WEBVTT
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It's July 14th, and we have a lot to talk about.
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Depression stops people from engaging in life. It can stop them from showing
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up at work, meeting up with their friends, even staying connected to their family.
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One out of every two people living with MS will experience depression at some
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point in their MS journey, but there may be an effective treatment that doesn't
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require another infusion, another injection, or even another pill.
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Welcome to Real Talk MS. This week, I'll be joined by Dr.
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Robert Motl, the principal investigator in a study that's taking a novel approach
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to managing MS-related depression,
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and Kelly, who lives with progressive MS, participated in this study and realized
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her depression had vastly improved.
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But before we get to my conversation with Dr. Motl and Kelly,
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there are a few other things that you should know about.
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Last April, the MS community was excited to see Fernando Mendoza taken as the
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number one pick in the NFL draft.
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Fernando's mother, Elsa, lives with MS, and it was everyone's hope that Fernando
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would raise awareness of MS as he had been doing all throughout his college career.
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Well, that's how it started. Let me tell you how it's going.
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Last Thursday, Fernando and his family donated $500,000 to the University of
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Miami Miller School of Medicine to support MS research through the Mendoza Family Fund.
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This half-million-dollar donation will be used to help launch a first-of-its-kind
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MS stem cell transplantation trial this fall at the Miller School's MS Center of Excellence.
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Training camp hasn't even opened, and Fernando Mendoza is already walking his
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talk, demonstrating that he's a lot more than your average rookie.
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We'll look forward to hearing more from him as his NFL career kicks into gear.
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The good news is we have over 20 FDA-approved disease-modifying therapies to treat MS.
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But the not-so-great news is they all have the same limitations.
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You have to take these drugs for life, or at least most of your life.
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They offer incomplete protection against disability progression.
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And they struggle to hit the chronic inflammation deep inside the central nervous system.
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That's why the California Institute for Regenerative Medicine has just awarded
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a $7.49 million grant to Dr.
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Lily Yang and her research team at UCLA to further their development of a treatment
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for MS that flips a script.
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It's a universal, off-the-shelf, CAR-NKT cell therapy that fights MS on two fronts.
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So, let's break down what this is really all about.
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Traditional CAR-T therapies, which have done wonders in cancer research and
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are currently undergoing multiple clinical trials for MS,
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well, these therapies work by wiping out the bad B-cells that produce the antibodies
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that mistakenly attack myelin in an individual with MS.
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Dr. Yang's therapy does that too. It engineers cells with a chimeric antigen
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receptor to target a protein that lives on the surface of B cells called CD19.
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But here's why this therapy is a double threat.
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In MS, B cells aren't the only problem. There are also inflammatory myeloid
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cells that attack the damaged areas in the central nervous system and drive progression.
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Regular CAR T cells ignore these myeloid cells, but Dr.
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Yang's platform uses natural killer T cells, or NKT cells, and these cells have
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a natural receptor that detects and attacks those inflammatory myeloid cells.
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So you have one therapy that kills those misbehaving B cells and clears out
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the chronic inflammation that's causing the actual damage to the nervous system.
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And because these cells can survive in the body for months or even years,
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the goal isn't just to manage symptoms.
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The goal is to cause an immune system reset.
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And that reset could keep MS disease activity in the central nervous system on hold indefinitely.
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Now, if these benefits weren't enough, there's more. In traditional CAR-T cell
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therapies, scientists have to take a patient's individual cells,
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alter them in a lab for weeks, fly them back, and reintroduce them to the patient.
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It's an expensive process, making CAR-T cell therapy a very expensive treatment,
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costing hundreds of thousands of dollars.
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Now, NKT cells are naturally compatible with anyone's immune system.
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Dr. Yang's team can mass-produce them using donated cord blood stem cells,
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freeze them, and ship them out to treat any patient.
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And one single cord blood stem cell donation can create thousands of doses.
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They're estimating the cost could drop as low as $5,000 per dose.
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Compare that price to the cost of the disease-modifying therapy you're currently on.
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The research team has already seen very positive results of their CAR-NKT cell
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therapy in preclinical mouse models, where it actually prevented paralysis.
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They've already met with the FDA, and over this two-and-a-half-year grant period,
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their goal is to reach the point of human clinical trials with hundreds of doses ready to go.
