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RealTalk MS
Episode 435: Revisiting ECTRIMS 2025 with Dr. Bruce Bebo and Kristine Werner Ozug
00:24:01
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- [00:01]
A
I'm john strum and this is real talk, mississippi. It's December 30th and we have a lot to talk about. We're closing out the year by revisiting the single most listened to episode of Real talk Ms. In 2025. And it shouldn't come as a major surprise that that episode was our review of the largest Ms. Research conference in the world, Ektroms. This episode features the annual conversation that I have with Dr. Bruce Beebo right outside the conference center just minutes after the conference adjourns. Dr. Beebo is the Executive Vice President of Research at the National Ms. Society and each year he very generously closes out so three days of non stop meetings, presentations and research reviews to share his initial thoughts on some of the announcements and presentations that caught his eye during the conference. In a moment, we'll revisit my post ectrims conversation with Dr. Bruce Bebo.
- [01:22]
B
Well, 2025 Ektrams is in the books. Literally just minutes ago, the meeting adjourned. And once again, at what is now one of the highlights of my trip to Ektrams every year is the opportunity to speak with Dr. Bruce Bebo, the Executive Vice President of Research for the National Ms. Society, and get his impressions of what the meeting was all about this year. Good to see you again, Bruce.
- [01:52]
C
Good to see you, John, as always. And I know it's a few years now we've been doing this. I look forward to it as well. And it just happens to be a nice, sunny, glorious day outside. So it's a pleasure to be, be, be outside with you. So yes, we just walked out the door of the, the 2025 EKTrams meeting. This is the largest meeting in the world that's focused solely on Ms. There are other meetings that happen that talk about Ms. And talk about other conditions, but this is a meeting focused completely on multiple sclerosis. There are about 10,000 people from all over the world, I don't know how many countries, dozens of countries, maybe more, that are all coming from their laboratories and their offices to report on the outcomes of the research they've been working on for the last year or longer. And so it's about 10,000 scientists, about 1800 poster presentations and another hundred lectures, and a gigantic convention center here in Barcelona. So this is the event I look forward to the most every year and I get energized from this and it's really exciting. And so the theme of this year's meeting was essentially precision medicine. And what I mean by precision medicine really is finding the right treatment for the right person at the right time. It's about understanding the underlying biology that's driving the clinical presentation of disease in any individual person and developing and then using a treatment that targets that particular biology. And so, as I think about, I've been going to this meeting now for 20 years. This concept of that precision medicine would not have been something we talked about 20 years ago. And it's really inspiring and hopeful that we're getting ever closer to that desired goal. Well, of course the desired goal is to find a cure, but until we have a cure, to have those treatments, it's not hit and miss anymore. You know, you don't have to guess which treatment's going to work in an individual person, but you can actually identify what is. So that's the goal. And we're getting ever closer to that, to that goal.
- [04:09]
D
So some highlights for me for this week include the presentation of the now published McDonald diagnostic criteria. So the Society, along with the Ektrems, which is the sponsor of this meeting, have worked together over the last several years to reevaluate the old diagnostic criteria and update them to include some new.
- [04:36]
C
Technology that allows us to better measure MS, both through blood tests and through imaging tests. And in a nutshell, what it's going.
- [04:48]
D
To allow us to do is diagnose Ms. Faster and earlier. So in these new criteria, one especially, I think exciting thing to point out is under certain circumstances, we'll be able to diagnose Ms. With just imaging and a blood biomarker without any clinical signs specific to Ms. Being apparent. So we can diagnose Ms. Before, again, some specific cases before there are even clinical symptoms and be able to treat a person who is in that phase of the disease with undoubtedly improved better outcomes than if we would wait till.
- [05:33]
C
The clinical presentation of the disease.
- [05:35]
D
So that's one of the super exciting things. And I think we're seeing research at this meeting and the Society certainly investing and focused on research to move that needle even farther over the diagnosis of Ms. Even further, or let's say closer to the triggering event of the disease. So we may get to a point, I think we'll get to this point sometime soon where we'll be able to diagnose Ms. Just based on some blood or based pattern of signals from the blood that will tell us somebody's in this pre Ms. Phase and be able to treat it.
- [06:19]
C
Before it even affects the nervous system.
