I’m sure your going to get millions of questions about EBV with more compelling evidence. So sorry In advance
How will the treatment landscape change regarding MS. And what next?
Prevention will be brilliant for future generations if an EBV vaccine is successfully developed. However is it feasible that an anti viral can be developed for EBV within immune cells.
Look at the size of the error bars on slides 10 and 11 though… To me those are all the same numbers. Also unless I am misreading this, slide 6 shows the highest dose of evobrutinib only reducing new T2 lesions by about 70% compared to placebo. That’s an unacceptable level of efficacy when anti-CD20 pretty much stops new lesion formation completely.
I’d like to see some evidence of anti cd20 stopping lesions.. I’ve had new lesions on my last two mris since starting ocrevus march 2020.. My neuro says I’ve been unlucky and it’s surprising. I’m hoping they now I’ve been on it almost two years that things slow down.
It seems like your neurologist doesn’t have zero tolerance for new disease activity, which is the worst possible trait in an MS specialist. The trial period for ocrevus is one year, if you have gotten new lesions after that you should have been switched to a different drug. I would run far away from whoever you are currently seeing.
maybe ten potential new lesions were reduced to two
Also my comment about lesion formation was based on the clinical trial data. For example, off the top of my head, ublituximab reduces new lesions to 0.1 per year (on average, you are an individual of course), whereas according to these slides the evobrutinib patients in this trial got two lesions on average over the second twelve-week period of the trial.
MD, i have posed a few questions along similar lines of this one but haven’t yet got my head around it. A CD20 patient tests positive for the 2nd time to Covid. Likelihood is they still dont develop antibodies in the absence of B-cells. What is to stop this patient testing positive again a week later, then again a couple of weeks after that etc etc. In theory nothing? however i havent heard of such patients. Why is this?
I suspect a souped up immune system is important. As you say antibodies are reduced after anti CD20 in those that are lacking there is an important infection risk but a small a.mount.of antibdy may offer some protection but importantly you make a T cell response these will hang around for a few months before their numbers drop and they will deal with new infections
Info – my wife got a covid 4.5 months after hsct , everything went relatively smoothly, no issues at old, looked like a mild cold.. i posted a question 2 weeks aho, i got response from MD, so i felt obliged to close the loop:). Tnx MD
Regarding balance issues in MS, is the feeling that the ankles or feet are being pushed when lifting the feet off the ground a common symptom? I often read about people experiencing instability when touching the ground. Or does it vary from person to person?
Sensitivity to temperature – I read many struggles with heat however I’m noticing some of my symptoms improve during summers, is this possible? Had no muscle tightness issues since beginning of the summer, random sensory hiccups much less often, and haven’t had the imbalanced feeling (almost tripping over feeling) for a while now..
Hi, this may have been covered already…
‘ Over-50s and younger adults with underlying health conditions are being urged to participate in a study of life-saving treatments for Covid-19.’ BBC news 25/01/22.
Those to be used in the Panoramic trial are:
molnupiravir, made by Merck, Sharp and Dohme (MSD)
paxlovid, made by Pfizer and taken alongside another drug, ritonavir
As these are both anti-virals, could pwMS taking these as part of the Covid trial, see some benefit with their MS (regarding the EBV theory of MS/ viral theory of MS)?
Re. Covid trial and ritonavir and People with the health conditions are also encouraged to sign up: including those with neurological diseases. (BBC)
Yes it seems, ritonavir suppresses EBV:
‘infants receiving lopinavir/ritonavir suppressed EBV more rapidly.’ https://pubmed.ncbi.nlm.nih.gov/24550373/
It’s more complicated than that as there definitely is an immune component but classical autoimmune disease, probably not. EBV infection definitely seems to be necessary to start the whole process off though but obviously there are other factors to be considered such as genetic background etc etc..
How do MS researchers track mortality trends in pwms globally? I was a bit surprised to find A simple internet string search [“multiple sclerosis” obituary ] pulls up what appears to be a lot of middle-aged pwms, who have died of “MS complications” in past two years. But if one performs a more complex string search for specific previously published (in mainstream reputable sources) Human interest stories on pwms, who died after receiving aggressive treatment, the search engine algorithm doesn’t work. Maybe I’m off base. But It seems that search engine algorithms which have been tweaked during the pandemic to (appropriately suppress false health claims) have impacted the ability to find articles which contain factually correct, but negative, health outcomes for pwms on DMT. Celebrities help educate the public about MS, and I am grateful for such attention, but a celebrity living with MS looks very different than say, me, living with MS. News articles about the teacher, the chef, the golfer, the parent, who describe their less than glamorous but persistent attempts to live with MS, and their health outcomes needs to be kept in the public view.