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I try to avoid hyperbole, but this is what a cure could look like.
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And we'll keep you updated as Dr. Yang and her team continue their work.
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The good news isn't only coming from the West Coast. On the East Coast, Dr.
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Yao Ying Wu, an assistant professor of biomedical and chemical engineering at Syracuse University,
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has been awarded a National Institutes of Health, or NIH, grant to develop an
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innovative class of nanoparticle therapy to treat MS.
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Today's MS disease-modifying therapies broadly suppress your immune system to
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stop it from attacking your myelin.
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It works, but it creates a massive side effect, leaving you more vulnerable
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to everyday infections and other complications.
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But what if scientists could find a way to re-educate the immune system instead of just turning it off?
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That's exactly what Dr. Wu's project, officially titled Tolerogenic Dendritic
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Cell Membrane-Coded Nanoparticles for Precision Multiple Sclerosis Therapy, is designed to do.
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So let's take a minute to break down this project with the rather long and somewhat confusing name.
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In our bodies, we have a specialized class of immune cells called tolerogenic dendritic cells.
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Think of these cells as the peacekeeper in your immune system.
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Their natural job is to look at the body's own tissues and tell the rest of
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the immune system, well, this stuff belongs to us, so don't attack.
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In other words, they promote peace and tolerance.
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What Dr. Wu is doing is creating synthetic nanoparticles and then disguising
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them in the actual physical cell membranes harvested from these peacekeeping dendritic cells.
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Now, because the nanoparticles are wearing the native cell membrane like a coat,
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literally like a disguise, they carry all the same surface proteins and molecular keys.
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And when these disguised nanoparticles enter the body, they mimic the peacekeeper cells perfectly.
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They interact directly with rogue B-cells in the immune system and deliver a
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highly specific molecular message.
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They say myelin is a friend, not a foreign threat. Do not attack.
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That's what immunoengineers call a cell mimetic strategy.
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Instead of shutting down the whole immune system to protect your nervous system,
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you're target training the immune system to tolerate myelin again,
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leaving the rest of the body's natural defenses fully intact to fight off normal
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colds, viruses, and more serious infections.
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Dr. Wu has received an NIH R21 grant.
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Now, R21 grants are specifically designed for high-impact, exploratory novel research.
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It's the ultimate proof-of-concept funding.
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Dr. Wu and his team at Syracuse University's Bio-Inspired Institute are using
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this grant to build out the preliminary data required to take this to larger-scale
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manufacturing and eventually human clinical trials.
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This cutting-edge MS therapy represents a paradigm shift away from broad immunosuppression,
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toward total precision.
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We'll be tracking Dr. Wu's progress as he and his team create a new class of
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nanoparticle therapy for MS.
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Early treatment with a high-efficacy disease-modifying therapy is increasingly
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being recognized as an important step when it comes to improving long-term outcomes
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for people living with MS.
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But the astronomically high cost of these DMTs creates a serious barrier to
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access, not just here in the United States, but around the world.
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That could be changing. A major Scandinavian clinical trial called Overlord
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MS has provided the first high-level, randomized, double-blind proof
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that a low-cost, off-label therapy is just as effective as one of the leading
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high-cost standard disease-modifying therapies on the market.
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We're talking about rituximab versus ocrelizumab, or if you prefer to use their
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trade names, it's rituxan versus ocrebus.
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First, let me share some quick background. Both of these drugs are monoclonal
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antibodies that do the exact same basic job.
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They deplete B cells, which are the immune cells that are most responsible for
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driving the inflammation in relapsing MS.
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Ocrevus, of course, is FDA-approved specifically for MS, and it's been shown to be highly effective.
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Rituximab, on the other hand, is an older drug that was originally approved
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for lymphoma and rheumatoid arthritis.
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For years, neurologists in places like Sweden and Norway have been prescribing
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rituximab off-label for MS because it's so much cheaper.
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But there's never been a gold-standard, randomized, double-blind,
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head-to-head trial to definitively prove that rituximab works just as well as Ocrevus.
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That is, until now.
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The Overlord MS trial followed newly diagnosed relapsing MS patients across
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Norway and Sweden for 30 months using both clinical assessments and MRI. And the result?
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Total clinical equivalence. Rituximab showed comparable efficacy and safety to ocrelizumab.
