Listen to S7E01: The research on lifestyle and MS with Charlie Peel
In this episode, we welcome Charlie Peel, Healthcare Partnerships Lead at Overcoming MS. With nearly two decades of experience in neurology, Charlie brings a wealth of knowledge and insight in the field of holistic MS management.
Charlie joins CEO Alex Holden to explore the latest research on how lifestyle choices—like maintaining optimal vitamin D levels and fostering social connections—can positively impact life with MS.
Watch this episode on YouTube here. Keep reading for the key episode takeaways and Charlie’s bio.
01:47 Meet Charlie and her unique journey that led her to Overcoming MS
05:19 Charlie shares her impactful role as Healthcare Partnerships Lead at Overcoming MS
10:52 A personal mission – why Charlie wanted to work for Overcoming MS
15:11 Dive into Charlie’s research paper on the life-changing outcomes of Overcoming MS retreats and Pathways courses
21:13 Explore the latest research in holistic management of MS
24:23 Discover the newest findings on high-dose vitamin D for MS
28:10 Autophagy’s role in remyelination
33:05 What the MS community can learn from research into other brain conditions
36:42 The power of connection – research on social connections, community and mental health
40:42 Charlie offers practical advice for anyone new to the Overcoming MS Program
Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.
Charlie Peel 00:01
Yeah. So I think the biggest takeaway here is that actually holistic management across lifestyle and medication and therapy, that’s mainstream now. I think five years ago, it wasn’t very mainstream, and maybe sometimes when we’re talking to people, it doesn’t feel like it’s very mainstream, but in terms of the research, it’s kind of firmly embedded now,
Overcoming MS 00:19
Welcome to Living Well with MS. This show comes to you from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own. Don’t forget to subscribe to living well with MS on your favorite podcast platform so you never miss an episode. And now let’s meet our guest.
Alex Holden 00:54
Welcome to the latest edition of Living Eell with MS. I’m Alex Holden. I’m the chief executive of the Overcoming MS charity. Today, I’m delighted to be speaking with our healthcare partnerships lead Charlie Peel. Charlie has been with the organization, she joined partway through 2024 and it’s been a delight seeing her representing the charity at conferences and heading up our healthcare professional circle and looking at how we share the evidence base and the research behind lifestyle and MS and how we work with healthcare professionals and make that research accessible to our community. So Charlie, welcome to the Living Well with MS podcast.
Charlie Peel 01:37
Thank you so much for having me here.
Alex Holden 01:40
Could we start? Could you introduce yourself and talk us through your career and how you’ve ended up working at Overcoming MS.
Charlie Peel 01:47
I have no medical background. I should start by saying that I didn’t do a degree in biology or nursing or anything like that. I did a degree in English lit and Creative Writing, and at the end of university, panicked that there would be no jobs. Something had gone in the newspaper. There were no jobs. So I just applied everywhere. And I ended up at the MS Society, actually, in an admin role initially, and I quite quickly ended up on like, a collaborative project with Parkinson’s UK and the MND Association. Over sort of a five year period, I was project managing, service development work across different neurological conditions, where you sort of brought together all the healthcare professionals and then lots of different people with lived experience, and you heard about their journeys and then kind of looking at the policy and the levers and stuff, and sort of almost redesigning services to work better for both the healthcare professionals and the people with those neurological conditions, and that’s how I sort of got my understanding of what it meant to live with MS, to live with Parkinson’s. It was from hearing those people and then learning about how the services provided for them. I took a career break. Would you call it that when you stop and you have babies? I did that and then when I came back into work, I was working at Neurology Academy, which is an education provider for people who are already working in neurology. So your neurologists, your consultants who want to go into neurology, your specialist nurses, physios, occupational therapists, that kind of thing. And I was working across sort of regurgitating the latest research in a way that was practically applicable to their work, or helping to write educational courses that would give them better understanding of different areas. So I was really fortunate to be able to support a mild cognitive impairment course and some papers around kind of dementia prevention and stuff. I led a health and wellness course. And also, while I was there, I was really, kind of honored to be co leading a working party of people working in MS looking at how we bring lifestyle into the clinical setting a little bit more. And it started out as part of a big project to try and improve access to services and equity of services. And I was leading that with Dr Agne Straukiene, who’s a neurologist down in Devon, and she also has the Bee Well with MS podcast. So she’s very, she very, feels very strongly about lifestyle, as I do, really. And lots has changed over the last five years, as you know, and we were struggling to work out how to highlight the evidence base well, and we made some great resources, but it was really hard to get those used in practice. But it did culminate in the first ever expert consensus for holistic management of MS, which has a lot about the evidence base for lifestyle. And so it was a really fantastic group. But yeah, so that was kind of my career up until Overcoming MS, and I was doing a little bit of freelance work for you guys on the side, and you asked me to share this job on my LinkedIn. And I had a little read and thought, actually, this sort of brings together the stuff I started out doing, the kind of the service development and the making a difference on the ground, and the research and evidence base that I did later, and kind of brings it all together, I guess. So that’s, that’s what I’m doing here.
