Episode 478: From MSToronto 2026 Patient Community Day with Professor Peter Feys and Karen Jacoby

0:20 And welcome to a special episode of Real Talk MS and the Ektrums podcast. MS Toronto 2026 concluded just a few hours ago with the event I was most looking forward to, Patient Community Day, where some of the top MS experts in the world broke down the research presented over the course of this three-day meeting and answered questions from people living with MS in easy-to-understand English. Over 4,000 people participated in this online an in-person event, I was part of that in-person audience in a packed lecture hall. And following the conclusion of Patient Community Day, I had a chance to talk with two of the participants, Professor Peter Feys, an MS rehabilitation expert from Hasselt University in Belgium, and Karen Jacoby, who lives with MS and serves as an MS Canada ambassador.

1:12 In a moment, we'll meet Karen Jacoby and Professor Peter Feys. We are just wrapping up MS Toronto 2026 Patient Community Day, and two of the participants who are up on stage sharing their perspective are Professor Peter Face from Hasselt University in Belgium and Karen Jacobi, who lives with MS and is an MS Canada ambassador. Professor Face, let me ask you, what are your key takeaways from MS Toronto 2026? Well, from my perspective of physical rehabilitation, I was quite impressed by the information we have now on brain health.

1:54 There are many factors that are contributing to brain health, like sleep that is very important or mental rest, but also physical activity and how important it is to do intensive and difficult exercises to protect your brain. As you sat through some of the presentations during the meeting, what were the hot topics that really stayed top of mind for you? I think there were two hot topics. And the one hot topic was exactly that brain health, how much evidence we have now to really recommend to work on your lifestyle, whether it is physical or your sleep or your mental stress or eat with a good diet. And I think that the evidence is now very compelling and that we should start to do that.

2:37 When we go to the rehabilitation and the exercise, the hot topic for me was that we know now how the different type of training and exercise can impact on the brain. It's not only about gym-based aerobic training on a treadmill or resistance training. It can also be very intensive balance training, doing difficult exercises or walking training. And as long as you do it with an intensity that's a bit higher than you're used to do it, for example, walking at 130 steps a minute instead of 100, and you do it regularly, like twice a week for half an hour, up to one hour, you really will have benefits. I find that really interesting and important for people who are living with MS, who are looking for something that's going to help improve their quality of life.

3:25 And what's terrific about the rehabilitation, the lifestyle side of the equation is it doesn't take another pill, it doesn't take another injection, and doesn't take another infusion, and you don't need a prescription for it. This is something that people can decide today, I'm going to do something that will improve my brain health and therefore improve my overall quality of life. And I think that is an amazing message. I agree with that. It's not expensive at all to do exercise. You can do it in your community. You can do it in your garden. You can do it in the park. So anyhow, it is important that people try to find something they like that they can do, an activity that's relevant for them.

4:09 That can make if they exercise and walking that they walk more automatic, for example, or if they have difficulties in getting out of a chair or doing functional mobility activities that they are practicing what they also need in daily life. And as long as you practice intensively, you will feel that there is an impact on the brain. There was also often a study shown from the European MS platform in Europe, and it did a survey in more than 70,000 people. And I was involved in that study and I was really also taken back by the number of symptoms that people with MS are experiencing. The average number was about 13 and a half.

4:50 However, it was already also in people having diagnosis for maximally five years from now, also already had like about 13 symptoms that they were experiencing. Typically invisible symptoms that not always are addressed, like fatigue and cognition or sensory problems or heat sensitivity. But also motor problems, and especially in the early years of the diagnosis, it is balanced as being perceived as difficult. And we know indeed in our research that there's a lot of concern about stability during movements that are going unnoticed. I think it's a very important study to realize that the treatment has to be medical, but also have to address the symptoms that are being perceived as important and having good referrals to see what advice can you give or what can you do at home for these examples that was giving you, like cognition, fatigue, or balance problems.

5:46 You know, Professor Feys, I'm familiar with that survey. We actually talked about it on the podcast when it was first published. And what surprised me was actually not the number of symptoms, but the overwhelming number of people who felt that their primary neurologist, their MS specialist, was not inquiring about them, was not asking about, especially the invisible symptoms. You know, certain things, gait and balance may reveal themselves in a 25-foot walk and other things that are part of the assessment, but they weren't even being asked about some of these other things. And to me, it's a message to the patient to be your own advocate and come in with a list of things you want to talk about and a list of questions you need answered.

6:35 And that way you can make sure that the symptom management that's important to you gets addressed. I cannot agree more on that. Indeed, neurologists are confronted often with a limited amount of time or a number of minutes even. So if the person with MS is not bringing up important symptoms, invisible symptoms also, it's a risk that it's not being addressed. Of course, from a medical field, people are thinking about solutions. So if you don't have immediately a solution, then they may not talk too long about it. However, from the rehabilitation field, we know that there are some solutions that, For example, some tips about fatigue management, what you can do, it can be cognitive behavioral therapy techniques, it can be energy conservation techniques, it may be that you are deconditioned.

