S8E2: Highlights from the Living Well Live One day Event

Linda Bloom (00:00)

And I was very fortunate to be in a position where I could, you know use resources around to help to amplify the message and at the time I had no idea how that was going to work out and how to even go about starting a charity but I just figured one conversation at a time and if I was able to help one person then that was making a difference and so now something like today looking out on a sea of people and knowing there’s even more people online and how many people around the world that we’ve touched is really quite quite incredible.

 

Overcoming MS (01:13)

Today’s episode features interviews conducted at the one day Living Well Live hybrid in-person and online event held at the University of Warwick in November 2025. Host Geoff Allix speaks with presenters, overcoming MS facilitators, other MS charities, and even the president, CEO, and chair of the board for the charity.

Geoff Allix (01:37)

So joining me now is Linda Bloom and Alex Holden. So firstly, Linda, so you’ve obviously heavily invested in overcoming this. And what, why, what does it give to you? What’s the program about?

Linda Bloom: (01:56)

Well, OMS was a game changer for me. It completely changed my life. It helped me go from a place of complete despair, a sense of no hope for my future and it gave me tools and it empowered me with things that I could do to take control of this condition and that was 23 years ago and over that time through following the lifestyle recommendations that Professor Jelinek had put together has completely transformed my life and I’m leading my best life. I can honestly say that now 23 years later. you’ve chosen to give back as well, which I think is an extraordinary thing.

Geoff Allix: (02:32)

And that’s something that George Jelenik said, that he had this sort of secret formula and then he realised it sat on his fridge. You’re the megaphone that’s really broadcaster. You’re the thing that’s broadening things. You also felt passionate enough to it?

Linda Bloom: (02:55)

Passionate about it. And actually I felt that it was negligent for me to have this information that changed my life and not to be able to share that with others. And I was very fortunate to be in a position where I could, you know use resources around to help to amplify the message and at the time I had no idea how that was going to work out and how to even go about starting a charity but I just figured one conversation at a time and if I was able to help one person then that was making a difference and so now something like today looking out on a sea of people and knowing there’s even more people online and how many people around the world that we’ve touched is really quite incredible.

Geoff Allix: (03:38)

And Alex, why did you decide to take up the role of MS?

Alex Holden: (03:44)

It’s a big question. think when I was sort going through the interview process, is, it’s, we talked, I said in my opening presentation from today’s event. It’s about the community and it’s the people that I was meeting as I was going through the interview process and reading the stories online around actually it’s the community spirit of the organisation. was talking to someone earlier on who was saying Overcoming MS isn’t really a charity, it’s a movement and it is. It’s a group of people who are all inspired by the same thing and that in its turn is very inspiring to me.

And I mean, our role is almost as you’re saying, it’s our role is to provide the tools, the information we sort of wade through all the research and work out what’s credible, what’s slightly out there and we don’t really want to have anything to do with it so that we can then present that to people with MS so that you can then make your choice around, yes, I’ll have a little bit of that and that sounds good, thank you very much. And I think that’s how I see our role is sort of putting into practice your vision from when you first set up the charity around how we inspire people but we’re sort of providing the practical advice. You guys then make the choices about what you want to do and what you want to make forward. Practical advice but also we’re providing the space and different forums for people to be able to come together in community and help and support each other and we’re there to support them but we’re also there to hold a space for people to support each other as well.

Geoff Allix: (05:15)

I think is really important. Specifically today, there is already those retreats and there’s webinars and things. So what’s today about? have we done the one day event?

Alex Holden: (05:25)

So today is a bit different, which I’m really excited about because the conversation when we initially sort of conceived the idea we’ve not met up with a big group for about six years. It’s a long time since the Overcoming MS community all came together.

And we needed to do something that was relevant for somebody who was diagnosed 20 years ago and who’s been following the programme for 20 years. And just as useful for, I met a couple earlier on who are completely new to overcoming MS, relatively newly diagnosed, to come out with an agenda that works for all of that. But also, as you say, all of our other events, our courses, which are so good, are about how to follow the programme. Here are the tools, here are the techniques, here’s let me explain how the research works.