Alex Holden 01:50
So perhaps you could tell us a bit about your specific role. So I said at the beginning, your healthcare partnerships lead, and why it’s so important, because I really do think, from my point of view, strategically, it changes our focus as a charity, and it really gives some emphasis to a whole different area of our work. So could you talk us a bit about about what you’re doing?
Charlie Peel 05:19
Yeah, so I think, I think you’re right. I think the charity has always existed for people living with MS and their families. That’s the core audience, and that’s where the focus has been. And that’s absolutely right. But I think my role, new as it is, is to just kind of give a secondary focus, really, to say, well, what about if we also look over here at the healthcare professionals? Because there’s a lot of reasons why that’s helpful. I think, firstly, we have an amazing community of people who know where to find us and what to find and what they’re going to do with that information when they found it. But there are an awful lot of people living with MS who maybe don’t know to find us, or don’t know what to do with that information when they have found it or can’t, kind of find the impetus to do anything with it in their lives, and they need some additional support. And they might need hooking up with some local services. They might need a specialist, nurse, an OT to kind of support them on that journey or refer them into other services to unblock it. And so for us to be able to work collaboratively with healthcare professionals., for some people, might be their way of managing to start to make some positive changes in their life. And we know that these lifestyle changes, they need to be for everybody, because we all, we all deserve to live our best lives, don’t we, wherever we’re at. I think there’s another piece around the NHS is really pushing supported self management, it’s called, which is kind of when you help people to help themselves by kind of guiding them, which is a bit of what I’ve just talked about. But actually, our healthcare professionals, they’re really strapped for time and resources, and as much as they want to do this, they have minimal amount of time that they can pour into that. Whereas that’s what we’re here for. We’re here to support people to self manage and so by being able to start to collaborate in that way as well. It’s not just us saying to healthcare professionals, we need you to sign post people to us. It’s us saying we can do a lot of what you’re trying to do for you, leaving you to deal with the bit that we can’t do. You know, the stuff around medication, around therapy, around access to specialist services.There’s something around needing to change the messaging around lifestyle:” It’s nice, but it’s not that important.” And I think that is starting to change, but there is still a role for education in making sure that people are clear about what the broad evidence base is now. So I think this role has a bit of education in it as well, making sure we’re being really, really clear about what the research is saying now, about what new research is coming out that’s supporting that. And I think by bringing together those kind of research pieces, not just in what’s going on kind of out there, in the in the research facilities, but also, you know, how much impact are we having? When we look at our stuff, what is our data telling us? Are people finding the courses we’re providing helpful? Is the information we’re giving them actually useful or not? We can we can look at that critically. We can improve it. We can expand where it’s going. And all of those things together by looking at our data, looking at the research, helping with education, looking at collaboration, all those things together are going to help us to reach people who are living with MS and who need some support and who deserve to understand how to make healthy lifestyle choices and to start to make them and they’re going to reach those people who don’t know that we’re here yet, and don’t know that lifestyle matters to them yet.
Alex Holden 08:33
S big part of it is reach. It is, as you say, our focus is still about the community of people with MS who need our support, but the way to get to those people with credibility is through healthcare professionals. I think it’s worth us saying, isn’t it? I just suddenly thought as you were talking that we’ve obviously got a global audience for our podcast. The focus of your role is we should probably just be clear, is currently within the UK, mainly England and Wales, because of the way that the UK healthcare systems works, but sort of Scotland and Northern Ireland by association. But we’re looking at pilots, and we’re looking at the issue of overloaded healthcare systems, and a lack of support is global. So once we’ve got some models that work and tested that messaging that you talked about, that we would then be able to work with other healthcare systems. But it’s probably important that we’re clear that what we’re sort of talking about today, a lot of that will be UK focused in terms of the systems, not the impact.
Charlie Peel 09:33
Yeah, I think that’s true. But I also think there’s a lot of transferable learning always, isn’t there? You know, supported self management wherever there’s kind of more more affluent social systems anyway, helping to prevent further disease and to help people to live as well as they can if they have a long term condition that is a priority, kind of across the globe. The evidence base that we’re looking at to demonstrate why lifestyle matters that’s still going to be relevant wherever you are, and I hope that actually, over time, we can start to think about, well, how does this look in different communities, in different ethnic circumstances, in more diverse kinds of geographical areas? How can we apply this so it is more relevant? So, yeah, I think you’re right. It is a UK focus, but it kind of has trickle down effects and and kind of crossovers, doesn’t it?
