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RealTalk MS
Episode 443: The 2026 ACTRIMS Forum (Part 3) with Dr. Helen Tremlett, Dr. Ilana Katz Sand, and Kathy Smith
00:35:59
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- [00:01]
A
I'm john strum, and this is real talk, mississippi. It's February 24th, and we have a lot to talk about today. In our final coverage of the 2026 Actroms forum, three remarkable guests help us bridge the gap between cutting edge clinical research and the lived experience of Ms. First, I'll remind you that this episode of Real Talk Ms. Is sponsored by ABLE now, a Tax Advantage savings program for people with disabilities. If you're living with multiple sclerosis, this is important news. Expanded federal rules mean more adults with disabilities, including many people with ms, can open an ablenow account. ABLE now lets individuals save and invest money without affecting their eligibility for certain public benefits, such as SSI or Medicaid. For many of you, it can be an essential financial tool. To learn more and understand if you're eligible to open an account, visit ablenow.com and you'll find that link in today's show. Notes when we talk about multiple sclerosis, we often focus on the point of diagnosis and everything that follows. But what if we could see it coming years before the first clinical symptoms even develop? Dr. Helen Tremlett's pioneering research in identifying the prodromal phase of Ms. Is rewriting the timeline of this disease. In a moment, you'll meet Dr. Helen Tremlett. Doctor Helen Tremlett is a professor of neurology at the University of British Columbia in Vancouver, Canada, where she heads the Tremlett Lab and the Epidemiology and Multiple Sclerosis Research Program. It's good to see you again, Dr. Tremlett.
- [02:04]
B
Oh, it's such a pleasure to be here. Thank you, John.
- [02:07]
A
For a long time, it was believed that Ms. Started the day a person had their first major symptom like optic neuritis. However, thanks in large part to your groundbreaking research, it's been shown that Ms. Has what you might think of as a as a hidden chapter that can begin 5, 10, even 14 years before an individual develops their first typical symptom of multiple sclerosis. That hidden chapter is known as the Ms. Prodrome. So why is it so important to be able to identify Ms. In this prodromal phase?
- [02:44]
B
Now, that's a really great question. So we think it's important because studies have shown that treating multiple sclerosis early has been associated with better outcomes than later treatment. So then, if the disease is biologically already started before that classical optic neuritis or that classical Ms. Symptom, there's potential opportunity to pick people up earlier and manage their disease earlier and ultimately then have the potential for biggest impact in terms of disability, regression and future outcomes, and hopefully as well, understanding this period before classical Ms. Symptom onset could maybe even help us accelerate the diagnostic journey and the time it takes to get a diagnosis. I think what we find in that period will also help understanding that journey towards diagnosis.
- [03:45]
A
Well, during that period, you've discovered that people often visit doctors for other things, things like anxiety, sleep issues, even bladder problems years before their Ms. Diagnosis. For someone listening who has a family member at risk of developing ms, are these things red flags they should actually be looking for at present?
- [04:09]
B
No, unfortunately, a lot of the things we're picking up, it's very exciting what we're finding, but that's not specific enough to enable us to identify people with any certainty in this, what we're calling a prodromal phase. Identify people who are going to develop Ms. Earlier than we can do presently. So, you know, just to give you a flavor for some of the findings that you highlighted there, around 14, 15 years before Ms. Symptom onset, this is work we've just published a few months ago. We're finding that people are more likely to visit a physician for ill defined signs and symptoms, which includes things like fatigue and sleep issues. We also find around 40, 15 years before Ms. Onset, more visits to the physician for depression and anxiety. Then we've got visits to physicians kicking up around 12 years. And so it goes on. So you can see that a lot of these conditions, constipation is in there as well, more likely in the Ms. Population. A lot of these things are not specific to Ms. And we can't currently use them to identify people with Ms. Earlier. But it does suggest that we could pack together these signs and symptoms along with other biomarkers such as serum neurofilament like levels and others with risk factors that we know are associated with Ms. Onset to be able to identify people earlier. We're just not there yet.
- [05:49]
A
Beyond your work in sharpening our understanding of the Ms. Prodrome, you and your team have explored so many other rich research topics. For example, the subject of comorbidities or other health conditions that someone living with Ms. Might also have. I know it's a topic that your team has done a rapid review of about 100 different studies that examine the effects of other health conditions on starting ms, disease modifying therapies, on disease progression, even mortality. You were able to show which specific comorbidities were associated with greater Ms. Progression, which comorbidities were associated with someone not starting a disease modifying therapy, and I thought that was fascinating work. What can you tell me about that?