7:22 Well, these are practical recommendations that could be given, but often the neurologists are working in isolation from the rehabilitation field. Or in a certain country, maybe there are not many specialized rehabilitation workers like occupational therapists, psychologists, and even physical therapists experienced with the typically complaints or the struggles that people with MS are facing. So there, there's a bridge to be made between what we know medically and what we know that is working in the rehabilitation sector. Now, the other topic is aging. And I think that clearly at the conference, people are aware that biological aging or brain aging can already start at the age of 55, 60.

8:04 But it has not been really addressed so far, how the immune system is reactive still at the age of 50. and older, but from a physical therapy side of view, also how is your performance. And we can do simple tests like getting out of a chair for 30 seconds, which is a very difficult movement. It requires a lot of coordination to get up from a chair, it requires muscle coordination, muscle strength, explosivity, and it's very sensitive to detect aging much faster than with classical methods of walking. You and I actually bumped into each other yesterday at a presentation by the International Progressive MS Alliance.

8:45 Some people tend to believe that rehabilitation is reserved for someone with relapsing form of MS. Has rehab been shown to be effective for people living with progressive MS? That's a really good question that you're asking. We see in rehabilitation studies that also people with progressive type of MS can gain. We are knowing that intensive practice of upper limb movements or on-gate movements or balance movements is leading to a benefit. We also have to be honest, however, that if people have more difficulties to move, that maybe the magnitude of the benefits is not a miracle.

9:27 So people will feel that they can move more automatic, but it does not mean that they would move normal again. However, it is worth doing that. And the next reason I want to give to the audience is that it's also trying to do things more automatic. I said that a couple of times. When we are moving, our brain can be very focused. There's one place in the brain that's giving comments to your nervous tracts, to the spinal cord, and then to your muscles. However, many people need a lot of attention to move. They need a lot of concentration to move. So it's really fatiguing as you're using a lot of different brain areas. Well, we know that if people are practicing, and maybe they are practicing dual tasking, like a combination of motor activities and cortical activities, that that actually is making new connections in the brain and making more and more the movement more automatic.

10:21 So I also encourage people to practice, to practice maybe with motor cognitive tasks together and then, maybe the movement will not be faster, but the movement will be more automatic and easier and it will be less fatiguing to start an activity. Well, that makes a lot of sense. Let me ask you, while we're talking, What are you seeing on the horizon in MS rehabilitation that has you excited? Well, what gets exciting is that now rehabilitation is much more valued than it was before. And there are two elements. It's more valued at one hand side by the medical field, that you are recognizing that lifestyle and engaging in activities is important and also impacting somehow on the brain function or the cardiovascular function or mood and fatigue.

11:15 And I think that we are ready in the future to combine lifestyle interventions with medical treatment and see if that combination can have, a different effect than just giving, indeed, the drugs without changing your lifestyle. So I think that's one thing. A second thing, I have been talking a lot more about exercise, which can be physical, cognitive, but we also have to look more to what is important for people. And then we are coming to the area of well-being. And rehabilitation by definition is trying to improve functioning daily life. And the community of researchers, also the medical community, is now getting interested like what is well-being and how do we measure that? What is the lived experience of person with MS? And can we try to find instruments like patient-reported measures, but maybe also other type of capacity test, or maybe using wearable smartphones to measure daily life activities.

12:10 That we will be able to have much more attention and try to improve well-being as well besides only brain function by MRI or very simple test-like walking. Karen, you've been very patient. MS Toronto 2026 is the largest MS research conference in the world. As someone living with MS, I'm hoping you'll share your impression of the meeting. Well, I'd like to frame my question, or rather, I'd like to frame my answer by sharing that I was diagnosed with relapsing-remediating multiple sclerosis at the beginning of 2020. Keep in mind, that was weeks before the world was introduced to the global pandemic. It was very isolating, it was very lonely, and my connection to treatment, to research, and to community was being challenged.

12:55 Thankfully, we came through that part, and I started to learn more about my disease and its progression. And I was first introduced to Ektrams online. I actually participated virtually and I am thrilled to be able to participate today in person, learning from these incredible, inspired researchers and understanding exactly where this is taking us. Because in reality, in my opinion, the most important part of me being here is the fact that I am here, that I'm able to participate and I'm able to take an active role in my health care. You know, some of the topics that were discussed at this meeting include CAR-T cell therapy, BTK inhibitors, myelin repair.

13:38 What are your thoughts on these emerging treatments? Again, I have made a lot of connections in the MS community. And through those conversations, I've come to understand just how far research has taken us. When people were first diagnosed decades ago, treatments were not available. These conversations were not filling up the rooms. Our voices were not being heard. So in total, I just feel so inspired and so excited about what this could mean for my health care, what this could mean for my outcomes, and what this could mean for my quality of life. And to be hearing from different people about how I can take control of that. Because MS robs us of so much. So it's really nice to be reminded of what we can get back, what kind of control we have, and how we can contribute and make a difference, a meaningful difference.