Alex Holden 10:19
Yes, yeah, starting small, but we have big plans, big ambitious plans. So just going back a stage, Charlie, what is it about Overcoming MS, that resonates with you the work that we do? Because actually, that’s a huge vote of confidence for the charity that you already knew of us. You were already working with us as a freelancer, to then go, actually, know I want to be working with them as my as my proper job, as it were, that I took that as a vote of confidence. So what is it about Overcoming MS is work that’s made you go, yes, I want to be part of that?
Charlie Peel 10:52
It just felt like the best way to bring together the kind of the personal, I guess, vehemence that I have around why we need to share information clearly. You know, everyone deserves to have the best available information so that they can make informed choices for themselves. I think we live in a society where there are so many conditions that you you get a diagnosis of and you have to live with them, whatever that looks like, whether that’s an autoimmune condition or a neurological condition or a cardiovascular condition, and the evidence base is growing and growing and growing around all of these that actually there’s so much we can do ourselves, and there’s some amazing medications and there’s some fantastic services, but we have so much agency, and yet we’re not using that agency. Maybe we don’t know we have that agency. Maybe we’re not being given the right information. And I’ve always felt really strongly about that information sharing and the power of sharing information well. And as I said, I was part of that kind of lifestyle group to work out how we do this for MS. Because I think if you live with MS, you get diagnosed quite young, often you’ve got a lot of life to live. You want to live it as well as possible. When I worked at the MS Society, I had a couple of colleagues who were diagnosed in their late teens, early 20s and and you can see the difference it makes to have all the tools available to you as early on as possible, not necessarily to do everything all at once, but just to slowly, kind of chip away at the things that are going to make the biggest difference to you for the longest time. And I have my own kind of personal health story, as so many of us do now. Of and I am a rabbit hole diver. I am perpetually curious. I want all the answers. And so when I had that kind of stock response from my consultant, of, “no, it doesn’t matter,” I was like, I’ve been working in this for a while. I’ve been digging for a while for neurological conditions, I know there’s stuff here. I just have to find it and pull it together. And I’ve also learned that actually, it doesn’t matter how much information you have or how well you put it into practice, actually, sometimes you just get worse, and you have to be okay with that. And life is a bit of a roller coaster. And it’s never about the one silver bullet activity or diet or supplement, it’s always about, you know, the 2% incremental difference that all the different things make. You know, getting better sleep and getting a bit of activity and improving your diet and all those things together. And that even then, you might have those moments where actually you can’t do any of it, and and there’s a big piece of acceptance as well. And so for for me looking at the work that Overcoming MS is doing, it’s meeting people in that roller coaster. It’s meeting people in that journey. It’s giving that information that I dive for, but that other people maybe don’t dive for. It’s giving it in a kind of a supportive way that says it’s okay you can make these changes, and yes, you might have a relapse and not be able to do any of those things for a while, or you might be progressing, and that might feel really, really hard, but we’re here to support you to make whatever changes you feel able to make today, and those might look different to the changes tomorrow or next year, but we’re here, and we want to help you to do it, and that feels really, really important to me, to be able to do that for everyone, but you have to start with an audience, don’t you, and Overcoming, MS, they they have a good audience, they have the ability to reach a big audience.
Alex Holden 14:06
I think, yes, I think that that opportunity is huge, which is exciting. And I think you know how lucky we are to have jobs that you can call it, and I will call it passionate. But we where we can see there is so much opportunity and there is so much that can be done. And you and I, we’ve had some great conversations, haven’t we, when you’re talking about agency and that sense of control over something that actually is happening to your body and you have no control over but actually even the development of science and evidence to say how important that sense of control and that sense of hope is as well, which maybe we’ll come on to if we have have time later on. So I think just moving on then let’s talk a little bit about specific pieces of research that you have done since you have joined us. So you’ve recently written a paper on the outcome as data of our Overcoming MS Pathways and retreats. Could you just summarize that research, what were the outcomes, and tell us a bit about where it was published and the significance of the publication?