- [06:40]
B
That was really a very nice study, actually, led by our PhD student, Hannah Frank, who you just met. There's a lot to unpack in that, in that scoping review. I'll just briefly summarize, maybe just to give you a flavour of some of the findings. And this is work particularly I've been involved with with Professor Ruth Ameri and colleagues. For example, we find a general effect with comorbidities. So as the more comorbidities an individual accrues, particularly when you get to three comorbidities relative to none, then that in particular seems associated with more, say rapid disability progression or increased risk of relapse, subsequent relapse. And then of course we find a specific effect. And again, just give you a flavour of some of the findings. We find that in terms of disability progression, we found an association with mental health related issues, so depression, anxiety, bipolar disorder, cardiovascular disease, and associated with increased risk of disability progression and epilepsy. And then in terms of comorbidities associated with higher relapse risk, we for example, have found hyperlipidemia and migraine associated with increased risk of relapse. But there are a lot of other findings in there to unpack and it was summarized in that scoping review. But that's just a flavor of some of the findings. Of course, it begs the question, you know, these associations, I think are really exciting. It does beg the question, if we could manage comorbidities in Ms. More appropriately, could you then alter outcomes and ultimately benefit that person's Ms. As well as the comorbidity itself? And that really has to be demonstrated and studied further.
- [08:36]
A
I think part of that falls on the person who's living with Ms. To not simply say, oh, something else has popped up, it must be my Ms. It's not always going to be their Ms. It could very well be a completely different health condition.
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B
Yeah, and I think sometimes it can be tough for the individual and the physician to tease those apart as well. But yes, that's important.
- [09:02]
A
In your research involving children with ms, what have you learned about the role of the environment? Is there something in our modern world that's triggering the gut to misbehave and attack the central nervous system?
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B
That's a really great question. So I've been privileged enough to work with some of our pediatric neurology colleagues and we've looked at the gut microbiome in children with and without multiple sclerosis. Now, these individuals, these children, they've already developed Ms. So we're looking at the gut microbiome after they've developed ms, although we did get stool samples from children very early in their disease course. And I think in a nutshell, we find differences between the children with Ms. And those without that do suggest there's sort of an upregulation of an inflammatory kind of related milieu in that signature in that gut microbiome and that diet may play a role in that. I cannot tell you what causes what though. And animal models I think are probably given us the best suggestion that the gut microbiome may contribute to triggering multiple sclerosis. But it's just so hard to prove that in humans. So I can't tell you that these kids have changed their diet because they have ms, or if something in the
- [10:35]
A
diet
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B
and then related to the gut microbiome then facilitated triggering the Ms.
- [10:46]
A
I'll ask you to cast your gaze into the future for a moment. Something no scientist likes to do. I know, but from your perspective as an epidemiologist, do you think the cure for Ms. Will be a drug that fixes the damage or will it be a way to identify and stop the disease before someone's first Ms. Symptom ever occurs?
- [11:10]
B
Oh, I'd like to say all of the above. Yes to both. You know, I think both are potential. I do like the National Mass Society's Pathways to Cures with an S because there are many definitions of cures. I think that the field is on a cusp of tackling these different cures in many different ways. I'm particularly interested in ability to pick up people earlier than we can do presently. And I do think that's feasible, say in the next, in the foreseeable future, in my lifetime. I do hope that is a, an achievable goal.
- [11:53]
A
I share your vision. I kind of see the path forward being to one of those cures being being able to identify someone before they've had that first typical Ms. Symptom, treat them aggressively with a high efficacy, something or other that will be around them, and perhaps they never experience the Ms. Disease journey that's so familiar to our listeners.
- [12:18]
B
That would be fabulous. I think we've got to really find an intervention that's acceptable to people in that very early phase. We've learned from studies in radiologically isolated syndrome that it's tough to randomize people into a study where they're going to take an immune mediated drug or disease modifying therapy when they, from their perspective, they have very few signs or symptoms suggestive of a disease such as Ms. So we really need to find interventions that people are going to adhere to, and I think there's opportunity here to, you know, repurpose other drugs that have got very good safety profiles. I don't know if coming in with very aggressive treatment is going to be acceptable to people or the risk benefit is going to be there. But yeah, it's exciting times.
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A
Certainly are, and the work you're doing makes them all the more exciting. So thank you for everything you do to improve the lives of people who are living with Ms. Once again, it's always great being with you. Thanks for talking with me today.
