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- [00:01]
A
I'm john strum, and this is real talk, mississippi. It's June 23rd, and we have a lot to talk about. If you've been listening to this show for a while, you know we spend a lot of time diving deep into the science of multiple sclerosis, the therapies, the clinical trials, and the biology. But today, we're shifting our focus from the lab to the open road because next week, two men, Matt Naggs and Colin Goodman, are setting out to do something most people would consider completely wild. Whether they have a chronic illness or not. They're attempting to set a Guinness World record by running the entire length of Ireland. That's 350 miles, which works out to somewhere between 30 to 35 miles a day, back to back for up to 12 days straight. Oh, and these two men, they're going to do that while they're living with Ms. Here's another fun fact about each of them. Matt lives in Ohio, and Colin lives in Belfast. Until they connected to do this run, they had never actually seen each other in person. They. They were connected thousands of miles apart through an online community that Matt founded called Running with Ms. As they started talking, they realized they shared a lot of similarities. They were born in the same month of the same year. They both have three kids. They're on the exact same Ms. Treatment, and they share a fierce commitment to focusing on what they can do rather than what Ms. Tries to take away. For Colin, this run is about unfinished business. He attempted it once before and his body just wouldn't let him finish. This time, he's back with his brother Andrew by his side for support. And he's got Matt flying across the Atlantic Ocean to join him. They're raising awareness, they're raising money for Ms. Organizations on both sides of the Atlantic. And I think you'll find their energy is absolutely infectious. My conversation with Matt and Colin isn't just about elite athleticism or the grueling miles they're about to encounter. It's about mindset. It's about how movement becomes therapy, how community transforms a diagnosis, and what it really means to stare down a chronic progressive disease and say, not today. But before we get to my conversation with Matt Naggs and Colin Goodman, there are a few other things that you should know about. If you've ever been in a doctor's office and received life changing news, you know that the exact moment that diagnosis hits, your brain kind of freezes. You hear the name of the condition and suddenly the world goes quiet. Your heart starts racing and whatever the Doctor says next is just white noise. Well, a new study published in Neurology and Therapy looked at exactly what happens to people when they're diagnosed with ms, specifically, what they need to hear versus what they actually receive. And the findings highlight a gap in how we talk about Ms. From day one. In this study, a multinational team of researchers ran two online surveys. They wanted to know two things. What are the patient's communication needs around the time of their diagnosis? And how empowered do patients feel later on when they're trying to explain their symptoms. The data revealed something pretty unsettling, but pretty important. When people are diagnosed, they're often flooded with information about ms, the biology of the disease, available drug treatments. But they're left completely stranded on the basic logistics of how to live their life with Ms. For example, the researchers found that even in clinics where the patients have a comprehensive care team, the specific roles of each healthcare professional. Like who to call for what? Well, that's never clearly explained. Even worse, many patients walk out of the clinic without clear guidance on what to do if they experience a relapse. They don't know who to approach for advice when their health status changes. And here's why that matters. Ms. Is incredibly unpredictable. It has what doctors call a heterogeneous trajectory, which is a way of saying it looks completely different on each person. With ms, some symptoms are visible, like mobility issues, but a lot of Ms. Symptoms are totally invisible, like chronic fatigue, brain fog, or numbness. Because patients feel so overwhelmed at the start, handing them a pamphlet doesn't really work. This study pointed out that newly diagnosed patients don't only need data, they need sustained support. They need to know exactly who to call when they wake up and can't feel their left foot, or they have double vision with a constantly jiggling horizon, or they can't even get out of bed and stand up. Right now, the answer is social media. That's where 76% of the survey respondents turn to when they have questions about their Ms. And frankly, that is a scary thought. Now, understand, social media can be a wonderful tool, but when I see the questions that get answered in so many Ms. Groups on social media, I have to admit I worry some answers are just completely wrong, factually incorrect. Other answers aren't necessarily wrong, but they're not going to be helpful. For instance, someone poses a simple question, and this kind of question gets posed multiple times every day. My doctor has prescribed. Well, here you can fill in the blank. Let's just say it's qysimta. So the question is my doctor has prescribed qysimta, who's taken it and what has been your experience? Now, everyone is an expert in their ms, but their Ms. Could be quite different from your Ms. And their experience with any disease modifying therapy could be