I love that you share the up-to-date research. The audio explanation of the science coupled with the text allows me to follow along and understand the implications of the research. I was diagnosed later in life (48) and now at 60 am progressing (my walking ability is impacted). I am no longer on any DMTs (Rebif prior). I rely on adjunct therapies (diet, exercise, neuro supplements etc). The science of gene therapies, and re-myelination therapies are relevant to my future. For now, I am all in on the "marginal gains philosophy" and find the science decoded or ordered for emphasis invaluable.
Good information even when it doesn't apply to me. I was interested to hear that one gene (znfz38) that is involved in MS is involved in intelligence/cognition - reminds me of what Dr. Roy Swank used to say, that people with MS tend to be type A personalities (not intelligence but drive, but still).
I find the updates super easy to understand on the whole and I have supported the MS Selfie for 2 years. I am not working at the moment, so I am unable to renew my subscription.
My EDSS is 2.0 (according to the MS Register), and my Neurologist has agreed that I have benign MS. I would be interested to hear more on this as I have now been cast aside from the NHS for 2 years. No more appointments or MRIs for me due to the long NHS waiting lists.
I think anyone who has MS needs to have a lot of grit, determination and resilience.
Honestly? I, personally, skim the really sciencey stuff you post. I try to be pragmatic, and I'm just trying to survive. So something that might lead to a treatment in 15 years, that I probably won't be able to access anyway, doesn't effect me.
I closely read anything about current treatments, services, and ways I should modify my own behaviour.
The 'Brain Health' section was interesting for me. I do most of it. But I struggle with exercise because I can barely move. Keto was awful; my cognitive functioning plummeted, so I stopped. I asked my GP if I can get Metformin: he asked why. I explained it's for MS, biohacking, neurologists taking it for anti-ageing; he laughed long and hard... So there's no way I can legally get it, unless there are private doctors who will give it, and that would be expensive.
Social Capital... I'm guessing I have a horrifically low amount. Certainly, the NHS considered me to have zero worth, and if one has no socioeconomic value it's impossible to amass social capital.
Thank you Prof G for this very interesting newsletter.
An unrelated question on which your opinion would be much appreciated: I have had six Ocrevus infusions so far (I was diagnosed with MS at the end of 2019 and started Ocrevus in March 2020, with a four month delay to my third infusion in 2021 in order better to respond to the Covid vaccine). My MS has been stable since I started receiving Ocrevus (putting aside smouldering MS, of course). As I will be traveling, after consulting with my neurologist we agreed that I would postpone my seventh infusion by one month. My neurologist believes that given how long Ocrevus stays in the body, delaying the infusion by one month is fine and implies no MS-related risks. Do you agree?
Really interesting - thank you Prof G. Is it possible get ones genes analysed to look at possible trajectory of disability or does it not work like that..
Thank you for the newsletters. I have difficulty understanding written information. Your voice recordings are enjoyable and help greatly with my comprehension. I enjoy all of your updates as I learn something new or I am reminded of important information I had forgotten. Thanks again and have a wonderful weekend. Canada 🇨🇦 day long weekend for us!
I have a background in medicine but in psychiatry not neurology, genetics or immunology and I am retired so a lot of the areas covered are not familiar to me, discovered well after my time. I certainly get the gist of the newsletters and can drill down into areas that are of more interest. For example my neurologist said enigmatically "you must be a good remyelinator" as I have low EDSS after nearly 35 yrs. It seemed like a good thing to be but now I understand what might be behind it. I think pwMS will gain something at various levels form the News Letters. I have found that best understanding is through reading AND listening at the same time. The audible content seems to give subtle helpful increase in information from tone and emphasis etc but the text gives access to unfamiliar concepts and terms in a way that can be followed up and of course diagrams and charts. Please continue.
Having also spotted reference to this research just yesterday, I’m very pleased to receive your email this morning, explaining the conclusions in their wider context. It is particularly helpful to have an understanding of the extent of the generic influence as compared with relevant influencers on disease progression such as DMTs and lifestyle factors.
This article provides not only scientific information, but also a degree of reassurance that we are not simply a victim of our genes, but can off-set and benefit ourselves through your recommended lifestyle measures.
Having these kind of posts from you going forward will be helpful - though please do remember, as with all your articles, to put an alert at the outset if the content may cause considerable distress or anxiety - thank you.
Talking of ways of working my brain - I really must listen to some of your articles ProfG and not solely read them!😏
With no scientific background, I did understand quite a lot of this post, mainly because I’m a follower of Prof G and have learned by reading his blogs. Even although it might be viewed as depressing, I believe this is a good place to educate and discuss.
I really enjoy all of your newsletters, I studied biomedical science at University so the scientific content level is kind of comfortable for me, and I appreciate that level of information. I work in early phase clinical Research, so I agree that a certain level of context for new findings is important, because as you say, there is a long time before all this could result in having medication available on the NHS.