Charlie Peel 15:11
Yeah, sure. So what I first did when I arrived was I was like, I was looking at the courses and services that we provide, and I had no idea, even in a freelance capacity, I didn’t know about the different support and services that that we provide, and so I wanted to, I was really surprised to see the impact that that had had. So we ask people to say how comfortable they are with their general physical well being and their general mental well being before they do a course with us, and then after they’ve done a course with us, and I was really, really surprised to see how significantly people felt that that had improved. That’s not saying that they were physically or mentally in a better place, functionally, maybe, than they were at the start, but that actually, when they reflected on how they felt, how comfortable they were with where they were at, it was massively better. So with physical well being, it doubled. So people felt twice as good about their physical well being as they had before they started the course. And with mental well being, it was just under half. It was 46% and I really wanted to share that, so we put a poster into the British Society of Lifestyle Medicine conference, just around the retreat. So looking at two groups of people that had been on retreats and looking at that impact. It wasn’t just around well being, it was also around kind of confidence in being able to make lifestyle changes, confidence in being able to talk to their friends and family and to healthcare professionals. So really feeling like they understood this and that it mattered enough to them that they could share it, and all of those confidence levels went up as well. And I think at the moment, there’s so much information out there, isn’t there on health and stuff, but actually, to be able to show that that information makes a genuine difference to someone’s perceptions of themselves, to someone’s quality of life, the way they feel about what they can do with that, that confidence that they can make a change that’s impactful. And I wanted to show that. So that went to the British society of lifestyle medicine, and we were lucky enough to be able to present on that for five minutes at the poster walk around, which was fab. And then the other piece was sort of expanding on that. So it was looking at three Pathways courses and the two retreats, and looking at all those people together across those same those same factors of data. So it was sort of 163 people living with MS who had gone through one of those two courses. And we saw the same thing. We saw that massive increase in how people felt about their physical and mental well being, in how they felt about their confidence in understanding lifestyle, and then we also could see that that was sustained six months later on as well. So that data, that’s a bigger piece, and that was an article, and that’s gone to the British Journal of Neuroscience Nursing, which is a really practical journal that not just nurses, but a lot of people working within the MS multi disciplinary team and neurologists will read so it’s looking at that practical spin of this supported self management course, essentially, and the lasting impact it can have. And that’s in peer review at the moment, which means other people are reading it and putting red pen all over it for us before it gets published.
Alex Holden 18:17
Excellent, and it is. It’s really important, you know, as we started off with the conversation around the importance of our credibility with healthcare professionals, so we could very easily just say yes, people come on our courses. So our pathways course is our six to eight week online course, and our retreats are six to eight weeks of online followed by two and a half days face to face where people can come together and learn about MS and Overcoming MS program and the importance of lifestyle management within that program. And we could very easily do those and everybody has a lovely time and goes home again. And I think the fact that we do the impact data so rigorously, and anyone who’s been on those courses probably gets quite fed up, but then receiving them receiving a survey before and afterwards, and six months later and a year later, they’re kind of going God that was in the past, but that gives us such an ability using those validated measures that other courses are using. It means we can be compared against other providers. It means that we can then go and talk to healthcare professionals and say, No, look, this is the impact that this is having, and gives you the ability then to go and share it at the conferences and in those publications, where people who might be recommending those courses can then see it. So it’s a lengthy and rigorous process, but it is really, really worth doing properly.
Charlie Peel 19:39
Yeah, I think so. And I think it’s fair to say, you know, we haven’t got it completely right. And we’re looking at those questions that we ask. We’re working out, you know, how can we ask the fewest questions possible of our wonderful community to understand the best information about the impact of those courses, about what it means to people and we are we’re working with the neuro epidemiological unit over in Melbourne, to just work out what those best questions are, so we can ask not too many. But, you know, get good outcomes. I don’t think we’re there yet with that, either, but it’s hope that will help us to understand better, and, like you say, be able to compare what we’re offering with other courses available, and what you know, the impact that that has.
Alex Holden 20:23
And some of those questions can be quite difficult to receive. So if anyone is going on any of our courses and does receive that, I suppose again, the benefit is that then we can sort of talk about the impact of those courses, but we’re well aware some of them aren’t that nice to answer, because you’re having to be very introspective around how are you feeling and sort of your level of comfort with your physical ability as well as your mental health, and they can be quite searching questions. But again, the value in thus being able to use that data to talk about the impact is really important. So for anyone receiving those. Please stick with it. It’s really, really important. Charlie, moving on, what can you tell us about the latest research in holistic management of MS so things like the Overcoming MS program?