- [06:20]
D
So that's what we're going for. And these diagnostic criteria get us a step there. I think another in this concept of precision medicine, there were lots of presentations at the meeting this week looking at how the disease modifying therapies we have now perform in the real world. So they're tested in very controlled environments, in clinical trials with a very controlled population of people, and they can sometimes perform differently in the real world and real people that have, let's say, other health conditions later and on top of their Ms. So there is a lot of science presented here looking at how disease modifying therapies perform in the real world, learning about who responds to them and who may not respond to them, and getting again, more information that can help healthcare providers actually make a better recommendation around which therapy is going to work for an individual person. And that's information that is generated at meetings like this and gets us closer to this precision approach, I think related to specific therapeutics. This Bruton tyrosine kinase as a therapy for, particularly for progressive Ms. We're learning more and more about how these drugs work and how the potential of them to actually treat progression. So there were updates from a number of the. I think there's at least three or four active BTK programs that are in clinical trials at the moment. So we heard some updates from some of those that I think are promising. One of the things I learned at the meeting was that one BTK inhibitor is not like the other. So they're targeting a certain pathway in immune B cells and there's some common connection between them. But there's a lot of devil in the detail here around the structure of the molecule, around the vehicle that it's delivered in, around the dose and timing and the pharmacology of these agents that make them. They're very different from each other. And some of these subtle differences are, I think we're showing up in big differences in how they perform in clinical trials. So all of these BTK inhibitors that you'll be hearing more about are all.
- [08:55]
C
Different from each other in sometimes subtle ways, but they're resulting, I think, in significant differences in how they're performing clinically. Um, so I, I think that that was a, another takeaway for me.
- [09:08]
B
As you pointed out, with a hundred presentations and a couple thousand posters and abstracts all taking place within roughly three days. There's still a lot to catch up on. So I'm going to invite you back in a couple of weeks after you've had time to digest all your notes, go through all of the presentations and give us another perspective on what was in this conference. Besides just the highlights, what might be some of the buried treasure that you'll uncover for us.
- [09:42]
C
Yeah, I look forward to doing that, John, and it'll be a lot of fun.
- [09:46]
B
Well, I thank you again next year. Ektrom's 2026 is in Toronto. I will meet you outside the conference center a few minutes after it ends.
- [09:59]
C
Yeah.
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D
Hopefully the weather will be just as nice as it is here.
- [10:02]
B
We can hope.
- [10:04]
A
In producing this episode, I also wanted to capture a patient's perspective on what can easily become an overwhelming three days of presentations, news and announcements. Christine Werner Ozug is a member of the Real Talk Ms. Team. Christine lives with Ms. And she joined me right after the conference to share her perspective on Ektrom's 2025. In a moment, we'll revisit my conversation with Christine.
- [10:35]
E
In addition to getting the opinions of all the experts who are here presenting at Ektroms, I think it's important to get the perspective of someone who's living with Ms. And I'm very fortunate that Christine Werner Ozig, somebody who is part of the RealTalk Ms.
- [10:52]
A
Team, is here.
- [10:54]
E
What caught your eyes at ECRAMS 2025?
- [10:57]
F
The first thing I'd like to share is that I realized in the kind of wrap up session that they do at the end that There was over 9,600 attendees, over 200 faculty, and over 100 countries were represented at this year's act terms, which I think is fabulous. And like we've shared before, there are so many presentations and so many abstracts that we're not going to be able to cover them all. But I would like to try to tell you all what I think is important and what caught my interest. One of the things I also noticed is when the researchers shared their outcomes. Whenever they told us about a trial or a study that included people with ms, the first thing they always did at the end was thank the participants. That was the number one thing they did and they did it sincerely. And they really care about the people with Ms. That participate in their studies. It's very important to them because without people like us participating, they don't have research and they can't create meaningful outcomes for people like me and our listeners.
- [12:27]
E
We went to a lot of presentations, we heard a lot of science. What impressed you the most?
- [12:34]
F
So the first session, Professor Maria Pia Amato from Italy shared what I thought was fantastic, which is about cognitive symptoms in Ms. And how they're often silent. And she called upon clinicians to assess and treat cognitive issues in Ms. At the same level as physical symptoms. And I thought this was fantastic to hear as Somebody who has Ms. And has cognitive issues. I thought this was just wonderful to hear somebody call on this and say this out loud. She also called for some. Some standards and protocols and biomarkers and how we can measure cognitive dysfunction and also look at how we incorporate some cognitive outcomes into clinical trials. So this was really exciting for me.
- [13:43]
E
And I think the people who put the program together realized how important this topic was because it was the very first presentation that everyone heard. So they gave it the spotlight.
- [13:56]
F
Yes, they did. It was great. It was great to hear, and it received a lot of really good feedback.
- [14:05]
E
It's a funny thing. Cognitive issues are a serious component of living with Ms. They are almost as prevalent as fatigue, and yet they don't get the same attention paid in research. And as Maria Pia pointed out, they don't get the same attention paid in the clinic. They're barely there. When you think about when a neurologist assesses a patient and assigns them an EDSS score, cognitive is almost an afterthought. And yet it can be such a disabling bundle of symptoms. So I was glad to see that. What else did you see?
