Thank you for this. As one of the PwMS, I appreciate the effort you put into communicating about this disease, treating it, and pushing the science forward on addressing it.
Totally agree although there is such disparity in treatment goals and what is normalised. I spoke to my Ms nurse this week re new activity that affected my hearing /neck muscles for 4 full days, the response was ‘well yes you’re going to have that no matter the treatment’.
Hi Prof Giovannoni. Thank you for this hugely informative presentation. I live in hope that there'll be a way we can slow down smouldering MS - there are clearly a lot of trials going on and new findings all the time. Interesting to learn that it's not necessarily the MS causing further disability but also the viruses or other that caused the MS in the first place. In the meantime I do a lot of the holistic / rehab work that you mention, in particular HIIT and exercise. I believe exercise has been huge in helping me stay physically and mentally fit. I don't follow a keto diet and I've not considered metformin - I'm wondering if I should consider adding one or both of these to my rehab regime.
I would recommend waiting for trial evidence before taking metformin to treat MS. Saying this I am aware of a large number of pwMS biohacking and purchasing metformin online.
Wonderful presentation. Easy to understand and containing very valuable information for patient and clinician alike. I am an MSer and recently finished Alemtuzumab a year ago here in the UK at the JR. I have seen a huge increase in recovery of symptoms from a fairly intense exercise regime, including strength, actively pushing the trigger areas (mainly lower limbs and feet), and HIIT along with zone 2 cardio. I went from being in constant discomfort to barely noticing my symptoms at all. The change has been really quite amazing. I'd love to share some more details on the specifics of the exercise that helped if it would be helpful for other patients. I've maintained a high level of exercise since diagnosis 12 years ago, however there were still unexpected gains by doing some non-traditional things (like say barefoot walking. I used to not be able to stand or walk even around my apartment without shoes, now I can walk outside on pebbles without cramping) etc.
Finally made time to watch while cooking dinner. I thought this was a very masterful talk! You started from the more-progressive edge of the current state of things (inverting the pyramid), covered shortcomings, and did a great roundup of things on the cusp, before getting in that pitch for exercise and concluding with the cycling team metaphor. Really well put together and informative without being droning. A+! You have rekindled my interest in diet and exercise approaches, just wish my post-covid fatigue would let up. Thank you for sharing this.
Thank you for this information. My question is regarding diet. I have bee following the Swank plan for 5 years. I recently (Feb22) started on Kesimpta due to new lesions therfore think it is time to re look at my diet. I have be researching the Modified Atkins Diet and am trying to decide is this the better option diet for MS due to the recent studies? Your thoughts would be appreciated. Thanks.
How do I get a consultation with you? I would like to have a solid hour of your time to discuss my MS and future treatment. Do you offer a cash option? I’m in the process of reading and watching everything you’ve provided on this Substack.
I only do NHS work. I simply don't have time for private practice. I am prepared to answer questions about individual cases on MS-selfie. I anonymise the case studies to make them generic so as to help other people manage their disease.
I would like to be a case study. I would appreciate that so much. Do you have a form? In a nutshell, I rejected DMT's and went straight holistic. I've optimized my health as much as possible. To the point where I think I'm resilient enough to handle some damage a drug therapy could cause but I don't want to go full immune system suppression via HSCT. I am definitely a slow burn MS situation. No relapses but I've lost my ability to run and I've lost my handwriting. Those are my only issues, I've fixed everything else with diet and lifestyle (bladder issues with pelvic floor PT and constipation issues with probiotics, etc). I have a happy family, I am a successful COO for a multi million $ corp., I have advanced degrees, familiar with bio and chem. I want to systematically decide the best course of action for treatment and the future.
Hi Prof Giovannoni, I love how you are pushing the limits forward for people with MS. I request that you please give THC/CBD a pragmatic mention relating to it's potential risk/reward for demyelinating diseases like MS and the need for data to be collected regarding it's potential for neuroprotection, remyelination and neuroplasticity. Reference:
Makes sense. Bit of a roller coaster at times with both good news and bad. But a helpful prompt to ask my healthcare provider about some of these things.
Thank you for this Selfie, the talk and the slides. Very helpful as usual and generous of you share the slides as well as the talk. It is enormously useful, probably not just for pwMS. Dave Brailsford's marginal gains philosophy could probably help with SDoH woes. By analysing domestic expenditure we could probably make multiple tiny savings in various parts of our lives adding up to significant savings.
This is important because pwMS are often unable to walk far or do the things well people can and need sufficient funds if they are to eat a healthy diet and stay warm and comfortable. Using this philosophy might enable pwMS to live a more healthy lifestyle with better diet and say, gym membership or an exercise bike which is as nearly as neuroprotective as treat to target.
Thank you yet again for increasing my understanding of MS as a nearly diagnosed pwMS your emails and presentations have been invaluable in understanding and building my knowledge. This is helping in ensuring I make the best choices to reduce risk factors were possible. Thank you.