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B
Oh, thank you, John. I really love your podcast and I think your ability to communicate science is amazing. So thank you very much.
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A
Well, thank you for that. Dr. Ilana Kat sand is one of the world's leading voices on the intersection of diet and Ms. At the Actrooms forum, Dr. Cat sand presented her team's latest research on how nutrition impacts multiple sclerosis. And in a moment, you'll hear my conversation with Dr. Alana Kat Sand. Doctor Alana Kat sand is an associate professor of neurology at the Icahn School of Medicine at Mount Sinai and the associate director of Mount Sinai's Corrine Goldsmith Dickinson center for Ms. Her research is focused on investigating the connection between diet, MRI findings and clinical disability to gather more evidence on the most effective eating patterns for people with Ms. Dr. Katzand is at the Ektrams forum, where just a few minutes ago she presented new research on the relationship between diet, something called leukocyte telomere length, and disability among people with Ms. And just a quick definition, leukocyte telomere length measures the protective caps called telomeres on white blood cell chromosomes. And this is something that's useful as a biomarker for biological aging. Good to see you.
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C
Great to see you as always, John. Thanks for having me.
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A
In the past, you've shared research linking healthy dietary patterns to greater brain integrity on MRIs. For someone newly diagnosed, how does what they eat today potentially change the way their Ms. Looks on an MRI five years from now?
- [15:04]
C
So that's a really good question and definitely something that is worthy of further study and something that we actually are going to be looking at from a longitudinal perspective. Within the study that I presented today, we don't have data that look like that just yet from our cohort. But what we think based on the cross sectional data that we have previously presented in terms of MRI findings, we do think that dietary habits are associated with brain integrity on mri. And from what we see and work that we were able to present today, there is definitely a link between dietary habits and at a point in time, and then kind of looking forward over the next few years what people can expect in terms of Ms. Related disability. And we do think that people who follow a diet that is in higher alignment with the Mediterranean pattern have an advantage.
- [16:02]
A
I know some of your research, you've looked at the Mind diet, and if someone living with Ms. Wanted to start the Mind diet tomorrow morning, what are the big three foods that they should add to their grocery list? And what are the three that they should maybe try to phase out?
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C
Ooh, you're going to make me choose only three. So I think actually the biggest one, I would say is really olive oil. And actually when we look at some of the previous work that we've published, olive oil seems to be the strongest driver of the relationships that we've observed. So I would say definitely olive oil and then I would say definitely berries. And then I'm gonna have to choose for leafy greens and also nuts. So if we're okay with that, we're okay with that. In terms of things that people should be avoiding, I would say we want to do our best to really avoid ultra processed foods as much as possible. I think that's something we're seeing kind of everywhere these days, is that we've really learned over time more and more that these ultra processed foods, which are designed to be highly addict and taste really good and are also really convenient, are unfortunately really not good for us. And so I would say cutting back on things like, you know, red meat and especially like ultra processed meats, cutting back on baked goods. And then the last one, I would say, I would really say cutting out sugar sweetened beverages. That's a big one.
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A
Very often dietary research seems to focus on early stage Ms. I know in the past you've looked at progressive Ms. As well, and I'm wondering what you've learned about whether, making a change in diet, if you're someone who's been living with progressive Ms. For a long time, whether that can still have an impact on your overall wellbeing.
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C
That's a great question. My sense is that it can. And from a research standpoint, in the work that we've previously published, which again, that work is cross sectional, meaning it's a single time point. So it's a little bit limited in terms of what we can conclude about making changes to the diet and what will happen in the future. But just looking in Cross section. The results that were the strongest in our prior study were actually in those who were living with progressive Ms. And so we, we think that is part of what led us to conclude that we think that this is a neuroprotective mechanism. At least one of the mechanisms is neuroprotective. And why I think looking at the progressive population is so important. We actually have a trial that's fully designed, unfortunately has not yet been funded, but that's specifically is focused on a progressive Ms. Population because we do think that this is so important.
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A
Well, when that funding finally comes through, you have to let me know so that we can share it with the audience and help recruitment.
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C
Oh, that would be amazing. Thank you.
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A
Patients often want to know if they can treat their Ms. With diet alone. As someone who sees lifestyle as a core part of a treatment plan, how do you explain the partnership between disease modifying therapies and lifestyle changes to the patients you see in clinic?