- [14:45]
F
So there were a couple of other things I heard that were really interesting to me. Just to geek out a little bit on some AI or large language models, we heard a presentation from Professor Sergio Baranzini, who is one of our favorites. And I'll just give a brief highlight of it because it is very detailed. But he's using a large language model that he developed to synthesize large amounts of data. And what he's doing is trying to assess not only Ms. Prognostics or like genetic risk, but also severity of progression. And I thought that was really neat. And then on the same vein, talking about Ms. Genetics and Ms. Risk, we also talked with Professor Lars Fuger, who, you know, a little bit ago, and people might have heard about this, published. He and his team published a study about Ms. Genes and ancient DNA from northern Europe, which was traced back to the steppe migration, steppe ancestry, and a tribe called the Yamanas, which were herders. And the gene allele that they discovered accounts for about a third of the Ms. Genetic risk. But Professor Fugger also said that's not all. There's also environmental and lifestyle factors that. That go along with it, which those combined are called epigenetics. So, yes, if a person has this gene, allow, yes, your risk is higher, but there are lifestyle changes and factors that we take into account and things that you can change. And so in that same vein, I did hear something that was pretty interesting from an expert that was there. And you might, I think you heard, overheard this too, that there was a presentation showing exercise does have neuroprotective benefits. And everyone keeps talking about, when are we going to get neuroprotection? We have it. And so when we hear exercise, and I know people living with Ms. Kind of cringe, it, it, it can mean all sorts of things. So taking a walk. Yes. But the expert we spoke with also talked about how if people use mobility aids or unable to take a walk, there's also other movements people can do like hand cycling or chair yoga or chair Pilates or other types of exercise. But it's just the studies are showing more and more that any kind of movement is neuroprotective. So that was really exciting for me to share.
- [18:02]
E
So if you just got that message and you want to figure out what might be a good physical activity that you can do no matter what level of ability you currently have, go to the National Ms. Society's website because they actually have videos that demonstrate physical activity at every level of ability. And so it's an easy way to get started on doing something that not only is going to make you feel better, but at the same time is going to actually provide some level of neuroprotection.
- [18:35]
F
Yeah. And on that same path of with brain health and neuroprotection, there was a study that I briefly saw at the end, when they do like the clinical highlights and scientific highlights, that talked about metabolites and gut health. And it was a study about processed foods and looking at specific metabolites that come from processed foods and how people with Ms. That ate a lot of processed foods and had these metabolites circulating actually had worse Ms. Outcomes. And we will actually have a little more about diet and Ms. From a great person that we interviewed at Actrom's.
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E
Absolutely. Professor Caroline Potter.
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F
Yes. And one other person I was very impressed with was the Charcot Award winner.
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E
That's a Ludwig Koppel.
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F
Yes. And he has 40 years of experience in Ms. Research and that just blew my mind. And he's been involved in helping to get approved every single Ms. DMT we have today. So he walked us through the history of, of Ms. Clinical trials and when they started going back to the 1960s, when we really didn't have clinical trials for MS, and then how we started defining them and getting more precise about how we do them today. And then he walked us through the challenges today as he sees them. And one of the challenges he sees Right now because of the landscape and everything's changing so fast, is he feels we need a standard definition of pera, which is progression independent of relapse activity.
- [20:39]
E
And just to give you a quick introduction to progression independent of relapse activity, what scientists have discovered is that progression, it's actually occurring when there is no relapse. It's so progression independent of relapse activity is definitely a hot button, if not the hot button research issue of the year.
- [21:09]
F
Yes. And he also mentioned because of that, our current high efficacy therapies who great job of reducing relapses and that kind of focal inflammation activity. But we need therapies to address just what you were talking about, which is that kind of slow, silent progression and address that pathology. And he also sees that as a challenge. He also called for revising our clinical trials and the way they're designed so that I took note. That was the second person doing a very large lecture with a very large audience calling to look at how we're designing the different outcomes and endpoints and the way we conduct clinical trials. So I thought that was very interesting.
- [22:13]
E
And those changes aren't rapid changes, but they're necessary. They'll happen over time. They almost have to. The more scientists learn about ms, the more precise they can be in designing clinical trials to really reflect the things they already know and to test those hypotheticals that they want to learn more about.
- [22:37]
A
That's going to wrap up 2025 and 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 435. 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. Dr. Leora Freeman joins me next week to pose some thoughtful and important questions that neurologists and Ms. Specialists should be asking themselves about a new category of disease modifying therapies. I hope you plan on kicking off the new year by joining us. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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G
Sam.