Today I’m really excited about it it’s about what’s new, because the research changed a lot. When George Jelinek was doing it, he was this only person going, right, I’ve examined all of these bits of research and people were so relieved that there was this one thing that they could look to. Now there are millions of different sources of information. if we can look at, as I was saying before, if we can look at what is new, what’s interesting, but what’s credible and what there is actual validity behind. We’re not necessarily saying you should be doing intermittent fasting, but to be able to say people are talking about intermittent fasting, this is what we do know, this is what we don’t know. That to me, think is then people can only act if they’ve got the right information. And I think it’s an absence of information that creates worry, it creates anxiety.

Am I doing the right thing? Should I be doing this? Is there this new practice today for me is looking at all this new stuff and go, this is what we do know. Here’s some information about it. And I think it’s, it’s different for overcoming MS. I’m quite excited about it.

Geoff Allix: (07:09)

I like the way that overcoming MS will adapt as well. So when there is new findings, and I know that if you actually found that one of a core pillar, then it would be changed.

Linda Bloom: (07:28)

There was a time that we were recommending fish oils and then the research changed to flax-seed oil.

Alex Holden: (07:38)

Well, and the talk about sleep that was this morning, mean, actually when George was coming out with the programme, wasn’t a thing that people were talking about.

The journey that we have come on and you guys as early overcoming MSers have been fighting the battles in quite the right phrase but you’ve been determinedly steadfastly following these belief systems the fact that all of now this evidence is catching up but it’s great there’s this enormous field of research and evidence that’s out there but it wasn’t there before the concept of sleep affecting your well-being and your health wasn’t the conversation people really had not in a scientific way I mean it’s of a given but not in the way we are now. So we have to be having more updated conversations.

Geoff Allix: (08:20)

Okay, with that, so thank you, and personally, but I think you’ve made my life better.

Alex Holden: (08:30)

Well, and am I allowed to say a massive thank you to you? Because I was having a conversation with someone yesterday about how amazing you are and your longest standing volunteer.

We’re very grateful for you. Yeah, the amount of time you give us. Absolutely. I’m so excited to meet you because I’ve not met you in person. So excited.

Geoff Allix: (08:40)

I want to say that I’m world famous around here. Yes, absolutely. Definitely famous.

Linda Bloom: (08:49)

And personally a huge appreciation as well, Geoff, because the way that you’ve been able to share our information over so many years has helped so many people. A lot of people have said that, no, I’m not interested in this and that, but I do listen to the podcast when I’m going through a walk or a jog or whatever.

Geoff Allix (09:04)

I’m joined by Johnny, who’s one of the key OMS facilitators, and you’ve just come off Breakaway. So, can you tell us a bit about what you were talking about?

Dr Jonny White (09:15)

Yeah, first of all, it’s nice to see you again, Geoff. I like that we meet in these situations. been a long time.

Yes, so I was talking about the importance of healthy lifestyle and lifestyle medicines because really that’s often misunderstood, overlooked, not emphasized enough or completely dismissed by traditional healthcare professionals in the MS space. And I was trying to make an argument that that can’t be done anymore. You cannot, you just simply can’t say there is no evidence for the role of lifestyle when you’re living with MS because the amount of evidence continues to expand and is completely overwhelming.

I’m very consistent. I hope I argue that case strongly.

Geoff Allix (09:51)

I think most newer of this data, I’ve seen that over the time I’ve had MS, I guess it’s that 10 years or something. There’s been a shift, hasn’t there? It’s now not controversial.

Dr Jonny White: (10:00)

No, it’s… I agree. think it’s not controversial that it plays a role. I think that a lot of people, because it’s not their field, don’t know how you grab hold of it. What is it that you do? How do you advise them? Where do you point people?

And I think that’s a space where we as an organization and the community can absolutely thrive. If healthcare professionals simply said, listen, I’m not the person who knows about this, but perhaps you should go to these guys. And they might be able to help and guide you. And that’s all we ask really is not to torpedo the idea. Just signpost and send people that way and we’d be very happy to help and we’re trying to launch those.

I am the established medical field. I work as a doctor. It’s not us or them. It’s us and them working together. know, there’s such clear one of the documents I was talking about, brain health time matters from last year. It’s really clear it’s about advanced therapies and holistic treatment. It’s not one or the other. It’s both.

I really hope that that is a reality for more people soon because I don’t think it is often. think it’s very much a still, right, I’ll take this and that’s my MS sorted or I don’t have to think about it. There’s nothing else I need to do. When in fact, we know the best outcomes are when you do engage actively with a community, a way of trying to control it. And then in the second session, you had a group discussion and you were talking a lot about where it’s going with research.