Charlie Peel 21:13
Yeah. So I think the biggest takeaway here is that actually holistic management across lifestyle and medication and therapy that’s mainstream now, I think five years ago, it wasn’t very mainstream, and maybe sometimes when we’re talking to people, it doesn’t feel like it’s very mainstream, but in terms of the research, it’s kind of firmly embedded now. So we have that expert consensus paper that came out in May this year, which was supported by a broad range of neurologists and specialist nurses and research neuro physios and dietitians and all amazing people, all looking at the different elements of lifestyle and what the evidence base is for that now, which means it’s not just programs like the OMS program talking about these things, it’s that kind of broader span of research which a lot of different kinds of lifestyle models rest on. And there are lots of different lifestyle protocols out there. But what we can see always is that there’s a foundation a bit a bit like the pillars that the the British Society of Lifestyle Medicine use. You know, there are these pillars of good quality food and getting enough rest and getting good physical activity and having good social connections. And these are kind of these strong pillars that no one will argue against now actually, which is fantastic, because they align with our pillars, which is great. I think also we saw ECTRIMS last month, the new MS Brain Health Report came out, and again, that had some fantastic guidance across all of the different kind of clinical services and support. Here’s one you prepared earlier, but it also had this section on lifestyle, and it’s not just for MS, it’s for those related conditions like MOGAD and NMSOD. I think I’ve got that in the wrong order. Actually, I really apologize. I need it in front of me to get my acronyms the right way around. But it talks about the importance of those lifestyle measures for anyone with a kind of an MS related condition, as well as those with MS, and that’s a really strong position to be coming from that actually, we know lifestyle has such an impact on the brain, and I think that’s important to just point out that in other neurological conditions, like Parkinson’s, like dementia, a lot of the research into autoimmune conditions as well, across all these different areas, we’re seeing these huge bodies of research around the impact that lifestyle has, not just in prevention, but in management. And I think that’s really important as well. There’s crossover in MS, it’s about your immune system, it’s about your brain. So there’s crossover from other neurological conditions, there’s crossover from other autoimmune conditions, and whilst they may not be exactly the same, and the mechanisms in the body are different actually, knowing that if you get good sleep, that’s going to help this part of your your brain, if you’re getting good movement, that helps with these areas of symptom management and with your brain health, all these things, they just give us more and more certainty about the importance that lifestyle has.
Alex Holden 24:06
And I suppose the Overcoming MS program recommends supplementing with vitamin D, which isn’t one of those wider recognized pillars across other conditions, necessarily. So could you talk us a bit about the latest research on vitamin D?
Charlie Peel 24:23
Yeah, so vitamin D is one of these ones we know how important it is for health in general, and there’s been a lot of research that’s pretty undisputed around the importance of vitamin D levels as a kind of a preventative for for MS. It’s a kind of a risk profile, I suppose, if you have low vitamin D, and there’s also some really good, comprehensive reviews now finding that lower vitamin D levels do correlate with disease activity. The area that I think Overcoming MS have have struggled with in terms of the program is the very high dosage levels that they advocate for. And there are similarly high levels encouraged in a Practical Neurology paper, which is a kind of another expert consensus document for vitamin D in MS. But one of the big pieces that came out, ECTRIMS this year, actually really helped around that safety piece. So we are often being asked, you know, is it really safe to have those high levels? So we we encourage between five and 10,000 IUD. And I think that the kind of the national UK, you know, always take this dose, no matter what’s going on for you, is something like 400 so it’s much, much lower. And a paper was was presented on the delay study, which was finding that a high dose of 100,000 IUD every two weeks for 24 months with safe and well tolerated in people with clinically isolated syndrome and relapsing remitting MS, so early MS and clinically isolated syndrome, which is sort of when you are getting some MS like symptoms and things, and you may have a lesion, but it doesn’t look necessarily like MS yet, although the new diagnostic criteria is kind of making all that a bit more confusing, and we don’t want to get into that right now, but the headline was 100,000 IUD every two weeks, safe and well tolerated, which means even if you go up to that upper dose of 10,000 that the program advocates for if you are deficient, that should also now help with that, that argument around the safety of that. So that was an exciting, exciting study,
Alex Holden 26:32
Brilliant, and just a note on those new diagnostic criteria in case people are panicking about that, it’s good news. It should mean that more people are diagnosed with MS earlier, meaning that they can get support earlier. But there is an Overcoming MS webinar that people can search up that talks about the outcomes from ECTRIMS from end of 2024 if anyone’s interested in more about that, and just actually something is we should talk about the pillars, just for anybody new to Overcoming MS, because we’ve touched on the wider lifestyle pillars. So the pillars we recommend within Overcoming MS, we talk about diet, we talk about vitamin D and sunlight, as you’ve just talked about, we talk about physical activity, stress management, medication, family, health, and then what we call Change Your Life for Life. So behavioral change and how to make that change last. So for anybody who is listening to the podcast who’s new to Overcoming MS, those are sort of the seven we call them, pillars, components, fundamentals of the Overcoming MS program. They’re kind of the areas where we provide tools to support people with through through that change. Should you be interested. And there’s lots more information about all of those on our website, just managing a quick advert in the middle, right? Charlie, I’m going to put you on the spot now. A buzz word that some listeners might be familiar with is autophagy. So what is it and what’s its role in remyelination? And in fact, do you want to touch on what remyelination is as well?