- [19:17]
C
So I explain it exactly as that as lifestyle is a core part of the treatment program. So I always tell my patients that my preference is for us to come at this disease with everything that we have. And that means that we come at it with a traditional disease modifying therapy and with lifestyle. In my experience, my patients who do the best in the long term are the ones who really do both of those. And why wouldn't we try to use every tool at our disposal? So I do have some patients who come to see me because they know I'm interested in this topic and they're kind of hoping I can tell them, you know, okay, if you have a good lifestyle, you don't need to take a medicine. And sometimes they're a little bit disappointed with me when I tell them that's actually not my recommendation. I really just think that we need to be thinking from all angles and we need to use these different approaches together.
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A
Well, as I said a few minutes ago, you're here at the Actrooms forum having just presented some cutting edge research on diet, leukocyte telomere length and disability in Ms. What can you tell us about that research?
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C
Well, what I can tell you is that we have a long way to go in this research, but I think the results that we have so far are pretty exciting. What we were able to show today is that leukocyte telomere length, which is just one among many ways that we can measure biological aging, is associated in our sample with worsening of Ms. Related disability measured by the expanded disability status scale score, which is what we often use. In clinical trials. So worsening over six years was associated with leukocyte telomere length, which we found to be really interesting as a measure of biologic aging. In addition, we were able to show that people's dietary habits were associated with EDSS worsening over that six year period. Then we were able to look at the relationship between diet and leukocyte telomere length and showed a relationship there. The most notable part of that relationship is that the biggest observation was really for people who had a very low meta score, their LTL was clearly very different from everyone else in the cohort. So that was very interesting to us. And then finally we showed kind of a preliminary mediation model. So since we were looking at these relationships among these three different factors, the Mediterranean diet score, leukocyte telomer length and disability, we looked at kind of those in all different ways. But the last thing we wanted to do was look at how, when we look at that relationship between diet and disability worsening, how does it look if we put LTL in the middle? And so what we found is that LTL explained about 16% of the relationship between diet and EDSS worsening. And so that was pretty interesting to us.
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A
So it sounds like this opens up a pathway that eventually could lead to a different kind of intervention.
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C
We hope so. We're working on that already.
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A
Coming attractions well, Dr. Alana Kat Sand, I want to thank you so much for your time. I learned something. I know I always say this to you, but I learned something every time we talk and enjoy the rest of the conference.
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C
Thank you so much, John. Thanks for having me.
- [22:31]
A
As someone who lives with ms, Kathy Smith is helping redefine how we categorize and communicate the reality of multiple sclerosis. At the actrooms forum, Kathy co chaired a vital session focused on the evolving conversation around the terms we use to describe Ms. In a moment you'll meet Kathy Smith. I first met Kathy Smith when we both served on the International Progressive Ms. Alliance Scientific Steering Committee. And we've been reunited as members of the International Advisory Committee for Ms. Clinical Trials Course Descriptors Working Group. Today at the ACTRIMS Forum, Kathy co chaired a session titled Rethinking Ms. Clinical Course Descriptors. It's always good to see you, Kathy.
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D
Hi, John. It's great to see you. And of course we're in this beautiful place in San Diego where the weather is wonderful.
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A
Certainly is. You've lived with Ms. For two decades. So in your experience, how well do the current labels like relapsing remitting, secondary progressive actually describe what life is like on a day to day basis for someone living with Ms. Well, John, that's
- [23:51]
D
a very big question, I think. But from my perspective, they don't really serve me anymore. And I know from talking to others with Ms. They don't always serve other people either. And I would say, you know, so you're right. I've been living with Ms. For 20 years and I still have the label, if you like to call it, of relapsing, remitting Ms. But I have not had a relapse in probably 17 years. And I notice subtle changes in my walking, in my speech, in other functions that are subtle and don't really fit with relapsing, remitting Ms. You know, it's
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A
not uncommon for someone living with Ms. To be told by their neurologist that their MRI looks stable, but they themselves know they aren't doing as well as they were six months or a year ago. How does rethinking our course descriptors help capture that hidden progression?
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D
So I think that the community is certainly beginning to realize, acknowledge, commit to that we need different course descriptors and that we might not throw away all the ones that we currently have, but we would add other dimensions of a person's journey to the descriptors. So I'm thinking about, you know, clinically people might be relapsing or they might be progressive, but then there's so much more to it than that. So what is your, so what are the biological things that are happening in a person's body? What are perhaps some of the more functional daily living kinds of things? You know, can I still do the hiking that I want to do, Can I do my crafts, you know, whatever it is that people like to do, but very much about functional and everyday life. And then, and then the last part would be to think about sort of the modifiers, the things that a patient can control for themselves. So smoking, diet, what is your vitamin D level, things like that that don't necessarily get included today in course descriptors would be part of this new assessment.
