with worsening?
I suspect it is poor immunological control of the virus, i.e. what is driving it is an exhausted T-cell response. The virus likes to be active so it can spread to new people, i.e., infect them with the virus.
Oh interesting, so we just need a boost of super T cells to target ebv?
When you started out with that debate at your talk, what were the majority of the arguments against your theory? Especially how you said the clinical phenotypes we observe are merely an immunological phenotype-ie just immune system response.
I just think the ebv theory is very compelling so im trying to see why isn’t everyone on board with it and why aren’t all therapies / research targeted at that?
I was totally paralysed and very suddenly from waist down ..hoist/ wheelchair ..aged 17 ..in 1965/two episodes within three months ..made a complete recovery after a year . No meds other than ACTH gel…nothing else available … forgot about MS for 40 years …now have increasing disability diagnosed with SPMS …15 years ago in Newcastle ( saw you as a one off second opinion too ) use wheelchair outside and walker inside . Where do I fit in this thesis .my experience was certainly a Lazarus one ..but that has now been overtaken by new slow disability ..
The other problem is age-related neurodegeneration that occurs in older pwMS. Is it a recurrence of MS or simply the effects of ageing we are seeing? At present, we have no way of differentiating smouldering MS in older pwMS from ageing. This is a big problem.
It would in my opinion be a rather extreme form of normal ageing but perhaps worse because of the past damage as we discussed
That’s a really crucial point for me ( I’m 65). Just had MRI result -stable over last 3 scans - but progressing - or is it a result of ageing or more likely both?
Are you still on disease modifying drugs given these results?
I am for the moment -
Interesting that you state there is no way of differentiating symptoms of smouldering MS from those due to ageing especially in light of your recent question about treating pwms over the age of 70. Seems like a scenario to enable gaslighting.
Would neurofilaments help decide, or do they rise in normal aging too?
We’ve always got to be careful with these wheelchair to running stories. I remember seeing similar claims c.20 years ago relating to ‘goat’s serum’. I always thought that lost CNS tissue was lost for good.
I’m assuming there’s a clinic in China selling anti-BCMA CAR-T Cell therapy for MS. Again, caution is needed in the same way as Mexican clinics offering HSCT.
Is there any evidence anti-BCMA CAR-T Cell therapy works in Multiple Myeloma (a disease involving plasma cells)?
If anti plasma cell therapies are the solution, it’s a shame that the SIZOMUS trial didn’t progress as planned. I finished the trial nearly 2.5 years ago (I suspect I was on the placebo). I’m guessing the trial results won’t be published for another 2+ years. A phase 3 trial would take another 5-7 years and I doubt any organisation will fund it as ixazomib will probably be out of patent. I wonder if any participants on the SIZOMUS trial (2/3rds got the real drug) showed any Lazarus type improvement. Perhaps SIZOMUS will confirm the benefit of anti-Plasma cell therapy and in the future the NHS will fund patients to head off to China for anti-BCMA CAR-T Cell therapy. The Chinese are leaving us for dead, not just medical research, but electric vehicles. The U.K. (and the west in general) are just too slow.
Yes, anti-BCMA CAR-T Cell therapy is licensed for treating myeloma with remarkable results. It cures some people with myeloma.
Chan CH, Yang X, Lyu M, Chen Z, Liu Y, Zhang G, Yu Y. Targeting BCMA in multiple myeloma: A comprehensive review of immunotherapeutic strategies and clinical outcomes. Mol Ther Oncol. 2025 Aug 30;33(4):201044. doi: 10.1016/j.omton.2025.201044. PMID: 41018974; PMCID: PMC12466123.
The goat serum was called AIMSPRO.
A private GP at the top of my road was involved with it. I never took it. It seemed to fizzle out - I’m guessing because it didn’t work. There was a big article in The Telegraph at the time.
I remember there was qualified NHS people involved. The goats blood cure was a scam. My friend exposed it in the Sunday Times. The guy flogging in later tryied to tout it as a cure for covid. But it was shocking that MHRA allowed it to be prescribed. It also had the backing of some very senior conservative MPs and Lords.
"I always thought that lost CNS tissue was lost for good." This was my understansing as well. I'm not sure what the explanation is if there is one.
The brain contains stem cells and can recover to an extent. The old notion of no neuroregeneration after injury has been thoroughly discredited. It is logical. If there were no neuroplasticity then how would we learn stuff? New memories are new connections between neurones, or at least changes in the strength of connections between neurones.
New connections are new synapses. But actual complete, new nerve cells (neurons)--also called neurogenesis--only happens in very specific areas.
The goats blood cure was a scam. My friend exposed it in the Sunday Times. The guy flogging in later tryied to tout it as a cure for covid. But it was shocking that MHRA allowed it to be prescribed. It also had the backing of some very senior conservative MPs and Lords.
I find it intellectually interesting, but not personally interesting. Going from a small trial in another country to broad availability in mine is a very long haul, and I know far too many people who give themselves emotional whiplash paying attention to every latest hopeful finding.
It's great and I'd love to see more. But it's all nifty at a distance.
I have been intrigued by CAR-T for a couple of years now, and this is another example of why. But I see it as a treatment- not a cure. The young man still has, you said, spasticity, so it has not cured him. Rather, it has tamped down his symptoms so that his youth can fight MS more effectively. I think you need more swallows, to use your analogy. I am still not convinced about EBV unless we get a better answer for why some with MS do not show any of the EBV antibodies. The usual “must have been a bad test” could be easily confirmed or refuted by running 2-3 more tests on that person, yet it has not been done- and that is the lowest hanging fruit out there.