14:25 There were over 300 presentations at this meeting, over 1,800 posters presented at this meeting, a lot of research. Which presentations were most important or meaningful to you? The most meaningful presentations for me was Patient Community Day, where our voices and our faces were seen and heard, and how we could make a contribution to meaningful conversations and ask questions that are important to the MS community. I think that was the most thrilling moment of my life, to be able to stand and sit on that stage and ask questions from these great minds who are making a meaningful difference in my life.

15:07 When you looked out from the stage and you saw we were in, I'll point out to our listeners, we were in a very large meeting room and it was full. How did that make you feel? Well, it made me feel a lot of different emotions, but I think I was hardened by feeling like I was cared for, that this mattered and this was important. I do live in Toronto, Toronto, Ontario, Canada, and we often mention that MS is known as Canada's disease. We have one of the highest rates in the world. So to have everybody descending upon Toronto and having these really important conversations was something that's going to keep me going and is going to inspire me to continue to do more and make a difference.

15:51 Patient Community Day is a relatively new addition to this meeting. I think this was the fifth year in a row where Patient Community Day has been part of the proceedings. The day was important to you. Talk about its importance to the research community and the patient community as a whole. Well, I think it's really important for the research community because it's important to hear from the people and the lived experience, how it's affecting us, what questions we have. We know that MS manifests differently in each person, and you can only continue to gain knowledge and make decisions that can benefit us by learning from us and by sharing a room with us and bringing us to the table.

16:34 Do we need to see more of that? Is that a question? Absolutely. And I think everyone who was in that room today would agree. I think you're absolutely right about that. You know, some of the themes that are emerging are things like aging and MS, women's health issues and reproduction as they relate to MS, and as Professor Feys said, brain health. So how do those particular themes resonate with you? It resonates with me greatly because of when I was diagnosed and where I find myself today. So again, I was diagnosed at the beginning of 2020. I would have been about 33 years old at that age. I was looking forward and dreaming of building a family.

17:19 Today, I'm getting ready to celebrate my 40th birthday this December. Having said that, I am speaking to you as an MS advocate, but I'm also speaking to you as a woman who is navigating fertility issues with her husband. They're unrelated, but it's all part of the conversation of women's health, how MS affects that, how we kind of work in tandem to help support my MS treatments and also understand what my goals are in terms of building the family I'm looking for. Since you mentioned family planning, have you talked with your neurologist about the medications you're on, the disease-modifying therapy you're on, and any other adjustments you may have to make in order to facilitate your plans?

18:03 Absolutely. And I encourage everybody listening and anyone who is affected by MS and is just thinking maybe not about fertility, but just about what your long-term goals are in life and what kind of quality of life you would like to have, to have those discussions. It's important. They matter. Any differences in your MS, any ways that you could help support your decision-making when it comes to what you're trying to achieve is so, so important to work in tandem with your healthcare professionals. Was there anything that you felt was missing from this meeting that needs to be part of the meeting next year? I feel like in these meetings, we touched on some really important topics. I guess the only request I would have to have more of a fulsome conversation.

18:47 I think there is so much we can speak to, and obviously we can't take up the entire day. But having those avenues to be able to continue the discussion is really, really important. Professor Peter Feys and Karen Jacoby, I want to thank you both for taking a little extra time to talk with us today. No, thank you. It was a pleasure to be here and to be confronted also with the questions from persons with multiple sclerosis, because indeed then you know what is important for them to hear, but also to drive the future agenda. Absolutely. And thank you so much for inviting me to speak. I'm happy that I could participate in this. And more importantly, I just want to speak to the future and protecting the future of the MS community. And can we start to reframe the conversation from not just what we are protecting, but what we are gaining back?

19:39 What does it mean when we're listening to patients, we're making decisions about their treatments, healthcare? How can they start to restore and build the life that they are looking to live? 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 at realtalkms.com slash 478. 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. I also want to invite you to download the free Real Talk MS app for your iOS or Android smartphone or tablet.

20:24 It's the best way for us to stay connected. The app will automatically download the latest episode of Real Talk MS. You'll be able to download and listen to past episodes. You'll be able to save your favorite episodes. And what I'm particularly excited about is that I'll be able to share all kinds of bonus content with you, and that content will only be available on the app. So I hope you'll take a minute to visit the Apple App Store or the Google Play Store and download the free Real Talk MS app. You'll find those links in today's show notes or at realtalkms.com. Patient Community Day may have been the final chapter of MS Toronto 2026, but this is only the first chapter of our coverage of the largest MS research conference in the world.

21:10 This Thursday, be sure to catch our special episode when the Chief Research and Medical Affairs Officer at the National MS Society, Dr. Bruce Bebo, joins me to share the research and announcements that he found particularly important at MS Toronto 2026. I'm Jon Strum Thanks for listening Stay safe and make healthy choices