Dear Prof. G, thank you very much for sharing your knowledge and experience, without any reservation. It is valuable for all MS neurologists, like myself, who are not always prioritized to hear your talks in conferences, but want to hear more and know something different, beyond standard algorithms, and be reminded of all addressable to human being itself, whether in health or disease. Your presentation is great and futuristic. I love to learn from you.
Hi Prof. Giovannoni. During the recent AANAM, Novartis showed new ofatumumab data were they found that Kesimpta is able to decrease mycroglial activity. Would this have an impact on inflammation, therefore BVL and smouldering MS?
I think all anti-inflammatory therapies will reduce microglial activation by preventing new lesion formation, but they are unlikely to render the CNS free of it from pre-existing lesions. It is all about cumulative damage that occurs over time, which setups and/or contributes to smouldering MS.
That’s great to know. I wanted to ask you if you could post an article targeting the possibility of switching from an anti-cd20 to a BTK inhibitor (if possible). I’m currently taking ofatumumab and everything has been positive so far. However, I’m aware that BTKs are superior and if I could switch to one of them would be a great option I can bring to the table when I visit my neurologist.
presentation and I think it did a great job driving the point home that treating ms is a multifaceted feat.
I am curious about something though… one of the first slides compares the need for a
walking stick with and without highly effective dmt’s. Doesn’t this data negate that dmt’s are not preventing long term disability? I’m confused on this. Thank you for all you do!!!
I am not saying anti-inflammatory therapies are not important, just that they are not enough. In my treatment pyramid they are labelled as being essential and you have to then add therapies on top of anti-inflammatory treatments to tackle the slow burn or smouldering component of MS. Yes, we have made great progress with high efficacy DMTs, but we need to go beyond these gains.
The point I an trying to make is that even if you are NEIDA you may still get worse from smouldering MS.
Okay thank you for clarifying. The data was conflicting in my brain and I was trying to make sense of it. Again thank you for all you do! I love getting all the information so I can make informed decisions.
Thank you for this. As one of the PwMS, I appreciate the effort you put into communicating about this disease, treating it, and pushing the science forward on addressing it.
Having MS is like having a full time job!
Isn't being alive a full-time job?
Well said Prof G. I have often wondered at the multi tasking ability of human brain even in seemingly impossible situations.
:)
Totally agree although there is such disparity in treatment goals and what is normalised. I spoke to my Ms nurse this week re new activity that affected my hearing /neck muscles for 4 full days, the response was ‘well yes you’re going to have that no matter the treatment’.
oh dear X
Hi Prof Giovannoni. Thank you for this hugely informative presentation. I live in hope that there'll be a way we can slow down smouldering MS - there are clearly a lot of trials going on and new findings all the time. Interesting to learn that it's not necessarily the MS causing further disability but also the viruses or other that caused the MS in the first place. In the meantime I do a lot of the holistic / rehab work that you mention, in particular HIIT and exercise. I believe exercise has been huge in helping me stay physically and mentally fit. I don't follow a keto diet and I've not considered metformin - I'm wondering if I should consider adding one or both of these to my rehab regime.
I would recommend waiting for trial evidence before taking metformin to treat MS. Saying this I am aware of a large number of pwMS biohacking and purchasing metformin online.
Hey Prof, I’m identifying any / all of the marginal gains that may help with my rehabilitation. I have a qq - keto or fasting?
Re: keto or fasting?
Horses for courses; not everyone can do keto, but everyone should be doing intermittent fasting.
Wonderful presentation. Easy to understand and containing very valuable information for patient and clinician alike. I am an MSer and recently finished Alemtuzumab a year ago here in the UK at the JR. I have seen a huge increase in recovery of symptoms from a fairly intense exercise regime, including strength, actively pushing the trigger areas (mainly lower limbs and feet), and HIIT along with zone 2 cardio. I went from being in constant discomfort to barely noticing my symptoms at all. The change has been really quite amazing. I'd love to share some more details on the specifics of the exercise that helped if it would be helpful for other patients. I've maintained a high level of exercise since diagnosis 12 years ago, however there were still unexpected gains by doing some non-traditional things (like say barefoot walking. I used to not be able to stand or walk even around my apartment without shoes, now I can walk outside on pebbles without cramping) etc.
Finally made time to watch while cooking dinner. I thought this was a very masterful talk! You started from the more-progressive edge of the current state of things (inverting the pyramid), covered shortcomings, and did a great roundup of things on the cusp, before getting in that pitch for exercise and concluding with the cycling team metaphor. Really well put together and informative without being droning. A+! You have rekindled my interest in diet and exercise approaches, just wish my post-covid fatigue would let up. Thank you for sharing this.
Thank you for this information. My question is regarding diet. I have bee following the Swank plan for 5 years. I recently (Feb22) started on Kesimpta due to new lesions therfore think it is time to re look at my diet. I have be researching the Modified Atkins Diet and am trying to decide is this the better option diet for MS due to the recent studies? Your thoughts would be appreciated. Thanks.
https://gavingiovannoni.substack.com/p/which-is-the-best-ms-diet?s=w
That's a fantastic presentation! Absolutely I agree NEIDA/holistical treatment should be the new norm. No brainer ;-) Thank you for sharing.