Charlie Peel 28:10
Wow. Okay, so let’s do remyelination first. So myelin is this kind of fatty protective layer around the edges of our neurons. And in MS, that is the specific bit of the body that is getting attacked through that autoimmune way. It’s the myelin that’s being kind of gotten rid of, and as the myelin gets damaged, the messages don’t manage to come through in the same way. The neurons themselves aren’t sending the messages the way that they’re meant to. And that’s why we get such a very broad range of different symptoms and experiences, because different parts of the brain, different neurons, different amounts, all that kind of stuff, all is in play and remyelination, then is when that myelin sheath sort of grows back a bit. So, you know, you’ve got that fatty bit being attacked, and then the body’s kind of trying to make new myelin cells to kind of grow it back again. So that’s essentially remyelination. Don’t quote me on it, but should give us enough of an understanding, and I’m going to do for the same kind of very basic version of autophagy as well. My kids call it the body’s toilet flush, which is a lovely way of thinking about it. It’s the process by which we clean the rubbish out of ourselves, or clean cells themselves that are damaged or that are dying out of our bodies. The bit that they like the toilet flush is that your brain, when you sleep, kind of shrinks down and makes this space around the edge of your brain, between your brain and your skull, and all the yuck kind of gets pushed out to the edge and then sort of flushed away down your central nervous system, which is really cool, but it is just that process of kind of cleaning house. Essentially, it’s the cleaning up of the cells that aren’t working properly. And it’s been really looked at in MS a lot lately, because it’s one of these kind of double edged swords. So autophagy has been found to really help prevent the progression of MS, because it reduces oxidative stress, and it helps to activate certain immune cells. So it’s really promoting that kind of refreshing and growing of new cells and that kind of thing which are being affected in MS. But like with anything, you can have too much of a good thing, and they’ve found that too much autophagy actually is negative, and that’s causing demyelination, so that’s causing that myelin to break away again. But when we’re looking at these things, it’s all within those kind of research laboratories working at how we can create new therapies and things. And so my takeaway from this, actually, is that your your body’s natural ability to use autophagy to keep itself clean and healthy is probably a really, really good thing. If you have MS, you’re unlikely to be provoking your body into too much autophagy if you’re just living kind of a normal, healthy life. And so the ways you can really support that are by giving yourself as good quality sleep as you can. And I know that when you live with MS, actually there’s a whole host of different sleep disorders that can come into play, and it can be really hard to get good quality sleep, but making that a priority, working out how to help yourself to get the best sleep you can, will give your body that time to flush its brain toilet and to clean itself out, and also when your digestive system is offline. So fasting has been found to really promote autophagy, and it’s just because your body puts a lot of energy into cleaning itself out, but it also puts a lot of energy into digesting its food. So if you’re not digesting food, you can be cleaning yourself out. So it’s not advocating for kind of three day long fasts or anything. But you know, if you can reduce your eating window a little bit so your body’s got more time from dinner one night to breakfast the next morning, and when it’s not digesting food, then it can be cleaning itself a little bit better. So prioritizing those things could be good.
Alex Holden 32:00
That’s really interesting, autophagy. It’s not something I’ve come across much before in that level of detail. I’m enjoying the fact you have such high level conversations with your children over the dinner table, which is very impressive. I know there was a lot of talk at ECTRIMS 2023 around remyelination, and I was a bit disappointed, as I think I’ve said on a couple of other webinars as well, that there wasn’t much conversation. And I suppose science moves slowly, as as the lovely Gina was saying in a conversation earlier on, that we were having, science does move slowly. Because I think we were hoping to see more evidence around that, although one person at ECTRIMS did say they’re hoping to see remyelination treatments within a decade, and that was quite an eminent neurologist. So that would be really exciting if we did see that. You talked at the beginning about some of your experience with other neurological conditions. So what can the MS community learn from researchers of other brain conditions, so like dementia or other conditions you’ve worked across?
Charlie Peel 33:05
Actually, anything that’s finding positives for the brain health either by preventing kind of disease or whatever in the brain or preserving function, is really important for any person. But if you have any kind of neurological condition where your brain is either under attack or it’s getting damaged or depleted, actually, anything you can do to promote its health is brilliant, and we’re learning a lot of that from particularly within kind of the dementia areas of research. We’re learning a lot of things around how we can prevent dementia, how we can look after our brains, and the Lancet 2024, that was this year. Then the new report came out on the risk things that you can modify. They call them modifiable risks. It’s essentially things that can help decrease your likelihood of developing dementia, and a lot of them are similar to the things that we we advocate for. You know, it was things like reducing the likelihood of obesity and diabetes, so good quality diet will help. There things like social connectedness are coming up very, very strongly, and we know the importance of social connection, and maybe we’ll talk about that a little bit more as well. But there’s also stuff, I think, with MS, cognitive impairment is quite a common symptom that often doesn’t get talked about very much, and we know up to 70% of people with MS might experience cognitive impairment at some point on their journey. So if we’re looking at things like dementia prevention or management of mild cognitive impairment in people, then we can take that information and we can apply that into people with MS, because it’s a symptom that they’re experiencing. We know that people with MS, they lose their cognitive reserve. We call it that kind of those bits of your brain that act as a buffer, so if something goes wrong, they can kind of activate or help. We know they lose that more quickly. So anything that’s going to help with brain health and preventing cognitive impairment has got to be good for someone living with MS, so it’s great to look at what’s going on and to apply that, or even to just go, do you know what? Isn’t it great that lifestyle is being shown to help even more things is being shown to help even more people. I think that that’s a good kind of robust argument to make too.