I do agree with you that the Chinese will leapfrog western medicine; our current system is slow and inefficient, while they can be more ruthless in the quest for treatments. They are rapidly catching up on many fronts, biotech is only one (robotics, AI, facial recognition, etc). Pubmed has listed several trials by the Chinese which are interesting. Like most people, I do not understand why a trial costs a billion dollars. I can do math- and most of the staff involved have modest salaries. But lets say 100 staff at 100K apiece; only 10 million. Making the drug? When generics cost pennies, meaning the manufacturing is pretty well solved? Where does the money go? Lobbyists? Advertising? Bribes? In any case, the Chinese have fewer restrictions, and can try and discard several things while we only try for the blockbuster drug.
And a completely separate point…… an attorney (barrister) in my MS group told a story about a conversation with his doctor. The doctor said “well, you wouldn’t take a drug if you had a 10% chance of dying, even if you had a 90% chance of a cure, would you?” The attorney said I’m 72, and going downhill- of course I would. This shocked the doctor- but did not shock those of us on the older range. I am 68- I understand his POV. We try so hard to not hurt or damage in medicine, yet we ignore the ongoing damage. I believe a more frank discussion on what we, the patients, might agree to could open the doors to more options. Not your point, I know, but I believe we should discuss this.
Even at 40 that trade off (assuming 90% cure, no lasting side effects) does sound like I would seriously consider it
Goodness, I was 47 at diagnosis and would have taken the same deal instantly (I know it's a hypothetical).
I would encourage people to go to the paper linked to and look at supplemental table 3. I was not that impressed by the improvements in the EDSS score overall; patient one drop of EDSS of 7 to 4.5. The other four patients were more modest drops from 6 to 5. But, looking at the timed 25 foot walk test there were pretty dramatic improvements. This, as well as the nine hole peg test. Good news. From supplemental table one - Age of patient one at onset of the disease was 50, and age of enrollment was 53.
Thank you for pointing this out.
As someone with PPMS and an EDSS of 6.5 this is so exciting. In very broad timescales how far are we away from delivering this treatment though?
Yep thats your patient right here
https://www.cell.com/cms/10.1016/j.cell.2025.09.020/asset/1b16c9c5-970f-49ff-8e44-38eb9618a70b/main.assets/gr1_lrg.jpg
Ms patient-1
Figure 1
Looking at the others patients
Caracteristics Supplemental information (4)
Patient 1 had the most benefit he was 50 years old PPms and had 3 years disease duration
All others had Spms and most longer disease duration ,except patient 5 with only 2 years ad still spms which is not so usual
Small study
Remains to be seen if PPms is the real indication of Anti bcma-cartcell theraphy
Very encouraging- such a change from when I was diagnosed 20 years ago. Then there was a reluctance in the UK to start me on DMT ( Avonex) as didn’t know how effective it would be for and therefore better to start it later on..
Very interesting and maybe hope for the future. Chinese medicine is interesting. Can this Lazarus effect be duplicated in other countries.?I also think age is an important factor
Watch this space for more information
Wow... and I haven't had cause to say that since I was diagnosed in 1987 and a very active 30 year old with a 2 year old..
Most taken though by your point that China are leading the field
It’s always good to have hope. The Chinese created CoVID-19 (either intentionally, at the request of the US or accidentally). So their biotech is advanced. Hopefully, they’ll develop this treatment quickly in China, rather than waiting around for the phase 2, 3 and 4 trials in the West. I wonder if they have all the life wasting impediments, like ethics committees there too?
We’re stuck in the mud with an antiquated drug trials system. I remember several years ago that an MND trial was stopped for potential safety reasons. MND usually kills within 2 years! My friend has a Lotus electric SUV and my wife has an MG electric sports car. Both high quality cars with badges from defunct U.K. sports car manufacturers. The Chinese move forward quickly. My friend had Bells Palsy in the mid 1980s and I went with her to the neurologist appointment. My friend mentioned that she’d had glandular fever (EBV) a year before and the neuro mentioned a link between EBV and MS. 40 years later and the researchers are still tinkering with a therapy to target EBV in MSers! If you want something done, give it to the Chinese not British academics.
I’m cynical. Ever since I was diagnosed 25 years ago MS society having been touting a cure around the corner. There are a lot of people making money out of not finding a cure. Whilst MSers loose so much. Regards EBv being pointed at for so many autoimmune disease why do we not have vaccines. Cancer has targeted treatments, and treated “ belts and braces”. We’re not. Because we don’t come with the “ threat to life diagnosis”. Which nearly everyone fears. I’ve reached a point where I have no expectations of getting anything near a cure.
Totally agree. My aunt died of MS in her early 50s. J K Rowling’s mother died at 45, Theresa May’s mother in early 50s and Michelle Obama’s father in his mid 50s. The current guess is that it reduces life expectancy by 7-10 years. I think that’s pretty significant as c.10 years before death you’ll be slumped in a wheelchair or in a care home. The slowness of breakthroughs has been staggering compared with cancer. It’s a backwater keeping research teams busy. The expensive anti-relapse drugs don’t impact progression to any real extent, but pharma make billions.
My sister at 63. She was diagnosed later. So was put in PPMS. She had an aggressive treatment. Got Sepsis and died. Stuffed, with or without treatment really.
Really something! Thank you for not giving up, Prof G.
What might be driving the strong EDSS improvements? Did the patient still have reserves that he could tap into (my understanding was in progressive those were fairly limited)?
Yes, he was young (mid-30s) and had a recent disease onset, which are both predictors of reserve and good recovery from relapses and high-efficacy DMTs.
He was 50 years old
The younger patient did not have those gains