How do I get a consultation with you? I would like to have a solid hour of your time to discuss my MS and future treatment. Do you offer a cash option? I’m in the process of reading and watching everything you’ve provided on this Substack.
I only do NHS work. I simply don't have time for private practice. I am prepared to answer questions about individual cases on MS-selfie. I anonymise the case studies to make them generic so as to help other people manage their disease.
I would like to be a case study. I would appreciate that so much. Do you have a form? In a nutshell, I rejected DMT's and went straight holistic. I've optimized my health as much as possible. To the point where I think I'm resilient enough to handle some damage a drug therapy could cause but I don't want to go full immune system suppression via HSCT. I am definitely a slow burn MS situation. No relapses but I've lost my ability to run and I've lost my handwriting. Those are my only issues, I've fixed everything else with diet and lifestyle (bladder issues with pelvic floor PT and constipation issues with probiotics, etc). I have a happy family, I am a successful COO for a multi million $ corp., I have advanced degrees, familiar with bio and chem. I want to systematically decide the best course of action for treatment and the future.
No just drop me an email to MS-Selfie@giovannoni.net
Hi Prof Giovannoni, I love how you are pushing the limits forward for people with MS. I request that you please give THC/CBD a pragmatic mention relating to it's potential risk/reward for demyelinating diseases like MS and the need for data to be collected regarding it's potential for neuroprotection, remyelination and neuroplasticity. Reference:
https://bpspubs.onlinelibrary.wiley.com/doi/10.1111/bph.15608
Makes sense. Bit of a roller coaster at times with both good news and bad. But a helpful prompt to ask my healthcare provider about some of these things.
Thank you for this Selfie, the talk and the slides. Very helpful as usual and generous of you share the slides as well as the talk. It is enormously useful, probably not just for pwMS. Dave Brailsford's marginal gains philosophy could probably help with SDoH woes. By analysing domestic expenditure we could probably make multiple tiny savings in various parts of our lives adding up to significant savings.
This is important because pwMS are often unable to walk far or do the things well people can and need sufficient funds if they are to eat a healthy diet and stay warm and comfortable. Using this philosophy might enable pwMS to live a more healthy lifestyle with better diet and say, gym membership or an exercise bike which is as nearly as neuroprotective as treat to target.
Thank you yet again for increasing my understanding of MS as a nearly diagnosed pwMS your emails and presentations have been invaluable in understanding and building my knowledge. This is helping in ensuring I make the best choices to reduce risk factors were possible. Thank you.
Dear Prof. G, thank you very much for sharing your knowledge and experience, without any reservation. It is valuable for all MS neurologists, like myself, who are not always prioritized to hear your talks in conferences, but want to hear more and know something different, beyond standard algorithms, and be reminded of all addressable to human being itself, whether in health or disease. Your presentation is great and futuristic. I love to learn from you.
Hi Prof. Giovannoni. During the recent AANAM, Novartis showed new ofatumumab data were they found that Kesimpta is able to decrease mycroglial activity. Would this have an impact on inflammation, therefore BVL and smouldering MS?
I think all anti-inflammatory therapies will reduce microglial activation by preventing new lesion formation, but they are unlikely to render the CNS free of it from pre-existing lesions. It is all about cumulative damage that occurs over time, which setups and/or contributes to smouldering MS.
I understand. Do you think BTKs might be more effective at battling smouldering MS?
Yes - I think they may be because the cross into the brain and target both B-cells and microglial responses.
That’s great to know. I wanted to ask you if you could post an article targeting the possibility of switching from an anti-cd20 to a BTK inhibitor (if possible). I’m currently taking ofatumumab and everything has been positive so far. However, I’m aware that BTKs are superior and if I could switch to one of them would be a great option I can bring to the table when I visit my neurologist.
The BTKi are still in trial and won't be available to treat MS for another 4-5 years.
Thank you for this! I watched the whole
presentation and I think it did a great job driving the point home that treating ms is a multifaceted feat.
I am curious about something though… one of the first slides compares the need for a
walking stick with and without highly effective dmt’s. Doesn’t this data negate that dmt’s are not preventing long term disability? I’m confused on this. Thank you for all you do!!!
I am not saying anti-inflammatory therapies are not important, just that they are not enough. In my treatment pyramid they are labelled as being essential and you have to then add therapies on top of anti-inflammatory treatments to tackle the slow burn or smouldering component of MS. Yes, we have made great progress with high efficacy DMTs, but we need to go beyond these gains.
The point I an trying to make is that even if you are NEIDA you may still get worse from smouldering MS.
Okay thank you for clarifying. The data was conflicting in my brain and I was trying to make sense of it. Again thank you for all you do! I love getting all the information so I can make informed decisions.