quite different from what your experience might be. So the answer to this simple question just isn't going to help anyone determine whether key symptom might be right key for them. So how can we do better? What's the fix? The study outlines a few major recommendations that actually should be the gold standard for Ms. Or any major diagnosis. First, doctors need to explicitly map out the roles of the care team. They need to say, call Nurse Nancy if your symptoms change or submit a question in the patient portal. If you're wondering about a medication, it needs to be that specific. Second, patients need to be given a clear action plan. They need to know the steps to take when their symptoms worsen for more than 24 hours. Do they call their neurologist's office? Do they go to the emergency room? This question gets asked on social media all the time. Third, clinicians need to immediately point patients toward reliable online resources and Ms. Specific peer groups. Now, I've heard the argument against support groups. Newly diagnosed patients typically get scared off when they visit a support group that may have several members who've been living with more progressive disease. Well, that's why they need to be directed to support groups that are more focused on people who have been newly diagnosed. The data shows that patients who joined a support group early on had significantly better psychological outcomes and felt way more empowered to advocate for themselves. You know, at the end of the day, medicine can't just be about fixing the biology. It has to guide a person through whatever biology driven changes they might be experiencing. If you or a loved one are living with Ms. Or managing another chronic condition, don't be afraid to demand this kind of a roadmap from your care team. If you'd like to review the details of this study, you'll find that link in today's show. Notes. Recent data shows that the number of people living with MS, what doctors call the prevalence of MS, has been climbing steadily over the last 20 years. In fact, it's increasing by nearly 3% every single year. Now, hearing that, your first instinct might be to worry. Is something in our environment changing? Are more people suddenly getting sick? Well, a new study just published in the journal Neurology took a deep dive into the Ms. Prevalence numbers out of France and Sweden, and they uncovered a fascinating plot twist. The reason the numbers are Going up isn't because more people are getting diagnosed with Ms. It's because people living with Ms. Are living significantly longer. So this spike in numbers isn't a sign of a growing epidemic. It's actually a major victory for modern medicine. So let's break down how this works, because the math is actually reassuring. The researchers looked at decades of nationwide health registries. In France, a number of people living with Ms. Jumped from about 94,000 in 2011 to over 130,000 in 2022. Sweden saw a similar leap in the number of people living with Ms. But when the research team looked at incidence, which is the rate of new diagnoses per year, well, that number didn't go up, it actually went down. In France, new cases dropped from 8.2 cases of Ms. Per 100,000 people to 7.2. Sweden saw a similar decline. So fewer people are getting diagnosed year over year. Yet the total population of people living with Ms. Is growing. How can that be? Well, life expectancy. The study found that for someone diagnosed with ms, their life expectancy has been expanding by about two and a half months every single year. That's actually outpacing the increase in life expectancy we see in the general public. So what's changing? Why are people with Ms. Living so much longer today than they were just 20 years ago? It comes down to two major better clinical management and highly effective disease modifying therapies. Over the last two decades, the treatments available for Ms. Have changed. We went from having very few options to having highly sophisticated therapies that have been shown to slow down the progression of the disease, protect the nervous system and prevent severe disability. What makes this study even more interesting is that the researchers tracked other neurological conditions like ALS and Parkinson's, and they didn't see the same kind of extended survival trend for diseases like als. The rising numbers are mostly due to population growing older. But for ms, it's a direct reflection of medical progress. The story behind the numbers in this study serves as a powerful reminder that headlines can require nuance. Sometimes a rise in a disease's numbers doesn't mean doctors are losing the battle. It means they're finally winning it, giving people decades more time with their families, their careers and their lives. And by the way, if you know someone who's living with Ms. And they aren't on a disease modifying therapy, you might want to share this study with them. And you can find a link to the study in today's show. Notes. Some of our most listened to episodes are the episodes we record from Ms. Research conferences, and I think that's completely understandable. Those conferences are often the first places that the very latest cutting edge research is shared. They represent the milestones of progress that take us another step closer to better treatments and cures for Ms. The largest Ms. Research conference in the world is the annual meeting of the European Committee for Treatment and Research in ms, better known as the Ektrems Congress. This year the Ektroms Congress is taking place in