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It protects the brain and stops
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relapses just as well, but at a tiny fraction of the cost of ocrevis.
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The Overlord MS trial proves that highly effective MS treatment can be delivered
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without compromising patient outcomes or breaking the bank.
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And there's another story to report here.
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Because both of these drugs wipe out B-cells, and because B-cells are the primary
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hiding place for Epstein-Barr virus, which we know is a major trigger for MS,
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The biomaterial collected from the Overlord MS trial is being funneled directly
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into the broader European EBV-MS research initiative.
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Scientists are using these exact same patient samples to map out how B-cell
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depletion alters the EBV-related immune mechanisms that drive MS.
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Well, this story represents a real victory for publicly funded,
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independent academic research.
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It proves that scientists can design a more sustainable, equitable path forward
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for the global MS community.
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And it gives doctors the hard evidence they need to advocate for affordable,
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early, high-efficacy treatment for everyone, no matter where they live or what
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their insurance looks like.
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If you'd like to review the details of the Overlord MS clinical trial,
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you'll find that Link in today's show notes.
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You know, today's episode has focused on evidence-based, cutting-edge biomedical breakthroughs.
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Well, I have one more breakthrough to share with you, but this one doesn't involve
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cell transplants. It doesn't even involve medicine.
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The Mood and Exercise Training Study for Multiple Sclerosis is designed to analyze
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the effects of two different remotely delivered and monitored exercise training programs
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for managing major depressive disorder among people with MS.
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Joining me today is the study's principal investigator, Dr. Robert Motl,
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along with Kelly, who is a participant in the study.
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In a moment, we'll meet my two guests.
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When we think about physical exercise, we often think of its physical benefits.
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But for someone living with MS, the benefits can go far beyond just feeling good physically.
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Depression affects one in every two people living with MS,
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and the Mood and Exercise Training Study for Multiple Sclerosis,
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or METS for MS, is designed to analyze the effects of two different remotely
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delivered and monitored exercise training programs
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for managing major depressive disorder among people with MS.
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Joining me to talk about Mets for MS is a good friend of the podcast and the
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study's principal investigator, Dr. Robert Motl, along with Kelly,
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who was a participant in the study.
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Dr. Motl is the director of the Exercise Neuroscience Research Laboratory at
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the College of Applied Health Sciences at the University of Illinois, Chicago.
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Kelly, Dr. Motl, welcome to the podcast.
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So glad to be here, Jon.
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Dr. Motl, we've long known that exercise is good for the body,
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but this research specifically targets mood.
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What was that aha moment or the specific data gap that led to the creation of
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the Mood and Exercise Training Study?
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That's a great question, Jon. There were really two things that motivated the METS for MS study.
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One of the observations was that there is a wealth of research showing that
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exercise can improve depressive symptomology in people with multiple sclerosis.
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Yet none of the studies that we reviewed specifically focused on people with
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MS who had major depressive disorder.
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So we don't actually know whether or not exercise would work in that population
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of individuals. And there's a lot of reasons to think it will,
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but there are also some reasons to think that it might not work.
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You know, when we look at medications, when we look at talk therapy,
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those seem to not work quite as well in people with MS who have major depressive
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disorder as they do in the general population.
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Then at the same time, we were looking at the research in the general population.
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And when you look at the general population of the United States,
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there's a lot of studies that have examined different therapeutic modalities
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for treating major depressive disorder.
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And there was this really large meta-analysis and systematic review of all the
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therapeutic interventions for managing major depressive disorder.
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And of all the interventions, exercise came out on top for treating depression
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in people with major depressive disorder.
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So when we saw these two really important things in the literature,
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me and my colleagues, we pulled them together and wrote this grant to the Multiple
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Sclerosis Research Program that's now back and with us.
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And we were fortunate enough to receive the funding and be able to do this critically
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important trial for people living with multiple sclerosis and major depressive disorder.
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Well, let's drill down a little bit. Can you walk us through the type and intensity
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of exercise that was used in the study?
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Yeah, so just to be clear, the study is still ongoing, so we're not done yet.
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And we have two different exercise programs and I'll explain both of them.
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One of the exercise programs is what people will typically think about with exercise.
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We have individuals engaging in aerobic exercise, and we have them also engaging
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in resistance exercise.