It looks like there are multiple EBV-related treatments on the way. I’m very eager to see what they can do for MS patients – hopefully not too far into the future.
Hi there. What are your thoughts on taking l-lysine? I read it may help with reducing inflammation and also relapses. Do you think it’s a worth while supplement to take? Thanks.
Are you talking about my gut…hopefully its getting smaller;-)
Ta I’lll have a look, but you are correct I am fighting a loosing battle…I’m powerless to resist, I will start collecting Pooh right now:-)
Everything below the chest spasms through the day and night, it’s not overly painful so I don’t take anything for it. But, I am booked in for a general anaesthetic for a gynae procedure that doesn’t usually require it but is necessary because of the spasms. For future reference is there anything I can take for spasms that doesn’t cause weight gain or brain fog?
Just take an anti-spasticity drug for a few months before the surgery then go off it afterwards. General anesthesia is extremely bad for people with MS. You should avoid it at all costs.
The TCR repertoire in the brain-responsive cells had restricted diversity, as expected for an antigen-driven response. The brain-specific TCR in controls overlapped most with EBV, but the results in MS were more diverse, suggesting that the immune response to multiple viruses might stimulate T cells also able to recognize brain antigens
Are you trying to draw me into trouble…..Is this more evidence for the non importance of T cells?
At least they are saying they dont think it is myelin basic protein as a target. They show that they can get a response to a mix of brain antigens but only in 3 out of 5 people with MS, compared to 5 out of 5 responding to EBV and 4 out of 5 responding to flu. So it is not that completing that you have the answer. Sure people will respond to brain antigens but is is secondary to damage or the real problem.
They talk about recent studies hunting for antigens (targets) but forgot to mention the work done twenty years ago showing that T cells respond to the dominantly expressed antigen in MS brain. Surely this should be excluded first
I’m sure your going to get millions of questions about EBV with more compelling evidence. So sorry In advance
How will the treatment landscape change regarding MS. And what next?
Prevention will be brilliant for future generations if an EBV vaccine is successfully developed. However is it feasible that an anti viral can be developed for EBV within immune cells.
If there is a will there is a way….
How come they did trials on the neck vein MS thing but not EBV? It seems there is bigger traction for EBV from patients.
With ACTRIMS approaching in February, what should we be on the look out for at the conference?
I don’t know we will have to wait and see
PS I suspect a million presentations on covid
Old news but new for me. Evobrutiniv reduces slowly expanding lesions.
https://medical.emdserono.com/content/dam/web/health-care/biopharma/web/USMI/congress-presentations/Arnold-D-ECTRIMS-21-SEL-oral-presentation-Final-coversheet.pdf
Look at the size of the error bars on slides 10 and 11 though… To me those are all the same numbers. Also unless I am misreading this, slide 6 shows the highest dose of evobrutinib only reducing new T2 lesions by about 70% compared to placebo. That’s an unacceptable level of efficacy when anti-CD20 pretty much stops new lesion formation completely.
I’d like to see some evidence of anti cd20 stopping lesions.. I’ve had new lesions on my last two mris since starting ocrevus march 2020.. My neuro says I’ve been unlucky and it’s surprising. I’m hoping they now I’ve been on it almost two years that things slow down.
It seems like your neurologist doesn’t have zero tolerance for new disease activity, which is the worst possible trait in an MS specialist. The trial period for ocrevus is one year, if you have gotten new lesions after that you should have been switched to a different drug. I would run far away from whoever you are currently seeing.
maybe ten potential new lesions were reduced to two
Also my comment about lesion formation was based on the clinical trial data. For example, off the top of my head, ublituximab reduces new lesions to 0.1 per year (on average, you are an individual of course), whereas according to these slides the evobrutinib patients in this trial got two lesions on average over the second twelve-week period of the trial.
Thanks progressive ms will be a battle ground for BTKi
MD, i have posed a few questions along similar lines of this one but haven’t yet got my head around it. A CD20 patient tests positive for the 2nd time to Covid. Likelihood is they still dont develop antibodies in the absence of B-cells. What is to stop this patient testing positive again a week later, then again a couple of weeks after that etc etc. In theory nothing? however i havent heard of such patients. Why is this?
