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And welcome to a special episode of Real Talk MS and the Ektrums podcast.
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MS Toronto 2026 concluded just a few hours ago with the event I was most looking forward to,
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Patient Community Day, where some of the top MS experts in the world broke down
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the research presented over the course of this three-day meeting and answered
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questions from people living with MS in easy-to-understand English.
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Over 4,000 people participated in this online an in-person event,
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I was part of that in-person audience in a packed lecture hall.
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And following the conclusion of Patient Community Day, I had a chance to talk
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with two of the participants, Professor Peter Feys, an MS rehabilitation expert
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from Hasselt University in Belgium,
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and Karen Jacoby, who lives with MS and serves as an MS Canada ambassador.
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In a moment, we'll meet Karen Jacoby and Professor Peter Feys.
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We are just wrapping up MS Toronto 2026 Patient Community Day,
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and two of the participants who are up on stage sharing their perspective are
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Professor Peter Face from Hasselt University in Belgium
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and Karen Jacobi, who lives with MS and is an MS Canada ambassador.
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Professor Face, let me ask you, what are your key takeaways from MS Toronto 2026?
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Well, from my perspective of physical rehabilitation, I was quite impressed
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by the information we have now on brain health.
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There are many factors that are contributing to brain health,
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like sleep that is very important or mental rest, but also physical activity
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and how important it is to do intensive and difficult exercises to protect your brain.
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As you sat through some of the presentations during the meeting,
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what were the hot topics that really stayed top of mind for you?
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I think there were two hot topics. And the one hot topic was exactly that brain
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health, how much evidence we have now to really recommend to work on your lifestyle,
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whether it is physical or your sleep or your mental stress or eat with a good diet.
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And I think that the evidence is now very compelling and that we should start to do that.
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When we go to the rehabilitation and the exercise, the hot topic for me was
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that we know now how the different type of training and exercise can impact on the brain.
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It's not only about gym-based aerobic training on a treadmill or resistance
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training. It can also be very intensive balance training, doing difficult exercises or walking training.
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And as long as you do it with an intensity that's a bit higher than you're used
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to do it, for example, walking at 130 steps a minute instead of 100,
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and you do it regularly, like twice a week for half an hour,
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up to one hour, you really will have benefits.
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I find that really interesting and important for people who are living with
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MS, who are looking for something that's going to help improve their quality of life.
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And what's terrific about the rehabilitation, the lifestyle side of the equation
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is it doesn't take another pill, it doesn't take another injection,
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and doesn't take another infusion, and you don't need a prescription for it.
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This is something that people can decide today, I'm going to do something that
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will improve my brain health and therefore improve my overall quality of life.
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And I think that is an amazing message.
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I agree with that. It's not expensive at all to do exercise.
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You can do it in your community. You can do it in your garden. You can do it in the park.
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So anyhow, it is important that people try to find something they like that
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they can do, an activity that's relevant for them.
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That can make if they exercise and walking that they walk more automatic,
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for example, or if they have difficulties in getting out of a chair or doing
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functional mobility activities that they are practicing what they also need in daily life.
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And as long as you practice intensively, you will feel that there is an impact on the brain.
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There was also often a study shown from the European MS platform in Europe,
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and it did a survey in more than 70,000 people.
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And I was involved in that study and I was really also taken back by the number
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of symptoms that people with MS are experiencing. The average number was about 13 and a half.
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However, it was already also in people having diagnosis for maximally five years
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from now, also already had like about 13 symptoms that they were experiencing.
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Typically invisible symptoms that not always are addressed, like fatigue and
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cognition or sensory problems or heat sensitivity.
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But also motor problems, and especially in the early years of the diagnosis,
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it is balanced as being perceived as difficult. And we know indeed in our research
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that there's a lot of concern about stability during movements that are going unnoticed.
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I think it's a very important study to realize that the treatment has to be medical,
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but also have to address the symptoms that are being perceived as important
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and having good referrals to see what advice can you give or what can you do
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at home for these examples that was giving you, like cognition,
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fatigue, or balance problems.
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You know, Professor Feys, I'm familiar with that survey. We actually talked
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about it on the podcast when it was first published.
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And what surprised me was actually not the number of symptoms,
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but the overwhelming number of people who felt that
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their primary neurologist, their MS specialist, was not inquiring about them,
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was not asking about, especially the invisible symptoms.
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You know, certain things, gait and balance may reveal themselves in a 25-foot
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walk and other things that are part of the assessment, but they weren't even
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being asked about some of these other things.
