'Natalizumab may reduce smouldering MS, but it does not stop smouldering MS, which, in my opinion, is the real MS, and this may take many decades to manifest itself.'
Is the first line relapsing ms?"
No. PwMS treated with natalizumab have reduced brain volume loss and reduced microglial activation on TSPO-PET imaging, which are biomarkers of smouldering MS. It is clear smouldering MS is reduced by natalizumab, but not stopped.
Thanks for your comments on AI blind spots on the question of 'Inside out' and bacterial toxins. What you get clearly depends on who you ask and how you put your question! I was astonished by the insightful and comprehensive response I got using 'Google studio' , asking the question, What is the significance of Staph aureus sphingomyelinase in relation to the high rate of Multiple sclerosis on the Orkney islands? If you anticipate asking more questions on this topic, you may also find it useful! Very best wishes. I really don't know how you manage to keep up with all of this !!
The answer is “YES,” your expertise and insights are highly sought despite the prevalence of AI-generated trash. Thank you for this piece today, and I am intrigued to learn more.
Thanks for all your thoughts and analysis about AI generated information. Also, to reassure you that your comments, views and information are very much appreciated and needed.
I see the positive aspects of AI, in that it is able to process and assess data in a much quicker timeframe than us humans but I see the fallibility of relying on AI information without the ability to realistically critic what it produces. I have a concern that if we go too far down the AI route that most of us will end up believing all it produces, losing the ability to critically assess its content. I wouldn't be able to analyse that sort of advanced content and worry that others, who may also be less informed like me and less likely to bother to do such an assessment, will come to rely on it de facto. What happens if the next generation of student medics use AI without ensuring that they are able to critically review such output? Will we start to depend on AI and lose the personal knowledge and learning that can develop from our ability to reason, based on sources of primary information?
Your MS Selfie content is still very much valued. The content, as I see it, appears to fall into two categories. One category seems to cover practical, experienced knowledge on how best to self manage our own issues eg, bladder, cognition, DMT suitability, testing, taking control and challenging our neurologists if required, our everyday management of our personal MS and the other - the scientific and medical background of the disease and the latest trials, developments, treatments and theories. I'm interested in both but sometimes find that the science/medical background can become overwhelming in detail as , even though I have been trained as a scientist and have worked in pharmaceutical production, I'm not a neurologist/immunologist and unless you become immersed in this area then the detail can be difficult to follow. Would some sort of division that splits your content into either area be a helpful step? Electronic machine/systems are in no way as valuable as the human contact/information/opinion that is currently your output on MS Selfie
The Q&A newsletters are for paying subscribers and people who can't afford a subscription. The Q&A feature is how I support the site and the associated MS-Selfie activities. In short, I use the income to hire people to help me.
On the Substack website, you will see at the top of each newsletter a classification system. Either is a general newsletter labelled MS-Selfie (self-management), Q&A and MS-Selfie Research. This is how you can sort out at least three different types of newsletters. Sometimes I forget to label them correctly, so it is not always correct, but a good guide.
Hi Dr. G. I am a founding member of MS- Selfie and personally have PPMS. I havetaken Ocrevus, HSCT, Stem Cells, Multiple Med Parasite cleanse, AIP diet, Hormone therapy, supplements, and work out every day. Out of it all HSCT was definatley the most effective. I truly believe the EBV could be the cause and my numbers are always very high. I was wondering what HIV antivirals have shown the most promise or success so far in decreasing MS disease? I know Tenofovir is one but want to know if there are any others that showed promise? I have sent you this question a couple of times but not sure if I am sending it through the correct portal. My email is clarket79@gmail.com if that would be easier. I am a physician myself and would appreciate your input. Thanks!
The Toxins part made me think of someone with MS that I know that just did a Fecal microbiota transplant (FMT). Curious to know whether you have any thoughts on FMT for MS?
Unless part of a clinical trial or to treat a disease for which FMT is licensed (pseudomembranous colitis due to C. difficile), no one with MS should be having FMT.
The MS-Selfie continues to be very relevant for me. And most others have covered my concerns on relying on AI without critical eyes. One thought though is, those people with MS who have done well on antiretroviral treatments is thus due to their multipronged actions ie hitting a number of viruses at the same time?
I didn't explain _why_ I wasn't going to read the LLM output, but I suppose I should have. The issue is that I don't have the expertise to identify problems -- particularly not once you edited out the straight-up hallucinations. And it seems very likely that at least some of the incorrect AI output would stick in my head, even if I tried to read it skeptically, and someday in the future I'd pull up an idea that was wrong but I didn't remember the provenance.
I'm very very good in a different technical field and a big part of that is that I curate my own inputs.
I believe pretty strongly in human expertise and definitely feel there is still a need for you, as well as my own very good neurologist. When I have questions as a patient, I need to be told the correct answer, not the next plausible token.
