Episode 460: Running Ireland with MS with Matt Knaggs and Colin Goodman

John Strum (0:00): I'm John Strum, and this is Real Talk MS. It's June 23, 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 Nags 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 twelve days straight.

John Strum (1:06): Oh, and these two men, they're gonna 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 were connected thousands of miles apart through an online community that Matt founded called Running with MS.

John Strum (1:29): 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.

John Strum (1:52): 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.

John Strum (2:22): 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 Nags 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.

John Strum (3:10): 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.

John Strum (3:36): 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 health care professional, like who to call for what, well, that's never clearly explained.

John Strum (4:22): 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.

John Strum (4:47): 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.

John Strum (5:27): That's where seventy six percent 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.

John Strum (6:06): My doctor has prescribed well, here you can fill in the blank. Let's just say it's Kesimpta. So the question is, my doctor has prescribed Kesimpta. 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.

John Strum (6:29): 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 KeySympta might be right 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.

John Strum (6:58): 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 twenty four hours.

John Strum (7:26): 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.

John Strum (7:47): 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.

John Strum (8:27): 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 twenty years. In fact, it's increasing by nearly three percent every single year. Now hearing that, your first instinct might be to worry.

John Strum (9:07): 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.

John Strum (9:35): 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, the number of people living with MS jumped from about ninety four thousand in 2011 to over one hundred thirty thousand in 2022.

John Strum (10:03): Sweden saw a similar leap in the number of people living with MS. But when the research team looked at incidents, 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 eight point two cases of MS per one hundred thousand people to seven point two. Sweden saw a similar decline.

John Strum (10:29): 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.

John Strum (10:56): So what's changing? Why are people with MS living so much longer today than they were just twenty years ago? It comes down to two major things, 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.

John Strum (11:30): 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.

John Strum (12:07): 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.

John Strum (12:48): 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 ECTRIMS Congress. This year, the ECTRIMS Congress is taking place in Toronto, Canada from October 21 through the twenty third. And on October 23 from three to six p. M.

John Strum (13:15): Eastern time, you can participate in the twenty twenty six 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 ECTRIMS Congress so that people affected by MS can see what the near term future holds. You can register at ectrimspatientcommunity.eu, and you'll find that link in today's show notes.

John Strum (14:09): 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 wanna 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.

John Strum (14:48): And you can help the research team by completing an online survey that should take you about fifteen minutes, and then four weeks later, completing one more survey that will only take about five minutes. That's it. Just twenty 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.

John Strum (15:29): 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 Nags 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 Nags and Colin Goodman are preparing to run the length of Ireland. That's 350 miles from the southernmost tip to the northernmost point.

John Strum (16:06): 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.

Unknown Speaker (16:18): Hey. How are you?

Matt Nags (16:20): Hey, John. Really excited to be here.

John Strum (16:23): Well, I'm glad you both are. And and, Colin, I'll start with you since since you're 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.

John Strum (16:45): But what do you anticipate being the most make or break section of the route?

Unknown Speaker (16:50): 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 gonna 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 essence of actually being on the route, which I think I think this will be interesting for Matt because Matt's used to run on on different roads.

Colin Goodman (17:40): 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 I would say the hardest bit about the route is we might hit some very windy, dangerous roads, I would say.

Unknown Speaker (17:57): 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?

Matt Nags (18:12): 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 Finnish our official Guinness World Record Documentation Guide.

Matt Nags (19:13): Very official title.

Unknown Speaker (19:15): 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?

Colin Goodman (19:27): So, John, the Rollins scene, I I love the Rollins scene, and I love the ultra Rollins scene. So why am I telling you that? Because the guys who are crewing us are guys I've met from Rollins. 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 that's okay. The other guys, first guy that's crayonos, he was there in the first attempt of missing the Mallon, which I failed miserably, nearly got to Limerick, as I said before.

Colin Goodman (20:08): The second guy is a guy who I met in a mid marathon. I've met him like three times in my life, but he's a brilliant guy, a guy called James. The next guy, I ran a 100 mile race with. I was in the middle of the hills chatting to him, his GPS watch broke. So I suppose he's repaying me with crewing me for a few days.

Colin Goodman (20:30): And then Jeff, the guy, the last guy in our crew, he he ran with or he crewed us for another 100 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 gonna be a brilliant adventure.

John Strum (20:57): 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 ultramarathon pain and MS related signals?

Matt Nags (21:16): 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 three fifty miles. But what that means is we're gonna be run walking the entire time.

Matt Nags (21:57): So we haven't decided exactly 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 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.

John Strum (22:45): 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?

Unknown Speaker (23:03): Colin, you wanna take that first?

Colin Goodman (23:05): Yeah. So 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 had just finished Belfast Marathon, then I'm going on to a 100 mile race in four weeks time, and then comes Missing the Mallon, which is three fifty miles.

Colin Goodman (23:43): So my training from the start of the year was for a marathon distance, and now the marathon distance, the pace stops, and now I'm going to time on my feet. And after I finished 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 a 100 mile, and then a build up. So it's been a nice taper up, and that has been my training plan with just different demands.

Unknown Speaker (24:24): Matt, what is your training plan? What's that been looking like?

Matt Nags (24:28): 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. I'm gonna 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.

John Strum (25:49): 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?

Colin Goodman (26:09): John, a bit like MS, the Irish weather, you just don't know what you're gonna get from one hour to the next. I've 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 gonna happen. Now, obviously, with weather forecast, we will look at the weather forecast and see what's predicted.

Colin Goodman (26:33): If we get now when we say we get a warm day, over here, a warm day is 20 Celsius, which where where Matt is, that's pretty reasonably cool probably. So we just have all the extra equipment with us. The the 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, recovery.

Colin Goodman (27:08): 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 Arie summers can be quite nice.

John Strum (27:23): 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 two fifty, everything hurts. What's the core motivation that's gonna keep your feet moving forward?

Colin Goodman (27:40): For me, this would be an easy answer. And about a month ago, I got a message. And we're obviously trying to trying to raise £100,000, euros, or dollars, whatever split that is, to the MS to MS kinda 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 we got a message that said that they're eighteen months ago, their twelve twelve year old child had been diagnosed with MS.

Colin Goodman (28:19): Now that is you know yourself, that is really, really rare. And for me as a dad, I've got three boys, 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 there is a there is a future with MS, and, 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 the ghost research that we're doing something brilliant.

Unknown Speaker (29:04): So in two fifty 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.

Unknown Speaker (29:15): 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.

Unknown Speaker (29:27): 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 Mallin Head?

Matt Nags (29:42): 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.

Matt Nags (30:34): It's not always exactly 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 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 gonna 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.

Matt Nags (31:20): 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.

John Strum (31:42): Matt Nags, Colin Goodman, I wanna 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.

Unknown Speaker (32:03): John, thank you very much for having us.

John Strum (32:06): That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered by the National MS Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser at realtalkms.com/400sixty. 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 three clinical trials for fenobrutinib in both relapsing remitting and primary progressive MS. The clinical trial results for phenobrutinib have now been submitted to the FDA for approval.

John Strum (32:49): And next week, Doctor. Jiwon Oh, the principal investigator on one of those phase three trials, joins me to walk us through these positive results and to discuss who might benefit most from fenobrutinib. It's a conversation you'll want to be sure to catch. I'm John Straum. Thanks for listening.

John Strum (33:09): Stay safe and make healthy choices.