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And to me, it's a message to the patient to be your own advocate and come in
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with a list of things you want to talk about and a list of questions you need answered.
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And that way you can make sure that the symptom management that's important to you gets addressed.
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I cannot agree more on that. Indeed, neurologists are confronted often with
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a limited amount of time or a number of minutes even.
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So if the person with MS is not bringing up important symptoms,
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invisible symptoms also, it's a risk that it's not being addressed.
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Of course, from a medical field, people are thinking about solutions.
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So if you don't have immediately a solution, then they may not talk too long about it.
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However, from the rehabilitation field, we know that there are some solutions
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that, For example, some tips about fatigue management, what you can do,
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it can be cognitive behavioral therapy techniques, it can be energy conservation
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techniques, it may be that you are deconditioned.
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Well, these are practical recommendations that could be given,
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but often the neurologists are working in isolation from the rehabilitation field.
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Or in a certain country, maybe there are not many specialized rehabilitation
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workers like occupational therapists, psychologists, and even physical therapists
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experienced with the typically complaints or the struggles that people with MS are facing.
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So there, there's a bridge to be made between what we know medically and what
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we know that is working in the rehabilitation sector.
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Now, the other topic is aging. And I think that clearly at the conference,
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people are aware that biological aging or brain aging can already start at the age of 55, 60.
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But it has not been really addressed so far, how the immune system is reactive
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still at the age of 50. and older, but from a physical therapy side of view,
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also how is your performance.
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And we can do simple tests like getting out of a chair for 30 seconds,
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which is a very difficult movement.
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It requires a lot of coordination to get up from a chair, it requires muscle
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coordination, muscle strength, explosivity, and it's very sensitive to detect
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aging much faster than with classical methods of walking.
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You and I actually bumped into each other yesterday at a presentation by the
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International Progressive MS Alliance.
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Some people tend to believe that rehabilitation is reserved for someone with relapsing form of MS.
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Has rehab been shown to be effective for people living with progressive MS?
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That's a really good question that you're asking. We see in rehabilitation studies
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that also people with progressive type of MS can gain.
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We are knowing that intensive practice of upper limb movements or on-gate movements
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or balance movements is leading to a benefit.
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We also have to be honest, however, that if people have more difficulties to
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move, that maybe the magnitude of the benefits is not a miracle.
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So people will feel that they can move more automatic, but it does not mean
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that they would move normal again. However, it is worth doing that.
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And the next reason I want to give to the audience is that it's also trying
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to do things more automatic. I said that a couple of times.
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When we are moving, our brain can be very focused. There's one place in the
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brain that's giving comments to your nervous tracts, to the spinal cord,
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and then to your muscles.
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However, many people need a lot of attention to move. They need a lot of concentration
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to move. So it's really fatiguing as you're using a lot of different brain areas.
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Well, we know that if people are practicing, and maybe they are practicing dual
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tasking, like a combination of motor activities and cortical activities,
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that that actually is making new connections in the brain and making more and
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more the movement more automatic.
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So I also encourage people to
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practice, to practice maybe with motor cognitive tasks together and then,
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maybe the movement will not be faster, but the movement will be more automatic
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and easier and it will be less fatiguing to start an activity.
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Well, that makes a lot of sense. Let me ask you, while we're talking,
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What are you seeing on the horizon in MS rehabilitation that has you excited?
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Well, what gets exciting is that now rehabilitation is much more valued than it was before.
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And there are two elements. It's more valued at one hand side by the medical field,
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that you are recognizing that lifestyle and engaging in activities is important
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and also impacting somehow on the brain function or the cardiovascular function or mood and fatigue.
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And I think that we are ready in the future to combine lifestyle interventions
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with medical treatment and see if that combination can have,
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a different effect than just giving, indeed, the drugs without changing your
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lifestyle. So I think that's one thing.
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A second thing, I have been talking a lot more about exercise,
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which can be physical, cognitive, but we also have to look more to what is important
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for people. And then we are coming to the area of well-being.
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And rehabilitation by definition is trying to improve functioning daily life.
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And the community of researchers, also the medical community,
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is now getting interested like what is well-being and how do we measure that?
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What is the lived experience of person with MS? And can we try to find instruments
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like patient-reported measures, but maybe also other type of capacity test,
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or maybe using wearable smartphones to measure daily life activities.
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That we will be able to have much more attention and try to improve well-being
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as well besides only brain function by MRI or very simple test-like walking.
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Karen, you've been very patient. MS Toronto 2026 is the largest MS research
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conference in the world.