I suspect a souped up immune system is important. As you say antibodies are reduced after anti CD20 in those that are lacking there is an important infection risk but a small a.mount.of antibdy may offer some protection but importantly you make a T cell response these will hang around for a few months before their numbers drop and they will deal with new infections
I’d also be interested to hear this.. I wonder if its because they’re being sore careful (I know I am)
https://www.nature.com/articles/s41586-022-04432-7
Could be a missing link into the trigger for MS
Could be but we have been here many times
Info – my wife got a covid 4.5 months after hsct , everything went relatively smoothly, no issues at old, looked like a mild cold.. i posted a question 2 weeks aho, i got response from MD, so i felt obliged to close the loop:). Tnx MD
Happy she did ok,
Hi MD / Prof K,
Regarding balance issues in MS, is the feeling that the ankles or feet are being pushed when lifting the feet off the ground a common symptom? I often read about people experiencing instability when touching the ground. Or does it vary from person to person?
Needs a neuro to answer this
Sensitivity to temperature – I read many struggles with heat however I’m noticing some of my symptoms improve during summers, is this possible? Had no muscle tightness issues since beginning of the summer, random sensory hiccups much less often, and haven’t had the imbalanced feeling (almost tripping over feeling) for a while now..
Hi, this may have been covered already…
‘ Over-50s and younger adults with underlying health conditions are being urged to participate in a study of life-saving treatments for Covid-19.’ BBC news 25/01/22.
Those to be used in the Panoramic trial are:
molnupiravir, made by Merck, Sharp and Dohme (MSD)
paxlovid, made by Pfizer and taken alongside another drug, ritonavir
As these are both anti-virals, could pwMS taking these as part of the Covid trial, see some benefit with their MS (regarding the EBV theory of MS/ viral theory of MS)?
Re. Covid trial and ritonavir and People with the health conditions are also encouraged to sign up: including those with neurological diseases. (BBC)
Yes it seems, ritonavir suppresses EBV:
‘infants receiving lopinavir/ritonavir suppressed EBV more rapidly.’ https://pubmed.ncbi.nlm.nih.gov/24550373/
If EBV causes MS.
Can it now be ruled out the MS isn’t an auto immune disease.
It’s more complicated than that as there definitely is an immune component but classical autoimmune disease, probably not. EBV infection definitely seems to be necessary to start the whole process off though but obviously there are other factors to be considered such as genetic background etc etc..
No
How do MS researchers track mortality trends in pwms globally? I was a bit surprised to find A simple internet string search [“multiple sclerosis” obituary ] pulls up what appears to be a lot of middle-aged pwms, who have died of “MS complications” in past two years. But if one performs a more complex string search for specific previously published (in mainstream reputable sources) Human interest stories on pwms, who died after receiving aggressive treatment, the search engine algorithm doesn’t work. Maybe I’m off base. But It seems that search engine algorithms which have been tweaked during the pandemic to (appropriately suppress false health claims) have impacted the ability to find articles which contain factually correct, but negative, health outcomes for pwms on DMT. Celebrities help educate the public about MS, and I am grateful for such attention, but a celebrity living with MS looks very different than say, me, living with MS. News articles about the teacher, the chef, the golfer, the parent, who describe their less than glamorous but persistent attempts to live with MS, and their health outcomes needs to be kept in the public view.
Car t cells against ebv
Tevogen to Develop T-cell Therapy That Might Prevent EBV Infection
https://multiplesclerosisnewstoday.com/news-posts/2022/01/25/tevogan-plans-t-cell-therapy-prevent-ebv-infection-myelin-attacks/?utm_source=MS&utm_campaign=93eac21eb1-RSS_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_b5fb7a3dae-93eac21eb1-71699829
Great to hear.
It looks like there are multiple EBV-related treatments on the way. I’m very eager to see what they can do for MS patients – hopefully not too far into the future.
This isn’t CAR T therapy
yep
This is not car T it is simply ATARA mark II
Yep sorry
Atara me too
🙂
Hi there. What are your thoughts on taking l-lysine? I read it may help with reducing inflammation and also relapses. Do you think it’s a worth while supplement to take? Thanks.
There is no evidence…so as with all supplements buyer beware
Evidence for some supplements just published – https://doi.org/10.1136/bmj-2021-066452 🙂
Interesting p=0.19 is no difference and p=O.05 is no difference
I just read that there was a study that showed MS could be triggered by having your tounsils out. Is there any truth to that?