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So the aerobic exercise, we have them doing walking, and they do walking three days per week.
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They start really low at 10 minutes on each session, and then they ramp up to
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about 30 minutes of walking on each session, and that occurs over a 16-week period of time.
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The intensity is structured based on the rate at which they take steps.
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So we want them to walk at about 100 steps per minute because that's the threshold
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for moderate intensity.
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Then on the other, with that, we also do resistance training.
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So we give them resistance bands.
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And again, we start them with the lowest amount of resistance.
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And we start them with five exercises that target the upper extremity,
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the core, and the lower extremities.
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And then over time, we increase the number of exercises and we increase the
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resistance by the bands such that they do 10 resistance exercises or target 10 different areas.
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And they're using a much heavier resistance to where when they're done,
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they're kind of getting to the point of they can't do more repetitions.
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So that's one of the exercise approaches.
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The other exercise approach that we've learned that a lot of people with MS
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like is stretching to improve range of motion and flexibility.
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And a lot of people tell us that they have a lot of stiffness.
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It impacts their ability to do everyday life tasks.
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And it's really something that they struggle with.
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And so this other program is very, very specifically developed based on guidelines
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that the National Multiple Sclerosis Society put together.
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And we give people a simple set of exercises to start with.
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And we start with a small amount of time on those exercises and then we build
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we give them more exercises and give them more options
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and and allow them to choose more
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exercises more duration of each of those exercises like holding a stretch
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and doing more sets of those exercises
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So we're trying to compare whether or not these two different forms of exercise
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have similar benefits on major depressive disorder, or maybe there might be
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one program that works a little bit better than the other.
00:19:50.310 --> 00:19:52.730
We don't know, and we're hoping to find that out.
00:19:53.470 --> 00:19:59.550
Are you finding that there's a specific dose of activity that seems to trigger
00:19:59.550 --> 00:20:02.260
a positive change in mood for someone with MS?
00:20:02.950 --> 00:20:09.840
So, in both of these programs, we try to get people to what we would consider
00:20:09.840 --> 00:20:14.600
to be the clinically effective dose of exercise.
00:20:15.130 --> 00:20:22.930
For the traditional exercise program, that means 30 minutes of walking and doing
00:20:24.450 --> 00:20:28.420
two sets of 10 repetitions of 10 different muscles.
00:20:29.250 --> 00:20:33.570
And we try to get people there by about halfway through the 16-week program.
00:20:34.260 --> 00:20:38.150
In the stretching where we're trying to promote flexibility and range of motion,
00:20:38.620 --> 00:20:44.640
again, we believe that the proper amount of exercise is about 10 different muscle groups
00:20:45.410 --> 00:20:53.160
and doing two different kind of stretches of those muscle groups lasting for about 30 to 60 seconds.
00:20:53.660 --> 00:20:59.200
And that seems to help with range of motion and flexibility that would have
00:20:59.200 --> 00:21:01.850
the benefits that we would hope that they would experience.
00:21:02.180 --> 00:21:06.010
But again, we don't know the right dose yet because we're not quite done with the study.
00:21:06.840 --> 00:21:11.520
From a physiological standpoint, do you know what might be happening in the
00:21:11.520 --> 00:21:15.280
brain of an MS patient when they engage in this specific training?
00:21:15.660 --> 00:21:20.440
And how is it counteracting the biological basis of MS-related depression?
00:21:21.190 --> 00:21:27.050
Yeah. So if we think about some of the root causes of depression and MS and
00:21:27.050 --> 00:21:30.350
overall, you know, there could be a biological basis of it.
00:21:30.350 --> 00:21:34.170
So dysregulation of neurotransmitter systems like serotonin,
00:21:34.500 --> 00:21:37.050
norepinephrine, or there might be
00:21:38.830 --> 00:21:43.050
the kind of lack of confidence, lack of self-esteem, things like that,
00:21:43.050 --> 00:21:48.600
that come from living with a chronic, debilitating disease that's really hard to manage.
00:21:50.100 --> 00:21:56.790
When we look at the literature, there actually are some data that exercise works
00:21:56.790 --> 00:22:03.050
in people with major depressive disorder by changing around neurotransmitter systems and levels
00:22:05.000 --> 00:22:07.230
That have to do with serotonin and norepinephrine.