I would say there’s probably never been a more positive outlook. You know, as I said, there’s over a thousand trials, clinical trials going on in field of MS right now around the world. Not all of them will yield positive results, but that in itself is important. So we know what doesn’t help and what we don’t need to use. I think for far too long, it’s been always about relapsing and remitting MS and the therapies and the drive has been in that direction. people living with progressive ones with MS, I think they quite rightly could feel left behind by research. I think that’s changing, now And within, you we already have medications for secondary progressive, for primary progressive, but the options are limited.

Geoff Allix: (11:59)

Well, no, mean, I’m secondary progressive now, and I, there was one treatment. Yeah. It didn’t work. And then, yeah, treatments. Yeah.

Dr Jonny White: (12:05)

And that’s, so that’s, that’s all too common a thing. And so, that’s where things like the BTK inhibitors, the Brutonib, drugs for the of which there’s two or three now which are so so close to coming out and results of which look really good and actually best in progressive ones rather than relapsing often massively important and I think the remyelination trials that are going on again especially for progressive MS they’re really important too so there are lots and lots of positive things and we’re also understanding a lot more about as Phil Startin was saying about the actual biology the processes involved in MSM as you understand more. You can target things and you can find the treatments that work and help.

Geoff Allix: (12:42)

So positive times?

Jonny White: (12:44)

Positive times, yeah.

Geoff Allix: (12:45)

Thanks joining us.

Jonny White: (12:47)

Thank you, Geoff

Geoff Allix (12:50)

So joining me now is a bit of celebrity in the MS world, Lina Nielsen, who did quite well at the Olympics recently. so firstly, thanks for coming along as a celebrity guest. No, thank you. And how is it for someone with MS to be training and competing at that sort of level? I got in trouble actually recently for saying it was the normal Olympics to a Paralympian. No, that’s a big no-no. But you’re not competing in the Paralympics, you’re competing in the Olympics. How is that to compete at that sort of level when you’ve got MS?

Lina Nielsen (13:22)

Yes, we do have some Paralympians who compete with MS. And so we haven’t really seen Olympians compete with MS and myself and my sister were the first ones. So it was a moment for me to raise awareness about how different it can look.

So you can have MS and present with physical disabilities. And while that is true for some of my life, it’s not all the time. So I have to kind of like educate people on what relapsing and remitting MS looks like. yeah, it’s my MS I’d say is quite mild. So I’ll have, I’d say quite like severe relapses, but then at the same time, like very long periods of remission, if that makes sense. So I can train in those periods of remission, like.

So you can have MS and present with physical disabilities. And while that is true for some of my life, it’s not all the time.

I hate to say it as well, like a normal athlete. So yeah, that’s kind of how I’ve managed to get to Olympics was yeah, my type of MS is very, very mild when it comes to yeah. And do think that your like exercise regime helps with MS as well? Do think it’s like two way thing that actually? I we hear a lot about neuroplastic. Someone in the room just like thought, who’s training for a real life at the moment. I said, if you’re able to do it, that’s nothate to say it as well, like a normal athlete. So yeah, that’s kind of how I’ve managed to get to Olympics was yeah, my type of MS is very, very mild when it comes to yeah. And do think that your like exercise regime helps with MS as well?

Geoff Allix: (14:18)

Do think it’s like two way thing that actually?

Lina Nielsen (14:22)

I we hear a lot about neuroplastic. Someone in the room just like thought, who’s training for a real life at the moment. I said, if you’re able to do it, that’s not point of, you know, destruction. But if you can just train those movements while you’re doing that, I do believe that your brain will find other pathways. If there’s a pathway that’s kind of getting damaged or there’s information in a certain pathway, I think there’s something to be said in keeping your body moving so that your brain knows how to rewrite those movements. And I think it’s the same with sprinting. It’s a full body movement. You’re you know, one on one, like at time. And so like that it’s your whole body kind of like training to find other ways. I feel like I know that science is on the line.

Geoff Allix (15:00)

And then and the other thing so obviously like healthy diet is going to be a given if you’re on an Olympic program. mindfulness is the other thing that is one of the pillars of Overcoming MS. Is that something that you have in in your toolkit as well?