Toronto, Canada from October 21st through the 23rd and on October 23rd from 3 to 6pm Eastern Time, you can participate in the 2026 ectrims Patient Community Day. This is a live, in person and online event that's designed to share the latest Ms. Research that was presented at the ECTRIMS meeting in easy to understand language. You'll be able to have your questions answered by some of the leading Ms. Experts in the world and you'll also hear patient perspectives. I hope you'll take a moment and register today for what I know is going to be an amazing program focused entirely on breaking down the cutting edge research presented at the Ektroms Congress so that people affected by Ms. Can see what the near term future holds. You can register at ektramspatientcommunity EU and you'll find that link in today's Show Notes. We can't get better treatments, nor can we get closer to cures without research, and scientists can't move research forward without you. Ultimately, it's your participation in Ms. Research that moves the ball down the field. So I want to tell you about an opportunity for you to participate in research by taking just a few minutes to complete an online survey from the comfort of your own home. Researchers at Purdue University are interested in better understanding the association that certain behaviors and attitudes have with physical activity, as well as how fatigue can impact those associations. And you can help the research team by completing an online survey that should take you about 15 minutes, and then four weeks later completing one more survey that will only take about five minutes. That's it. Just 20 minutes of your time to make a difference. So if you're 18 years old or older, have a confirmed Ms. Diagnosis, have no severe mobility impairments, are able to read and understand English, and live in the United States, I hope you'll step up and participate in this work. If you'd like to learn more about the study or register to participate, you'll find that link in today's Show Notes. And while you're completing that online survey from the comfort of your home, I hope you'll Consider that my guests today are about to experience anything but the comfort of home. Matt Naggs and Colin Goodman are out to set a Guinness World record for running the 350 mile length of Ireland with Ms. In a moment, you'll meet Matt and Colin. This summer, Matt Naggs and Colin Goodman are preparing to run the length of Ireland. That's 350 miles from the southernmost tip to the northernmost point. And the goal is to set a Guinness World record for the fastest crossing of Ireland on foot by a teen living with multiple sclerosis. Matt, Colin, welcome to the podcast.
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B
Hey, how are you?
- [16:20]
C
Hey, John. Really excited to be here.
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A
Well, I'm glad you both are. And Colin, I'll start with you since you of the two, you're local. Crossing the length of Ireland takes you through quite a diverse terrain. You'll be going from the hills of Cork to the flatlands of the Midlands and the mountains of Donegal. Now, I'm assuming you've mapped all this out, but what do you anticipate being the most make or break section of the route?
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B
Well, I suppose if I jump back the make or break section, for me, I'm looking forward. There's a place in Ireland called Limerick, and last time I tried this, John, I didn't even get the Limerick. So when me and Matt run the Limerick and hit Limerick after that, I don't know what's going to come next. So I have been looking at this route for the past. What would you say since, at least since Christmas, I've put on Google Maps, I've done the street views and there's nothing, there's nothing that really gives you the ess of actually being on the route, which I think, I think this will be interesting for Matt because Matt's used to running on different roads. Our roads over here are smaller, they're windier. But John, I've got a big flag in the back to keep us safe. So I would say the hardest bit about the route is we might hit some very windy, dangerous roads, I would say.
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A
Matt, I know the Guinness Book of World Records requires meticulous documentation from anyone who's trying to set a record or establish a new category. What are the specific rules you have to follow to ensure that Guinness accepts your record?
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C
So they, they do definitely have really strict requirements down to the type of GPS files that we must share in order to show that we've actually done what we said we would do. On top of that, we have to get witness statements from all across Ireland, anywhere that we are on our run. We also, Colin and I both have to provide documentation from our neurology teams that validate that we truly have Ms. Because the Guinness World Record is the fastest crossing of Ireland on foot by a team with Ms. So we have to prove that we have Ms. As part of this. And then we also have maybe our most important record keeper, I'll say, which is Colin's brother Andrew who's going to join us. And we have dubbed him our finish get our official Guinness World Record documentation guy. Very official title.
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A
Well you know that actually brings me to the very next question I was about to ask Colin. A 350 mile run isn't just about the runners. What kind of a crew do you have?