Alex Holden 35:16
Yeah. And if that means we benefit from funding in other related conditions where research is happening, and then can interpret that into MS. We benefit from that as well that where advances are made elsewhere.
Charlie Peel 35:30
I didn’t even think of funding, actually. I thought more about like services, like, if you’re trying to convince someone running a clinic that lifestyle really, really matters for people with MS, and they’re like, well, I’ve only got 20 people with MS on my caseload. You can say, well, also these same things matter for people with Parkinson’s and for people with mild cognitive impairment, and suddenly you’re looking at a much broader population, and that same information, although it might be helping them in different ways, is really, really helpful, which means you’re more likely to kind of sway people to share that information.
Alex Holden 36:02
Yes, yes, yes, very I think there’s huge value to the overlaps in a number of different ways. You did touch on social connections. So obviously Overcoming MS has our circles, which are local, geographical circles to help people with MS support one another. And then we also have some global circles that are connected around areas of specific shared interest. If anyone wants to know more, go on our Live Well Hub where you can see all of our different circles. Tell us a bit Charlie about the research around social connection, community and mental health, because it’s not just it’s not just a nice to have, is it? It’s absolutely vital.
Charlie Peel 36:42
Yeah, so it’s quite I’ve been talking about this for a while because I’ve listened to lots of amazing books and researches and stuff looking at social connection and the impact on health and that kind of thing. And it’s kind of been a growing area for a little while. And then last year, the World Health Organization made a really significant statement, and they said that social connection is now a global public health priority, because we can see that a lack of social connection has such a significant impact on both physical and mental health across a range of conditions that are on the rise, Things like cardiovascular disease and stroke and dementia and depression. But they’ve also, they’ve also found that a lack of social connection is linked to a higher risk of death compared to things like excessive drinking or obesity. It’s higher. It’s something like 30% more likelihood. So we know that it’s really, really important for your health to good, have good social connection. And then some research has been done in MS, specifically looking at minority groups, people in black communities and LGBTQIA+ communities are more likely to have better health outcomes if they feel that they’re supported by a significant community. They’re more likely to access health services if they feel they’re supported. So we can see that that social connection, it’s not just about our health, it’s also about our ability to engage with our health, perhaps to feel supported in engaging with our health, and then to have better health outcomes as a result. I think also, when you’re looking at things like lifestyle change, actually social connectedness with people who feel the same way as you do, who support your choices, who encourage you in those choices, who can keep you accountable, or whatever that might look like, it becomes even more important, doesn’t it, to feel like you’re supported in making those changes? So I think there’s that piece as well, although I don’t have a paper to support it,
Alex Holden 38:36
I think there’s, I mean, I will do a plug for our circles, because I’ve only been to a couple of circles meetings. But one of the things that I thought was just fantastic for the people there was, they’ve sort of the conversations I was having with people, is they weren’t having to walk into a social group and say, I’ve got MS. And this is what this means. But actually everyone in the group had MS. So so, you know, we all sat down for coffee, and the conversations were around how to get access to gigs, or how to get public transport. It was all, it was all about how to and positive, you know, the ability to do things rather than having to join a group and start off with that explanation of, I’ve got MS, and these are the things therefore that I can do or can’t do, or adaptations. It was just a given for everyone in the room, and therefore a huge sense of positivity. And I don’t have MS, so I won’t go to the groups regularly, but to be able to go along and be part of that conversation, I would, I would really encourage people to go and sharing that sense of positivity and that sense of problem resolution that you know someone else in that room has kind of probably been through every situation you might have been in, or at least have an opinion on it, and it’s always good to share, isn’t it?
Charlie Peel 39:55
Absolutely
Alex Holden 40:00
In the end of our questions, Charlie, I think we’ve gone on for quite long enough, but we could talk we may need to come back again at some point in the future, because there is a lot going on with lifestyle research. I think there’s a lot we could be talking about, and we will make a commitment to making sure we put stuff out on our website, as we did around ECTRIMS and The BSLM and the papers at the end of last year. So what, what tips do you have? Charlie, maybe for us to end on someone new to the Overcoming MS program. So if somebody is listening to the podcast, they’re new to Overcoming MS, they want to make lifestyle changes. Where would you send them first? What tips would you have for what they could do first?