00:22:07.230 --> 00:22:12.590
In fact, there's a very classic study comparing exercise versus an SSRI,
00:22:12.590 --> 00:22:17.570
a serotonin selective reuptake inhibitor and the two combined and showing that
00:22:17.570 --> 00:22:21.540
they all have similar effects, suggesting the exercise is working on that neurotransmitter system.
00:22:22.310 --> 00:22:28.520
On the other hand, we know that exercise is a great stimulus for helping people
00:22:28.520 --> 00:22:35.130
to physically feel better about themselves, to evaluate themselves more positively.
00:22:35.610 --> 00:22:39.210
And that translates into an overall more positive evaluation.
00:22:39.210 --> 00:22:40.730
We call that self-esteem.
00:22:41.330 --> 00:22:46.960
And self-esteem is a major contributor to managing depression and preventing
00:22:46.960 --> 00:22:50.560
depression in society and people with multiple sclerosis.
00:22:50.900 --> 00:22:52.860
So it could be biological.
00:22:53.440 --> 00:22:55.520
It could be psychological.
00:22:56.250 --> 00:22:58.570
It could be both operating at the same time.
00:22:59.290 --> 00:23:04.800
Many people with MS deal with profound fatigue or mobility issues that make
00:23:04.800 --> 00:23:08.420
the idea of physical exercise seem like it's out of reach.
00:23:09.070 --> 00:23:13.340
How does the METS-MS study account for these very common symptoms?
00:23:14.060 --> 00:23:18.660
Yeah, we hear that a lot when we ask people to start an exercise program.
00:23:19.070 --> 00:23:22.450
That is, is this going to make my fatigue worse? And if it makes my fatigue
00:23:22.450 --> 00:23:27.600
worse, that's going to make everything I do worse and ultimately make my depression
00:23:27.600 --> 00:23:30.490
worse, I think, is a reasonable extension.
00:23:30.920 --> 00:23:37.000
So we start everything with a very, very low amount of exercise.
00:23:37.300 --> 00:23:42.780
We start it with, you know, something that's akin to about 10 minutes of exercise,
00:23:43.470 --> 00:23:45.330
you know, three days per week.
00:23:46.000 --> 00:23:49.760
And we start low because we want to see how people respond to that.
00:23:50.440 --> 00:23:54.100
Some people, that's the perfect amount, right? And we're just going to start
00:23:54.100 --> 00:23:56.500
them there and slowly build them up.
00:23:57.200 --> 00:24:00.910
Some people will tell you after the first two weeks of doing 10 minutes,
00:24:01.160 --> 00:24:04.440
three times per week, that this is not enough. It's not pushing me.
00:24:04.680 --> 00:24:05.920
And we build them faster.
00:24:06.390 --> 00:24:09.880
And some people will tell us like, wow, you're really pushing me,
00:24:10.100 --> 00:24:14.350
you know, to the limits here. And we give them a slower build over time.
00:24:14.860 --> 00:24:18.830
So we do that because we don't want to
00:24:20.220 --> 00:24:25.950
Drain someone's physical and mental reserves and ultimately cause them to have
00:24:25.950 --> 00:24:32.100
more fatigue, and that translate into more problems in everyday life.
00:24:32.770 --> 00:24:36.700
I will say that one of the things that we're looking at in this study,
00:24:37.200 --> 00:24:42.340
because we are measuring fatigue as a secondary outcome, we're trying to examine
00:24:42.340 --> 00:24:48.270
whether or not, you know, if we improve depression, do we also get improvements in fatigue?
00:24:48.620 --> 00:24:54.150
And kind of maybe can we discern which which is the chicken and which is the
00:24:54.150 --> 00:24:57.020
egg in the outcomes of this trial.
00:24:57.720 --> 00:25:03.400
Kelly, I want to thank you for being patient. Now I have some questions for you.
00:25:03.730 --> 00:25:08.730
Before you join Dr. Motl's study, how would you describe your general mood?
00:25:09.290 --> 00:25:12.180
And how would you describe your relationship with exercise?
00:25:12.870 --> 00:25:21.830
So my general mood, I would say pretty positive overall, but definitely doubting
00:25:21.830 --> 00:25:26.480
myself and my ability as I've progressed in my disease.