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B
So John, the running scene. I love the running scene and I love the ultra running scene. So why am I telling you that? Because the guys who are crewing us are guys I've met from running. They I might like. As they say. This is the first meeting of myself and Matt in person. We speak nearly every other day. I speak to Matt more than my own wife sometimes and you know, that's okay. The other guys, the first guy that's crewing us, he was there in the first attempt of Mizzen de Mallon which I failed miserably. Nearly got the limerick. As I said before, the second guy is a guy who I met in a mid marathon. I've met him three times in my life but he's a brilliant guy, a guy called James. The next guy I ran 100 mile race with, I was in the middle of the hills chatting to him. His GPS watch broke so I suppose he's repairing me with crewing me for a few days. And then Jeff, the guy, the last guy in our crew, he is, he ran with or he crewed us for another hundred mile race that me and my brother both attempted. So a very sort of diverse team from all backgrounds in my, I suppose run on experience. So the team's brilliant. A group of guys, they're all fun, they all love life and it's going to be a brilliant adventure.
- [20:57]
A
Matt, running 350 miles can trigger heat sensitivity, fatigue, even pseudo flares. How are you and Colin planning to monitor your bodies and differentiate between what I'll call normal ultra marathon pain and Ms. Related signals?
- [21:16]
C
Well, for better or for worse, I have a lot of experience in this field, I guess you could say so it's, it's something that you have to be very proactive about and also it really is difficult to tell the difference between is this Ms. Or is this just something brought on because we're doing something that is physically excruciating. So you know, we are, we are trying to proactively make sure we're not overdoing it. Which sounds funny because we're running 350 miles. But what that means is we're going to be run walking the entire time. So we, we haven't decided exactly on what those intervals look like, but it might be something like we run for five minutes and then walk for one and just do that back and forth so that way we don't exhaust ourselves too quickly. That also will help us to ensure that we're always staying hydrated and cool as possible. Although it doesn't get quite as warm in Ireland as it does where I'm accustomed to running in, in Ohio. But yeah, just making sure that we're managing our body temperature as much as possible. Cooling rags and ice, cool drinks, things of that nature, and just listening to our bodies, which is gonna be really important throughout the entire thing.
- [22:46]
A
You know Matt, as you were saying that, I was thinking how grueling not just the run is, but training for something like this. Have you and Colin had to modify traditional long distance training to accommodate your health and recovery needs?
- [23:03]
C
Colin, you want to take that first?
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B
Yeah. So John, this is I suppose like ms, everybody's training plan is different. I couldn't do the same training plan as Matt and Matt couldn't do or not couldn't do, maybe shouldn't do the same training plan as me. So for me I have a bit of a different schedule. I yesterday I just finished Belfast marathon. Then I'm going on to a hundred mile race in four weeks time and then comes Mizzen de mallon which is 350 miles. So my training from the start of the year was for a marathon distance and now the marathon distance distance, the pace stops and I'm going to time on my feet. And after I finish the 100 mile race then my last month I foresee it being more of a taper and more of time just being out and just getting that, keeping the body moving, keeping the body ticking over and keeping that recovery going. So for me my training has been in stages. Build up to a marathon, build up to 100 mile and then a build up. So it's been a nice sort of a nice taper up. And that has been my training plan with just different demands.
- [24:25]
A
Matt, what, what is your training plan? What's that been looking like?
- [24:29]
C
So I've been working closely with a coach and a physical therapist they would tell you that Ms. Or not every running plan needs to look different too when you're training for a big event like this. And so they've really allowed me to tell them what my body can tolerate and not tolerate as we work towards a plan which in my case what I've learned, you know, because I've been into running I guess you could say quite seriously for about six years now, which is since the time I was diagnosed with Ms. And what I've learned in that time is that if I overdo it or I do too much without giving my body more of a rest then I'm going to suffer long term, going to start experiencing other Ms. Symptoms. And so then I'm battling symptoms while also trying to train. So in my case that means I'm doing roughly two weeks at a time of kind of building, doing more than previously. But then every third week is what you might call an easy week where I'm doing significantly less to make sure that my body is recovering and that I'm not pushing myself too hard during the training process.
- [25:49]
A
COLIN Irish summers can be notoriously unpredictable. Weather can change from high humidity to a driving rainstorm within a couple of hours. How have you factored weather into your overall strategy for the run and how might weather factor into managing your ms?