I find myself wondering how Gemini would deal with your critique or come to that a variety of critiques from different perspectives. Not at all sure how it could be arranged but could the ongoing iterations of AI analyses and multiple feedbacks/ critiques provide some really useful AI assisted answers? ( I and sure that at least for the time being your analyses have an important role and place).
In 2004 shortly after I was diagnosed due to a blind spot in left eye, I saw a nutritionist for Candida and had a stool analysis. I need to review the results, but there were unexpected toxins that surprised the nutritionist. Not strep, or C-diff, the one I remember was a black mold
I have the antibodies. But medical professionals aren't doing anything about that, because the long term effect of the virus isn't fully understood. There aren't any treatments currently that address EBV.
Hi Prof, I actually learned a lot from the AI output, not being familiar with the basic controversies in the area. However it was verbose. In additional to scotomas, it is hard for the layman to detect fluent bullshit - I wanted to read your post to check that I hadn’t been fed nonsense. Your subsequent post is a tour de force - you definitely have a role still!
I admit that when the research and scientific data is extremely complex, my smouldering brain, what is left of it, goes into overwhelm mode. Which is why you, as an interpreter, are an absolute necessity. I do not trust AI for a full picture. What fascinates me is the testing process for MS in general is unsatisfactory. There seems to be much that is unexplored. Do not think the selfie can be replaced!
Would you be writing a post soon on the latest research about CAR-T cells for progressive MS.
And could you explain in more detail the mechanism of how this promising therapy would work (link below)? Also, could it affect the processes that cause smoldering MS? Since I’m not sure which processes this should therapy target. Thank you for writing about smouldering MS.
I enjoyed reading the AI post, as well as this post. We definitely still need you, Dr. G. As you pointed out, Gemini has some significant blindspots. To me, as someone facing smoldering MS, your post was more hopeful - you actually tried to dig into the root causes of our disease, which is what is needed to find more effective treatments. The other, most important, reason that we need you is your advocacy and network. AI isn't going to attend conferences and talk to other doctors and researchers about the need to address EBV, but you are doing so. As an expert in the field with a following, you have influence. AI does not.
Emaill: "Possible typo?:
'Natalizumab may reduce smouldering MS, but it does not stop smouldering MS, which, in my opinion, is the real MS, and this may take many decades to manifest itself.'
Is the first line relapsing ms?"
No. PwMS treated with natalizumab have reduced brain volume loss and reduced microglial activation on TSPO-PET imaging, which are biomarkers of smouldering MS. It is clear smouldering MS is reduced by natalizumab, but not stopped.
Thanks for your comments on AI blind spots on the question of 'Inside out' and bacterial toxins. What you get clearly depends on who you ask and how you put your question! I was astonished by the insightful and comprehensive response I got using 'Google studio' , asking the question, What is the significance of Staph aureus sphingomyelinase in relation to the high rate of Multiple sclerosis on the Orkney islands? If you anticipate asking more questions on this topic, you may also find it useful! Very best wishes. I really don't know how you manage to keep up with all of this !!
The answer is “YES,” your expertise and insights are highly sought despite the prevalence of AI-generated trash. Thank you for this piece today, and I am intrigued to learn more.
Hi Prof G.
Thanks for all your thoughts and analysis about AI generated information. Also, to reassure you that your comments, views and information are very much appreciated and needed.
I see the positive aspects of AI, in that it is able to process and assess data in a much quicker timeframe than us humans but I see the fallibility of relying on AI information without the ability to realistically critic what it produces. I have a concern that if we go too far down the AI route that most of us will end up believing all it produces, losing the ability to critically assess its content. I wouldn't be able to analyse that sort of advanced content and worry that others, who may also be less informed like me and less likely to bother to do such an assessment, will come to rely on it de facto. What happens if the next generation of student medics use AI without ensuring that they are able to critically review such output? Will we start to depend on AI and lose the personal knowledge and learning that can develop from our ability to reason, based on sources of primary information?
Your MS Selfie content is still very much valued. The content, as I see it, appears to fall into two categories. One category seems to cover practical, experienced knowledge on how best to self manage our own issues eg, bladder, cognition, DMT suitability, testing, taking control and challenging our neurologists if required, our everyday management of our personal MS and the other - the scientific and medical background of the disease and the latest trials, developments, treatments and theories. I'm interested in both but sometimes find that the science/medical background can become overwhelming in detail as , even though I have been trained as a scientist and have worked in pharmaceutical production, I'm not a neurologist/immunologist and unless you become immersed in this area then the detail can be difficult to follow. Would some sort of division that splits your content into either area be a helpful step? Electronic machine/systems are in no way as valuable as the human contact/information/opinion that is currently your output on MS Selfie
The Q&A newsletters are for paying subscribers and people who can't afford a subscription. The Q&A feature is how I support the site and the associated MS-Selfie activities. In short, I use the income to hire people to help me.