00:25:28.080 --> 00:25:36.220
I've definitely, my struggles have become more apparent. And so my self-esteem is fairly low.
00:25:37.660 --> 00:25:47.710
As far as my depression, I don't know that I ever saw my lower self-esteem as part of the depression.
00:25:49.040 --> 00:25:53.570
After the study, I definitely see the correlation.
00:25:53.970 --> 00:26:00.990
So that would be my effect as far as mentally. As far as physically,
00:26:01.760 --> 00:26:06.410
fatigue definitely has always been an issue for me since diagnosis.
00:26:07.110 --> 00:26:12.000
So it was hit or miss on exercise. If I was feeling really good,
00:26:12.000 --> 00:26:16.440
then I was really optimistic about what I could do and what I could achieve that day.
00:26:17.470 --> 00:26:23.160
If I was feeling woke up particularly fatigued, that wasn't even on my radar that day.
00:26:23.560 --> 00:26:26.700
So there was no structure, to put it that way.
00:26:27.610 --> 00:26:33.890
No real structure, no organizing my day around it to see how that affected the
00:26:33.890 --> 00:26:36.460
rest of my day by doing it daily.
00:26:36.920 --> 00:26:40.140
So that was definitely kind of where I was going in.
00:26:40.480 --> 00:26:45.200
As you went through the training, was there a specific week or a particular
00:26:45.200 --> 00:26:50.750
moment during the training when you realized, hey, my mood feels different.
00:26:50.920 --> 00:26:53.200
I'm feeling a little better about things.
00:26:53.950 --> 00:27:01.020
Yes, definitely. I was at about week one, maybe 10 days in.
00:27:01.580 --> 00:27:08.080
And what I realized when I was doing the stretches on that day,
00:27:09.160 --> 00:27:12.110
every day prior, it was kind of just like a job.
00:27:12.110 --> 00:27:17.040
You know, I was going to do it. And whatever the effect was from doing it, great.
00:27:17.340 --> 00:27:20.830
You know, if it was positive, I felt better, great. If I didn't, okay.
00:27:21.730 --> 00:27:30.290
On like about the 10th day I realized I was actually excited like I got up a
00:27:30.290 --> 00:27:35.090
little bit earlier I had breakfast you know and I was
00:27:36.260 --> 00:27:39.910
I was treating it like a job that I loved on that day.
00:27:40.440 --> 00:27:45.910
And that was the difference for me. That was where it kind of turned from I'm
00:27:45.910 --> 00:27:51.630
participating in this study just to see, to me actually seeing the difference.
00:27:52.340 --> 00:27:57.540
So did you notice that change carry over into your daily life,
00:27:57.540 --> 00:28:02.800
either, I don't know, in relationships, your work, or even just your overall outlook?
00:28:03.370 --> 00:28:11.320
Yes, I actually did. So, you know, part of, um, I don't work an outside job,
00:28:11.320 --> 00:28:13.190
so I've been on a disability.
00:28:13.190 --> 00:28:17.080
So my days are, they tend to be a little bit mundane. You know,
00:28:17.080 --> 00:28:21.390
a Tuesday is like a Friday and it's not much difference for me.
00:28:22.120 --> 00:28:27.290
I was noticing that once that change kind of happened, I was,
00:28:28.220 --> 00:28:35.170
I was eager to shower, to get dressed, to figure out something to do.
00:28:35.630 --> 00:28:39.110
I was painting more than I was prior.
00:28:40.450 --> 00:28:45.740
I was definitely more engaged in every activity for the rest of the day.
00:28:46.400 --> 00:28:52.040
And it was, I felt more accomplished. And I haven't felt that.
00:28:52.670 --> 00:28:58.150
You know, when you don't work a actual nine to five job and things like that,
00:28:58.770 --> 00:29:03.130
you struggle to find ways to feel that you're contributing.
00:29:03.780 --> 00:29:06.090
And I think that that was my big...
00:29:08.420 --> 00:29:15.160
Big depressive element for me is that I didn't feel part of the human race.
00:29:15.780 --> 00:29:19.350
I didn't feel part of that rat race. Everyone's trying to get out of it when
00:29:19.350 --> 00:29:22.730
they're in it, but I was aching to get back in.