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As someone living with MS, I'm hoping you'll share your impression of the meeting.
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Well, I'd like to frame my question, or rather, I'd like to frame my answer
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by sharing that I was diagnosed with relapsing-remediating multiple sclerosis
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at the beginning of 2020.
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Keep in mind, that was weeks before the world was introduced to the global pandemic.
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It was very isolating, it was very lonely, and my connection to treatment,
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to research, and to community was being challenged.
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Thankfully, we came through that part, and I started to learn more about my
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disease and its progression.
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And I was first introduced to Ektrams online.
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I actually participated virtually and I am thrilled to be able to participate
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today in person, learning from these incredible, inspired researchers and understanding
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exactly where this is taking us.
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Because in reality, in my opinion, the most important part of me being here
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is the fact that I am here, that I'm able to participate and I'm able to take
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an active role in my health care.
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You know, some of the topics that were discussed at this meeting include CAR-T
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cell therapy, BTK inhibitors, myelin repair.
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What are your thoughts on these emerging treatments?
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Again, I have made a lot of connections in the MS community.
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And through those conversations, I've come to understand just how far research has taken us.
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When people were first diagnosed decades ago, treatments were not available.
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These conversations were not filling up the rooms. Our voices were not being heard.
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So in total, I just feel so inspired and so excited about what this could mean
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for my health care, what this could mean for my outcomes, and what this could
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mean for my quality of life.
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And to be hearing from different people about how I can take control of that.
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Because MS robs us of so much.
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So it's really nice to be reminded of what we can get back, what kind of control
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we have, and how we can contribute and make a difference, a meaningful difference.
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There were over 300 presentations at this meeting, over 1,800 posters presented
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at this meeting, a lot of research.
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Which presentations were most important or meaningful to you?
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The most meaningful presentations for me was Patient Community Day,
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where our voices and our faces were seen and heard, and how we could make a
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contribution to meaningful conversations and ask questions that are important to the MS community.
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I think that was the most thrilling moment of my life, to be able to stand and
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sit on that stage and ask questions from these great minds who are making a
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meaningful difference in my life.
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When you looked out from the stage and you saw we were in, I'll point out to
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our listeners, we were in a very large meeting room and it was full.
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How did that make you feel?
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Well, it made me feel a lot of different emotions, but I think I was hardened
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by feeling like I was cared for, that this mattered and this was important.
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I do live in Toronto, Toronto, Ontario, Canada, and we often mention that MS
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is known as Canada's disease. We have one of the highest rates in the world.
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So to have everybody descending upon Toronto and having these really important
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conversations was something that's going to keep me going and is going to inspire
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me to continue to do more and make a difference.
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Patient Community Day is a relatively new addition to this meeting.
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I think this was the fifth year in a row where Patient Community Day has been
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part of the proceedings.
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The day was important to you.
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Talk about its importance to the research community and the patient community as a whole.
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Well, I think it's really important for the research community because it's
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important to hear from the people and the lived experience, how it's affecting
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us, what questions we have.
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We know that MS manifests differently in each person, and you can only continue
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to gain knowledge and make decisions that can benefit us by learning from us
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and by sharing a room with us and bringing us to the table.
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Do we need to see more of that?
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Is that a question? Absolutely. And I think everyone who was in that room today would agree.
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I think you're absolutely right about that. You know, some of the themes that
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are emerging are things like aging and MS,
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women's health issues and reproduction as they relate to MS,
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and as Professor Feys said, brain health.
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So how do those particular themes resonate with you?
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It resonates with me greatly because of when I was diagnosed and where I find myself today.
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So again, I was diagnosed at the beginning of 2020. I would have been about
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33 years old at that age. I was looking forward and dreaming of building a family.
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Today, I'm getting ready to celebrate my 40th birthday this December.
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Having said that, I am speaking to you as an MS advocate, but I'm also speaking
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to you as a woman who is navigating fertility issues with her husband.
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They're unrelated, but it's all part of the conversation of women's health,
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how MS affects that, how we kind of work in tandem to help support my MS treatments
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and also understand what my goals are in terms of building the family I'm looking for.
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Since you mentioned family planning, have you talked with your neurologist about
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the medications you're on, the disease-modifying therapy you're on,
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and any other adjustments you may have to make in order to facilitate your plans?
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Absolutely. And I encourage everybody listening and anyone who is affected by
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MS and is just thinking maybe not about fertility, but just about what your
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long-term goals are in life and what kind of quality of life you would like to have,
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to have those discussions. It's important. They matter.