On the Substack website, you will see at the top of each newsletter a classification system. Either is a general newsletter labelled MS-Selfie (self-management), Q&A and MS-Selfie Research. This is how you can sort out at least three different types of newsletters. Sometimes I forget to label them correctly, so it is not always correct, but a good guide.
Hi Dr. G. I am a founding member of MS- Selfie and personally have PPMS. I havetaken Ocrevus, HSCT, Stem Cells, Multiple Med Parasite cleanse, AIP diet, Hormone therapy, supplements, and work out every day. Out of it all HSCT was definatley the most effective. I truly believe the EBV could be the cause and my numbers are always very high. I was wondering what HIV antivirals have shown the most promise or success so far in decreasing MS disease? I know Tenofovir is one but want to know if there are any others that showed promise? I have sent you this question a couple of times but not sure if I am sending it through the correct portal. My email is clarket79@gmail.com if that would be easier. I am a physician myself and would appreciate your input. Thanks!
The Toxins part made me think of someone with MS that I know that just did a Fecal microbiota transplant (FMT). Curious to know whether you have any thoughts on FMT for MS?
Unless part of a clinical trial or to treat a disease for which FMT is licensed (pseudomembranous colitis due to C. difficile), no one with MS should be having FMT.
The MS-Selfie continues to be very relevant for me. And most others have covered my concerns on relying on AI without critical eyes. One thought though is, those people with MS who have done well on antiretroviral treatments is thus due to their multipronged actions ie hitting a number of viruses at the same time?
In addition, the LLMs at present don’t necessarily go beyond their training material
This is wrong for all the deep research tools, crawling the web is their very purpose. Paywalls are a big issue however.
For regular queries you can usually trigger web search in the prompt if the LLM does not do it by itself.
I didn't explain _why_ I wasn't going to read the LLM output, but I suppose I should have. The issue is that I don't have the expertise to identify problems -- particularly not once you edited out the straight-up hallucinations. And it seems very likely that at least some of the incorrect AI output would stick in my head, even if I tried to read it skeptically, and someday in the future I'd pull up an idea that was wrong but I didn't remember the provenance.
I'm very very good in a different technical field and a big part of that is that I curate my own inputs.
I believe pretty strongly in human expertise and definitely feel there is still a need for you, as well as my own very good neurologist. When I have questions as a patient, I need to be told the correct answer, not the next plausible token.
I find myself wondering how Gemini would deal with your critique or come to that a variety of critiques from different perspectives. Not at all sure how it could be arranged but could the ongoing iterations of AI analyses and multiple feedbacks/ critiques provide some really useful AI assisted answers? ( I and sure that at least for the time being your analyses have an important role and place).
In 2004 shortly after I was diagnosed due to a blind spot in left eye, I saw a nutritionist for Candida and had a stool analysis. I need to review the results, but there were unexpected toxins that surprised the nutritionist. Not strep, or C-diff, the one I remember was a black mold
I have a question. If EBV is the culprit, it would seem that those of us with MS should be tested regularly for EBV?
I have the antibodies. But medical professionals aren't doing anything about that, because the long term effect of the virus isn't fully understood. There aren't any treatments currently that address EBV.
Hi Prof, I actually learned a lot from the AI output, not being familiar with the basic controversies in the area. However it was verbose. In additional to scotomas, it is hard for the layman to detect fluent bullshit - I wanted to read your post to check that I hadn’t been fed nonsense. Your subsequent post is a tour de force - you definitely have a role still!
I admit that when the research and scientific data is extremely complex, my smouldering brain, what is left of it, goes into overwhelm mode. Which is why you, as an interpreter, are an absolute necessity. I do not trust AI for a full picture. What fascinates me is the testing process for MS in general is unsatisfactory. There seems to be much that is unexplored. Do not think the selfie can be replaced!
Hello Prof,
Would you be writing a post soon on the latest research about CAR-T cells for progressive MS.
And could you explain in more detail the mechanism of how this promising therapy would work (link below)? Also, could it affect the processes that cause smoldering MS? Since I’m not sure which processes this should therapy target. Thank you for writing about smouldering MS.
Here is the article link:
https://www.news-medical.net/news/20250915/Researchers-receive-new-funding-to-advance-promising-therapy-for-multiple-sclerosis.aspx
I enjoyed reading the AI post, as well as this post. We definitely still need you, Dr. G. As you pointed out, Gemini has some significant blindspots. To me, as someone facing smoldering MS, your post was more hopeful - you actually tried to dig into the root causes of our disease, which is what is needed to find more effective treatments. The other, most important, reason that we need you is your advocacy and network. AI isn't going to attend conferences and talk to other doctors and researchers about the need to address EBV, but you are doing so. As an expert in the field with a following, you have influence. AI does not.