00:29:22.730 --> 00:29:28.280
And this gave me a little bit where I could find my new purpose and I could
00:29:28.280 --> 00:29:35.820
find things in my day that made me feel complete.
00:29:35.930 --> 00:29:42.840
It made me feel less disabled, less dependent, and more independent.
00:29:43.280 --> 00:29:48.250
That's amazing. For someone who is listening to our conversation right now,
00:29:48.250 --> 00:29:54.670
maybe they're feeling stuck in MS-related low mood, physical inactivity.
00:29:54.950 --> 00:30:00.250
What's the one thing you wish someone had told you before you started this training?
00:30:01.010 --> 00:30:07.090
I wish that someone told me that it doesn't have to look the same for everyone.
00:30:07.950 --> 00:30:13.920
I'm very spastic, you know, I'm very spastic on my right side and I'm not going
00:30:13.920 --> 00:30:20.630
to be able to complete these stretches the same way that the next person will, but it doesn't matter.
00:30:21.950 --> 00:30:27.770
I'm not competing against other people i'm just doing things
00:30:28.180 --> 00:30:33.620
that are really good and beneficial for me and i think i saw it as well but
00:30:33.620 --> 00:30:38.240
i can't do the exercise like this person can so why bother right
00:30:39.360 --> 00:30:42.550
i'm gonna fail but it's not about that
00:30:43.810 --> 00:30:47.910
you know it's about it's about doing it for you And it may look different.
00:30:47.910 --> 00:30:51.640
You know, I walk different than other people. That doesn't mean I shouldn't walk.
00:30:52.320 --> 00:30:56.220
You know, I eat different than other people. It doesn't mean I shouldn't eat.
00:30:57.090 --> 00:31:02.390
I exercise and stretch differently, but okay. And that's fine.
00:31:02.390 --> 00:31:04.560
And however that looked for me was okay.
00:31:05.900 --> 00:31:10.320
And I didn't know that. I didn't give myself permission to feel that prior.
00:31:11.150 --> 00:31:16.330
Dr. Motl, have you had an opportunity to observe how participants maintain
00:31:16.330 --> 00:31:19.620
these habits after they finish their part of the study?
00:31:20.430 --> 00:31:25.690
So we are following people up for a four-month period of time after the program ends.
00:31:26.390 --> 00:31:31.250
And our hope is that we've delivered the goods.
00:31:31.250 --> 00:31:35.370
We've given them a great program, like Kelly has talked about,
00:31:35.370 --> 00:31:40.420
has meaningful changes for them, but we've also given them tools and resources
00:31:40.420 --> 00:31:44.260
that they can keep this program in place, maintain the behavior,
00:31:44.580 --> 00:31:46.010
and maintain the benefits.
00:31:46.010 --> 00:31:49.730
And we're going to study them for four months after the program is over.
00:31:51.050 --> 00:31:57.400
I do want to make a comment that falls into what Kelly was saying.
00:31:57.930 --> 00:32:03.650
You know, our coaches who deliver this program always work with our participants
00:32:03.650 --> 00:32:08.900
where they are. We meet them where they need to be met. We listen to them.
00:32:09.390 --> 00:32:15.340
We pay attention to them. We try to understand what they need and how things will work for them.
00:32:16.770 --> 00:32:18.350
We try to make sure we're not
00:32:19.410 --> 00:32:23.180
using a one size fits all approach to everybody.
00:32:23.510 --> 00:32:27.410
Because as Kelly said, you know, she had very specific needs.
00:32:27.410 --> 00:32:32.540
She had very specific ways of doing the exercises, very specific ways of when
00:32:32.540 --> 00:32:35.290
she would do them and how they made her feel.
00:32:35.710 --> 00:32:41.030
And meeting her where she was, was key for her to be able to do this,
00:32:41.030 --> 00:32:42.970
make the change and stick with it.
00:32:43.170 --> 00:32:45.070
And that's key for everybody to learn.
00:32:45.650 --> 00:32:51.710
So the big question, how do we move this from a clinical study to a lifetime standard of care?
00:32:52.240 --> 00:32:55.630
Great question. And first, we need the data, right?
00:32:56.440 --> 00:33:01.990
You know, nothing moves into clinical practice and daily care until you have
00:33:01.990 --> 00:33:06.790
the data to move it there. So this trial is going to be fundamental for having
00:33:06.790 --> 00:33:07.980
good, high-quality data.