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Any differences in your MS, any ways that you could help support your decision-making
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when it comes to what you're trying to achieve is so, so important to work in
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tandem with your healthcare professionals.
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Was there anything that you felt was missing from this meeting that needs to
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be part of the meeting next year?
00:18:39.380 --> 00:18:43.070
I feel like in these meetings, we touched on some really important topics.
00:18:43.470 --> 00:18:47.310
I guess the only request I would have to have more of a fulsome conversation.
00:18:47.310 --> 00:18:51.240
I think there is so much we can speak to, and obviously we can't take up the
00:18:51.240 --> 00:18:56.730
entire day. But having those avenues to be able to continue the discussion is
00:18:56.730 --> 00:18:57.860
really, really important.
00:18:58.610 --> 00:19:03.530
Professor Peter Feys and Karen Jacoby, I want to thank you both for taking a
00:19:03.530 --> 00:19:05.190
little extra time to talk with us today.
00:19:06.300 --> 00:19:10.210
No, thank you. It was a pleasure to be here and to be confronted also with the
00:19:10.210 --> 00:19:14.110
questions from persons with multiple sclerosis, because indeed then you know
00:19:14.110 --> 00:19:18.150
what is important for them to hear, but also to drive the future agenda.
00:19:19.340 --> 00:19:23.910
Absolutely. And thank you so much for inviting me to speak. I'm happy that I
00:19:23.910 --> 00:19:25.520
could participate in this.
00:19:25.520 --> 00:19:30.980
And more importantly, I just want to speak to the future and protecting the
00:19:30.980 --> 00:19:35.460
future of the MS community. And can we start to reframe the conversation from
00:19:35.460 --> 00:19:39.620
not just what we are protecting, but what we are gaining back?
00:19:39.910 --> 00:19:43.610
What does it mean when we're listening to patients, we're making decisions about
00:19:43.610 --> 00:19:45.230
their treatments, healthcare?
00:19:45.850 --> 00:19:50.300
How can they start to restore and build the life that they are looking to live?
00:19:51.080 --> 00:19:55.600
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered
00:19:55.600 --> 00:19:57.310
by the National MS Society.
00:19:57.580 --> 00:20:01.500
And you can share this episode of the podcast by letting your friends or family
00:20:01.500 --> 00:20:09.010
members know that all they have to do is point their web browser at realtalkms.com slash 478.
00:20:09.570 --> 00:20:13.740
You'll find that link in today's show notes, so you can easily copy and paste
00:20:13.740 --> 00:20:16.270
it right into an email or a text.
00:20:16.980 --> 00:20:21.730
I also want to invite you to download the free Real Talk MS app for your iOS
00:20:21.730 --> 00:20:23.840
or Android smartphone or tablet.
00:20:24.300 --> 00:20:26.600
It's the best way for us to stay connected.
00:20:27.090 --> 00:20:30.940
The app will automatically download the latest episode of Real Talk MS.
00:20:31.320 --> 00:20:35.340
You'll be able to download and listen to past episodes. You'll be able to save
00:20:35.340 --> 00:20:36.650
your favorite episodes.
00:20:36.840 --> 00:20:41.560
And what I'm particularly excited about is that I'll be able to share all kinds
00:20:41.560 --> 00:20:46.450
of bonus content with you, and that content will only be available on the app.
00:20:47.010 --> 00:20:50.650
So I hope you'll take a minute to visit the Apple App Store or the Google Play
00:20:50.650 --> 00:20:53.630
Store and download the free Real Talk MS app.
00:20:53.910 --> 00:20:58.620
You'll find those links in today's show notes or at realtalkms.com.
00:20:59.400 --> 00:21:04.170
Patient Community Day may have been the final chapter of MS Toronto 2026,
00:21:04.530 --> 00:21:08.910
but this is only the first chapter of our coverage of the largest MS research
00:21:08.910 --> 00:21:10.010
conference in the world.
00:21:10.660 --> 00:21:14.850
This Thursday, be sure to catch our special episode when the Chief Research
00:21:14.850 --> 00:21:18.340
and Medical Affairs Officer at the National MS Society, Dr.
00:21:18.340 --> 00:21:23.680
Bruce Bebo, joins me to share the research and announcements that he found particularly
00:21:23.680 --> 00:21:26.860
important at MS Toronto 2026.
00:21:27.660 --> 00:21:34.400
I'm Jon Strum Thanks for listening Stay safe and make healthy choices
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