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B
John A bit like ms, the Irish weather, you just don't know what you're going to get from one hour to the next. I went running John and it's been through hailstorms, it's been sunny, then it's been rainy, then it's been back to sun. So you just don't know what's going to happen. Now obviously with weather forecast we will look at the weather forecast and see what's predicted if we get war when we say we get a warm day over here, a warm day is 20 Celsius which where Matt is that's pretty reasonably cool probably. So we just have all the extra equipment with us. The joy of having a crewman and someone with you and you're able to take a phone call and call him back is that our car will be loaded with wet gear. It'll be loaded with, you know, killing gear as Matt said, it'll be loaded with, you know, first aid rec. So just being sensible, just, just having everything for every sort of, every type of weather we'll just be prepared for. But generally the Arish summers can be quite nice.
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A
Well given your previous experience in a long distance run like this COLIN beyond the record and the miles when you're at mile number 250, everything hurts. What's the core motivation that's going to keep your feet moving forward?
- [27:41]
B
For me this would be an easy answer. And about a month ago I got a message and we're obviously trying to raise £100,000, euros or dollars, whatever split that is to the MS, to Ms. Kind of across Ireland, England and the US. So the other part of it was raising awareness and we are raising awareness for ms, you know, and I, we got a message and it said that they're 18 months ago, their 1212 year old child had been diagnosed with Ms. Now that is, you know yourself, that is really, really rare. And for me as a dad, I've got three boys, my twins have, my twins are 12 years old, you can see the correlation between my family and that and I would struggle. But the message ended with it actually gives that parent hope, it gives that parent hope that, you know, there is a future with Ms. You know, it can be rough, it can be tough, but what we're doing also is we're giving people hope that going forward with medications, going forward with the money, hopefully we're raising that goes to research that, you know, we're doing something brilliant. So in 250 miles, like I'll just be happy to be there, I'll just be happy to be up, I'll be happy to be moving, I'll be happy to be running. I'll hopefully still have Matt beside me. Hopefully we haven't fallen out and hopefully, yeah, by 250 mile it'll just be, it'll be easy to go on with messages like that from people.
- [29:27]
A
Matt, let me ask you, you know this run is a massive statement to and about the Ms. Community. What specific message do you want someone who's been newly diagnosed to take away when they see you crossing the finish line at Allen Head?
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C
When I was first diagnosed, I thought I had to change everything that I had in store for me, my life plans. And I was very much of the opinion that I was no longer capable simply because of this Ms. Label. And thankfully what I've come to learn is that although it may not look exactly what we had envisioned things to be like in our own future, we are capable of incredible things. It's a mantra that I live by that I remind myself of and I try and show others as well through the types of things I try and do. You know, it's not always pretty, it's not always exactly, you know, what I thought it would be. But we want people to see that we don't have to limit ourselves because of our diagnosis that we can aim really high. And, and here's the truth, sometimes we aim really high and we still fall short. But if we set our goal really high and really give it our best, I am convinced that we're going to do far more and learn far more about ourselves and what we're truly capable of than had we told ourselves. I can't. So that's really what it's about for us, is helping others to recognize that this isn't just two crazy guys. I mean, we are two crazy guys. We know this. But, you know, it's, there's nothing special about us, really. If we can do whatever our big ridiculous goals are, or at least try and tackle them, then whatever that thing is that you're kind of doubting yourself on, do it. Try. Give it your best.
- [31:43]
A
Matt Naggs Colin Goodman, I want to thank you for being so willing to sacrifice your bodies over a distance of 350 miles to raise research funds and awareness of Ms. I will be watching and listening, and I have no doubt that you're going to be setting that record. Thanks so much for talking with me today, John.
- [32:04]
B
Thank you very much for having us.
- [32:06]
A
That's going to wrap up this episode of Real Talk Ms. RealTalk Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 460. 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. A short while ago, we shared the very positive results of the phase 3 clinical trials for fenibrutinib in both relapsing, remitting and primary progressive Ms. The clinical trial results for phenibrutinib have now been submitted to the FDA for approval. And next week, Dr. Jiwon oh, the principal investigator in one of those phase three trials, joins me to walk us through these positive results and to discuss who might benefit most from fenibrutinib. It's a conversation you'll want to be sure to catch. I'm John Strum. Thanks for listening. Stay safe and make healthy choices. Sam.