I love that you share the up-to-date research. The audio explanation of the science coupled with the text allows me to follow along and understand the implications of the research. I was diagnosed later in life (48) and now at 60 am progressing (my walking ability is impacted). I am no longer on any DMTs (Rebif prior). I rely on adjunct therapies (diet, exercise, neuro supplements etc). The science of gene therapies, and re-myelination therapies are relevant to my future. For now, I am all in on the "marginal gains philosophy" and find the science decoded or ordered for emphasis invaluable.
Good information even when it doesn't apply to me. I was interested to hear that one gene (znfz38) that is involved in MS is involved in intelligence/cognition - reminds me of what Dr. Roy Swank used to say, that people with MS tend to be type A personalities (not intelligence but drive, but still).
I find the updates super easy to understand on the whole and I have supported the MS Selfie for 2 years. I am not working at the moment, so I am unable to renew my subscription.
My EDSS is 2.0 (according to the MS Register), and my Neurologist has agreed that I have benign MS. I would be interested to hear more on this as I have now been cast aside from the NHS for 2 years. No more appointments or MRIs for me due to the long NHS waiting lists.
I think anyone who has MS needs to have a lot of grit, determination and resilience.
Thank you. I agree about grit, determination and resilience.
Honestly? I, personally, skim the really sciencey stuff you post. I try to be pragmatic, and I'm just trying to survive. So something that might lead to a treatment in 15 years, that I probably won't be able to access anyway, doesn't effect me.
I closely read anything about current treatments, services, and ways I should modify my own behaviour.
The 'Brain Health' section was interesting for me. I do most of it. But I struggle with exercise because I can barely move. Keto was awful; my cognitive functioning plummeted, so I stopped. I asked my GP if I can get Metformin: he asked why. I explained it's for MS, biohacking, neurologists taking it for anti-ageing; he laughed long and hard... So there's no way I can legally get it, unless there are private doctors who will give it, and that would be expensive.
Social Capital... I'm guessing I have a horrifically low amount. Certainly, the NHS considered me to have zero worth, and if one has no socioeconomic value it's impossible to amass social capital.
Thanks for explaining all of this and putting it in perspective!
Thank you Prof G for this very interesting newsletter.
An unrelated question on which your opinion would be much appreciated: I have had six Ocrevus infusions so far (I was diagnosed with MS at the end of 2019 and started Ocrevus in March 2020, with a four month delay to my third infusion in 2021 in order better to respond to the Covid vaccine). My MS has been stable since I started receiving Ocrevus (putting aside smouldering MS, of course). As I will be traveling, after consulting with my neurologist we agreed that I would postpone my seventh infusion by one month. My neurologist believes that given how long Ocrevus stays in the body, delaying the infusion by one month is fine and implies no MS-related risks. Do you agree?
https://gavingiovannoni.substack.com/p/case-study-are-we-ready-for-adaptive#details
Thank you Prof G for a really interesting newsletter.
Really interesting - thank you Prof G. Is it possible get ones genes analysed to look at possible trajectory of disability or does it not work like that..
Thank you for the newsletters. I have difficulty understanding written information. Your voice recordings are enjoyable and help greatly with my comprehension. I enjoy all of your updates as I learn something new or I am reminded of important information I had forgotten. Thanks again and have a wonderful weekend. Canada 🇨🇦 day long weekend for us!
I have a background in medicine but in psychiatry not neurology, genetics or immunology and I am retired so a lot of the areas covered are not familiar to me, discovered well after my time. I certainly get the gist of the newsletters and can drill down into areas that are of more interest. For example my neurologist said enigmatically "you must be a good remyelinator" as I have low EDSS after nearly 35 yrs. It seemed like a good thing to be but now I understand what might be behind it. I think pwMS will gain something at various levels form the News Letters. I have found that best understanding is through reading AND listening at the same time. The audible content seems to give subtle helpful increase in information from tone and emphasis etc but the text gives access to unfamiliar concepts and terms in a way that can be followed up and of course diagrams and charts. Please continue.
Having also spotted reference to this research just yesterday, I’m very pleased to receive your email this morning, explaining the conclusions in their wider context. It is particularly helpful to have an understanding of the extent of the generic influence as compared with relevant influencers on disease progression such as DMTs and lifestyle factors.
This article provides not only scientific information, but also a degree of reassurance that we are not simply a victim of our genes, but can off-set and benefit ourselves through your recommended lifestyle measures.
Having these kind of posts from you going forward will be helpful - though please do remember, as with all your articles, to put an alert at the outset if the content may cause considerable distress or anxiety - thank you.
Talking of ways of working my brain - I really must listen to some of your articles ProfG and not solely read them!😏
With no scientific background, I did understand quite a lot of this post, mainly because I’m a follower of Prof G and have learned by reading his blogs. Even although it might be viewed as depressing, I believe this is a good place to educate and discuss.
I really enjoy all of your newsletters, I studied biomedical science at University so the scientific content level is kind of comfortable for me, and I appreciate that level of information. I work in early phase clinical Research, so I agree that a certain level of context for new findings is important, because as you say, there is a long time before all this could result in having medication available on the NHS.