00:33:09.250 --> 00:33:13.250
Once we get it there, you know, neurologists, healthcare providers,
00:33:14.250 --> 00:33:18.610
they're always itching to recommend exercise.
00:33:19.300 --> 00:33:22.930
And they'll generally say stuff like exercise will just be good for you.
00:33:22.930 --> 00:33:28.400
It'll be helpful for you because we don't have the data to be able to say exercise
00:33:28.400 --> 00:33:30.000
will help you manage your mood
00:33:30.000 --> 00:33:34.080
and you need that because we think you have major depressive disorder.
00:33:34.720 --> 00:33:39.870
So once we get the evidence, I think it will help healthcare providers to be
00:33:39.870 --> 00:33:41.980
able to make that recommendation.
00:33:42.860 --> 00:33:46.550
And the whole thing with METS is METS is a home-based program.
00:33:46.550 --> 00:33:50.430
People don't have to go to a gym for completing the METS program.
00:33:50.840 --> 00:33:56.340
They can do it in the comfort and safety of their everyday home environment.
00:33:56.900 --> 00:34:01.560
I guess I have one more question. Are you still recruiting participants for this study?
00:34:02.280 --> 00:34:07.970
We are still recruiting participants for this study. We are hoping to recruit
00:34:07.970 --> 00:34:14.960
about 20 to 25 more people so that we reach our sample size estimates that we
00:34:14.960 --> 00:34:17.050
provided when we wrote the grant.
00:34:17.450 --> 00:34:22.720
And then we have full statistical power to be able to determine that these treatments
00:34:22.720 --> 00:34:27.400
are both working and to be able to be clear on whether or not one treatment
00:34:27.400 --> 00:34:29.220
is superior to the other.
00:34:29.790 --> 00:34:31.580
And how does someone get involved?
00:34:32.060 --> 00:34:36.950
There are two ways of contacting our team. One, you can send us an email,
00:34:37.510 --> 00:34:41.110
and the email would go to metsforms
00:34:44.380 --> 00:34:49.960
at uic.edu. That's metsforms at uic.edu.
00:34:50.580 --> 00:34:57.620
Or you could contact Ariel. Her number is 312-355-1790.
00:34:59.460 --> 00:35:02.680
And we will get back to you next day.
00:35:03.290 --> 00:35:08.340
We'll make sure that information is on the show notes for this episode as well
00:35:08.340 --> 00:35:10.060
to make it easy for people to find.
00:35:10.650 --> 00:35:15.300
Dr. Robert Motl, Kelly, I want to thank you both for contributing to our understanding
00:35:15.300 --> 00:35:20.140
of the value and importance of exercise in mitigating MS-related depression
00:35:20.430 --> 00:35:24.940
and delivering real, measurable benefits to people living with MS.
00:35:25.510 --> 00:35:27.370
And thanks so much for talking with me today.
00:35:27.770 --> 00:35:28.700
Thank you.
00:35:29.340 --> 00:35:33.610
Thank you, Jon, and we're so grateful to have Kelly with us today. She's a rock star.
00:35:33.900 --> 00:35:34.900
Thank you, guys.
00:35:36.140 --> 00:35:40.790
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered
00:35:40.790 --> 00:35:42.450
by the National MS Society,
00:35:42.850 --> 00:35:46.890
and you can share this episode of the podcast by letting your friends or family
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members know that all they have to do is point their web browser at realtalkms.com slash,
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00:35:55.290 --> 00:35:59.420
You'll find that link in today's show notes, so you can easily copy and paste
00:35:59.420 --> 00:36:01.950
it right into an email or a text.
00:36:02.860 --> 00:36:07.500
Liat Shalom was diagnosed with MS in 2021 at the age of 30.
00:36:08.230 --> 00:36:13.070
Rather than letting her diagnosis define her, Liat picked up her pen and began
00:36:13.070 --> 00:36:17.660
documenting her journey in a graphic memoir titled Unraveled.
00:36:18.460 --> 00:36:22.040
I hope you'll join me next week when we'll meet this self-described,
00:36:22.280 --> 00:36:27.450
award-winning graphic novelist, MS advocate, and professional smartass.
00:36:28.200 --> 00:36:34.830
I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.
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