- [27:11]
A
As a scientist, you know, that definitions drive research and treatments. Why do you think the Ms. Community and this session that we just watched here at actroms, why is there a focus on changing the way we describe Ms. Now?
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D
Well, I think that there's a general recognition that Ms. Is one disease that may have distinct phases, but I think that the science has advanced to allow clinicians and researchers to say, actually this isn't these are not distinct. So they're not distinct diseases. It's all one disease. And a patient can go along the continuum, they can come back along the continuum. So I think that the advances in science have made the time ready to go for a new course descriptor.
- [28:20]
A
A moment ago you just referenced this shift toward looking at Ms. As one continuous disease along a spectrum rather than separate types for a patient. What's the benefit of moving away from these more rigid categories?
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D
Well, I think, I think the benefit would be that people don't get pigeonholed or somehow labeled. You know, I know people who have a diagnosis of secondary progressive ms, and that can sometimes be a scary place to go if they've previously been relapsing, remitting, and now they're secondary progressive. And I think people tend to think, oh, that's, you know, I'm there now, I can't move. Whereas with a much more sort of dynamic, continuous idea about ms, people would be able to move between phases to sometimes get better, sometimes get worse, sometimes stay the same.
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A
Does changing the way we describe the disease change the way doctors might prescribe medication? Could a quote, unquote relapsing patient be treated with quote, unquote progressive strategies earlier or when necessary?
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D
So I think that having this possibility of a new way to describe Ms. Opens up more possibilities. And putting aside the fact that we'd have to get regulators and everyone, the whole community has to buy in, ultimately what we would be, I think, hoping for is that because an individual's biology is better described, that the drugs that could be used, the therapies, maybe drugs, maybe other kinds of interventions could be used based on the biology and some of the other factors, rather than just these very kind of rough categories.
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A
If we successfully rethink these course descriptors, how do you think a visit to the neurologist will look different five years from now?
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D
Yeah. So, I mean, I have to say that I feel like my neurologist is very, already tuned in to a lot of these different dimensions of ms, because a visit for me. So let me say, you know, ideally, what I would hope is that there would be a visit that would include discussion about, here are the MRI findings for you this visit. Then some clinical tests, some clinical, you know, time, 25 foot walk or whatever clinicians are used to doing for clinical assessments, there might then be a discussion about biology. So what kinds of biomarkers do you have and how those would perhaps affect your prognosis and your likelihood of progressing and then go from there to okay, how are your sort of functional domains? Can you still do all the things that you want to do? And if not, what, what are they and what can we do about those? And then probably lastly checking in on diet and making sure you're not smoking and the other kinds of things that I could modify by myself to help myself with this disease.
- [32:42]
A
You've been involved in this course descriptor work for a while now. What's been the biggest and up through today's session, what's been the biggest aha moment for you?
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D
Well, yeah, I don't know if it's an aha moment, but it's a real. I mean, I feel very optimistic about all of this because I feel as though the community is really listening, listening to what patients need and what the patient's lived experience is like and trying to match up the course descriptors with what's actually happening in reality. Which, I mean, maybe that's not an aha moment, but it's more of a feeling of everybody is trying to drive
- [33:44]
A
towards the same thing and that's always a good feeling.
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D
Yeah.
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A
Well, Kathy Smith, I'm already looking forward to the next time our paths cross. It's always wonderful seeing you and talking with you.
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D
Thank you, John. Same, same, same. Good to talk to you.
- [34:02]
A
That's going to wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 443. You'll find that link in today's show Notes, so you can easily copy and paste it right into an email or a text. GLP1 drugs have quickly become the miracle drugs of the 21st century. We know them better by their trade names like Ozempic, Wegovy, Zepbound, and Manjaro. And while they're best known as drugs that manage diabetes and promote weight loss, researchers are finding that these drugs are also effective in reducing the risk of heart attack, reducing high blood pressure, protecting against chronic kidney disease, improving fatty liver disease, reducing addictive behavior, and potentially mitigating cognitive decline. So what about ms? Be sure to join me next week for my conversation with Dr. Ellen Mowry, the principal investigator in a clinical trial that's focused on determining whether a GLP1 drug can reduce brain inflammation and protect neurons in people living with progressive Ms. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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D
Sat.