One found no evidence another found a very small increased risk but I really wouldn’t lose any sleep over this.
Neuroprotection
Active ingredient in cannabis protects aging brain cells
https://medicalxpress.com/news/2022-01-ingredient-cannabis-aging-brain-cells.html
Thanks but I doubt it will go anywhere, we tried again recently and there was no interest
🙁
Unique weapon in immune system arsenal could unlock multiple sclerosis treatment
https://medicalxpress.com/news/2022-01-unique-weapon-immune-arsenal-multiple.html
Maybe of interest: these researchers found that reactivation of Epstein-Barr virus may be risk factor for long COVID https://www.nytimes.com/2022/01/25/health/long-covid-risk-factors.html
Sorry MD you simply can’t escape the gut – getting bigger by the day!
https://today.uconn.edu/2022/01/meat-multiple-sclerosis-and-the-microbiome/
Are you talking about my gut…hopefully its getting smaller;-)
Ta I’lll have a look, but you are correct I am fighting a loosing battle…I’m powerless to resist, I will start collecting Pooh right now:-)
Indeed
🙂
More🥩🥩🥩 more ms?
https://medicalxpress.com/news/2022-01-meat-multiple-sclerosis-microbiome.html
Its b cells and memory b cells and germical center and plasma cells and antibodies and and 🙂
https://www.youtube.com/watch?v=6P28a3TmVyg
https://pubmed.ncbi.nlm.nih.gov/26912368/
https://pubmed.ncbi.nlm.nih.gov/31866068/
Dmt changes t cell over t time
Study: DNA Methylation in T-cells Affected by MS and Its Treatments
https://multiplesclerosisnewstoday.com/news-posts/2022/02/01/ms-treatments-affect-dna-methylation-t-cells-study/?utm_source=MS&utm_campaign=8c71ca8df4-RSS_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_b5fb7a3dae-8c71ca8df4-71699829&cn-reloaded=1
What about b cell did they change too
If you think T cells are the problem you dont care about B cells…so you dont look
🙁
Everything below the chest spasms through the day and night, it’s not overly painful so I don’t take anything for it. But, I am booked in for a general anaesthetic for a gynae procedure that doesn’t usually require it but is necessary because of the spasms. For future reference is there anything I can take for spasms that doesn’t cause weight gain or brain fog?
I was supposed to post this on a different site sorry, I got in a muddle.
Just take an anti-spasticity drug for a few months before the surgery then go off it afterwards. General anesthesia is extremely bad for people with MS. You should avoid it at all costs.
Vitamin d and incidence ofauto immune diseases
we have to be honest about how good the effects are
Yep 30% the most
Still better than crab drugs
Oligo. genes
New genetic clues for multiple sclerosis risk
https://medicalxpress.com/news/2022-01-genetic-clues-multiple-sclerosis.html
interesting thanks
https://www.cell.com/neuron/fulltext/S0896-6273(21)01089-8?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0896627321010898%3Fshowall%3Dtrue
Its oppen acess
T time
Brain Antigens Stimulate Proliferation of T Lymphocytes With a Pathogenic Phenotype in Multiple Sclerosis Patients
https://multiple-sclerosis-research.org/2022/01/qa-jan-3/#comments
The TCR repertoire in the brain-responsive cells had restricted diversity, as expected for an antigen-driven response. The brain-specific TCR in controls overlapped most with EBV, but the results in MS were more diverse, suggesting that the immune response to multiple viruses might stimulate T cells also able to recognize brain antigens
Now atack : ) lollllll
Maybe you put the wrong link in.
Now attack T time….it is a losing battle…
Oh no…..looolll
https://www.frontiersin.org/articles/10.3389/fimmu.2022.835763/full
For you to atack the t cell guys
lolll
And on and on it goes…..
We’ll be seeing the same thing in 10, 20, 30 years?……………..
Meh.
Are you trying to draw me into trouble…..Is this more evidence for the non importance of T cells?
At least they are saying they dont think it is myelin basic protein as a target. They show that they can get a response to a mix of brain antigens but only in 3 out of 5 people with MS, compared to 5 out of 5 responding to EBV and 4 out of 5 responding to flu. So it is not that completing that you have the answer. Sure people will respond to brain antigens but is is secondary to damage or the real problem.
They talk about recent studies hunting for antigens (targets) but forgot to mention the work done twenty years ago showing that T cells respond to the dominantly expressed antigen in MS brain. Surely this should be excluded first