Charlie Peel 40:42
Big question. It is a big question, and it’s slightly disjointed from the rest of what we’ve been talking about, isn’t it, but it is really important. And I think everyone’s got their tuppence, hasn’t they? Some people like to throw themselves all in and do everything at once, and I don’t think that that always suits everyone, but it suits some. But I suppose when I think about lifestyle changes, generally, I think one breeds another. Quite often, you start making a little change here, and then that makes it easier to make a little change there, and then, before you know it, you’re looking back over the last four years and going, Oh, life looks a little bit different than it did then. So I think for me, especially, kind of talking about how, you know, diagnosis often is early in life. I had an amazing person in my life who used to say, there’s a lot of life left. Whenever you’re panicking about something, whenever you’re worrying, she would say, there’s a lot of life left. And you can argue that actually, if we know lifestyle matters so much in MS, you want to do it more quickly, but there’s a lot of life and the most important thing is that the changes stick. So I guess my two bits of that are go slow and steady, and any little change is a good change. Anything you’re doing, if we know physical activity can slow your progression and can help manage your fatigue, that’s a great change. If we know good quality diet can reduce your risk of obesity and diabetes and give you kind of a fresher perspective on on life and a kind of a healthier body all over that’s a good change. If we know that changing our sleep can improve our mood and our pain levels or the perceptions of them, it’s a good change. So any little change is good. And if you go slow and steady, I suspect any little change will make another change and another change until it looks like quite a big change long term.
Alex Holden 42:30
Yeah, yeah. I think that’s really valuable advice. And maybe starting with the things you might you feel are the most realistic, you know, if you know you’re really going to struggle with one area. So some people find diet really easy to change. Some people really struggle. Some people find getting into a routine with stress management very easy. Some people find it really difficult. So maybe start off with sort of areas where you feel you’ll be able to get some successes under your belt, and then tackle some of the harder ones. And again, I’m doing a lot of plugging of our resources today, but we’ve got the Six Months to Overcoming MS course, which is an online course that people can follow, that can help you make the small changes week by week by week. And there’s a lot of information. And again, that’s what the circles in the MS community are there for, to give people the support when you’re struggling of kind of like, okay, actually, no, you can do this, or here’s a quick win, or here’s a work around on something you find it quite difficult. That I think is a big part of Overcoming MS, there’s the program, but actually, I think the thing that makes us so different from an awful lot of organizations is that community of people who are right by your side every step of the way?
Charlie Peel 43:41
Yeah, I think that’s true. And I think there’s different bits you can focus on at different times as well. You know, if your fatigue is so high you’re struggling to get up, thinking about changing your diet or tackling some physical activity, it’s not accessible, but you can focus on some mindfulness or some breathing or some meditation, and the same is true. You know, it’s very up and down, MS, isn’t it? And life is very up and down. And it might be that you find yourself in a similar position a few years later that you were in before, and it feels hard, and that’s where that community can go, “t’s okay be kind to yourself, maybe, maybe try and do this thing instead.” You know, you can’t do all the things you were doing, but you will get back there and try this instead for a while, and I think that can be really supportive as well.
Alex Holden 44:23
Excellent. Thank you, Charlie. I always enjoy our conversations as you know, you always share something with me that I’m learning from I find them very enlightening, but it’s been great to actually do a podcast with you and be able to share some of your fantastic wealth of knowledge with the community, and we will get you back on again at some point.
Charlie Peel 44:43
Well, thanks for having me, Alex. It’s been great talking to you. Thank you.
Overcoming MS 44:49
Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at overcoming ms.org/podcast. You’ll find useful links and bonus information there. Don’t forget to subscribe to the podcast so you never miss an episode, and please rate and review the show to help others find us. This show is made possible by the Overcoming MS community. Our theme music is by Claire and Nev Dean. Our host is Geoff Allix. Our videos are edited by Lorna Greenwood, and I’m the producer Regina Beach.Have questions or ideas to share, email us at podcast, at overcoming ms.org, we’d love to hear from you the living room with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.
Subscribe to this podcast and never miss an episode.
Listen to our archive of Living Well with MS here
If you like Living Well with MS, please leave a 5-star review.
Feel free to share your comments and suggestions for future guests and episode topics by emailing [email protected].
Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.
If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.
With nearly 20 years of experience in neurology, Charlie Peel leads the healthcare engagement strategy at Overcoming MS. Her expertise includes stakeholder-led service development, cross-sector collaboration, and designing education for healthcare professionals. Passionate about the impact of health and lifestyle education, Charlie strives to improve health outcomes and quality of life for individuals while supporting healthcare systems and professionals through evidence-based, holistic approaches.