Lina Nielsen (15:15)

Yeah. I think mindfulness is huge when it comes to dealing with any diagnosis especially with an MS. a very complex diagnosis, don’t really get a prognosis of what your life will look like after the diagnosis. And so it does become you dealing with it on your own, which I just think is part and parcel of a lesson for the individual. So that’s where things like journalling can become very important, following your journey. I think finding the thing that makes you happy and energizing, finding ways you can cope with relapses, I think it’s a very powerful tool. will really help you in your journey with living with MS. But then also, if you face your MS head on and start to understand that journey, think it does take mindfulness to do that. So I think taking a breath, like taking a moment to go around and spend an hour, like really connecting to MS and connecting to my body and figuring out how things are working and what makes me me. I think that is a whole…

Geoff Allix (16:30)

And finally, what’s for the future? you got big hopes for is it next year?

Lina Nielsen (16:37)

Yes, each year we have something. So, had the Olympics in 2024, and then in 2025 we had the World Championships, which went very well for me. So next year we’ve got the Commonwealth Games and our very first European Championship in the UK.

So it’s going to be a very big summer of sport for athletics and obviously the other sports that we’re doing in the Games. I think we’ve got the World Cup as well, can I not say? But it’s a big summer of sports happening, people get excited for the World Cup and then we’ll have some of that excitement in the Commonwealth Games and the European Games. yeah, I we’ll get excited for that.

Geoff Allix (17:00)

Okay, well good luck for the future and thanks for joining us.

Geoff Allix  (17:03)

So join me now, it’s Tessa. So firstly, can you introduce yourself?

Tessa Miles (17:10)

Hi, I’m Tessa Miles. I’m from the South West OMS Group. I’m one of the ambassadors with you. Yes, we know each definitely know one another very well. And I wanted to just come and kind of give a little synopsis of what I’ve got from so far. And overcoming MS is just…my family, we have an amazing circle don’t we? And there’s always somebody there. So I’m here on their behalf as well but I found Lena’s talk so inspiring and the analogy between sports and having MS and living with MS and the idea of this child that you need to love and look after and it kind of resonated with me with some other things that I’ve listen to on Insight Timer for instance and there’s an anxiety thing that our group’s just been doing and it talks about your inner child and caring and how you would care for somebody else if you saw them in stress. But I think the thing that’s really come through to me with, we just had the Q &A session and Little Bite Size, is we talked about resilience and being able to do these things and the word that’s come up to me is preparation.

We practice meditation because it prepares our body to be able to cope with stress. We practice our sport and our fitness because it prepares our body. And if we know and listen and understand how our body is working, it prepares us to cope with those things that are thrown at us that are much more difficult. And being proactive rather than reactive. absolutely. yes, you do still need to, you know, there are situations that are thrown at you that you completely lose it and you lost words. I mean, I had somebody once say to me, are you a retard or something? Because I couldn’t get my words out. And that stuck with me so badly. But now I almost have, because I’ve now prepared for this situation. I have odd sentences that are somehow in my head that pop up when I’m stressed and I can say, hang on a minute, I just need a minute. My brain and my tongue are not in sync. Just give me a second and let me finish and then I’ll be ready. And yes, that’s from, I was diagnosed in 2009. So I know I’ve been living with MS or as I now want to say I don’t live with MS, MS lives with me and that’s come from Lena today. I’m not defined, we’ve always said in our group that we are not defined by MS but I love that idea that she said, know, I’m not, you know, it’s living with me and so that experience has helped me prepare and hopefully that preparation I can pass on to others and to share and this is what’s coming out today is these top tips, these tools. We talk about a toolkit of what we can have with us. Going outside, long exhales, cold. We just had a question just now about cold water and I love wild swimming. I’ve been doing water aerobics and getting my fitness back because I’ve also been dealing with cancer diagnosis.

For me, I don’t always know whether it’s the cancer or is it the MS, what the hell is my body? So I’m trying really carefully to listen and prepare myself for the next step.

Geoff Allix (20:50)

Being in a circle with you as well, I one of the things, community side of it, I think is pretty important as well, getting that so you make a connection with people. And actually, I think when we have a get together, In a way, I’m actually thinking less about MS then because I’m not, because we’re all on the same journey. know it’s individual for everyone, but I’m not worried about the food that’s served. No, you’re relaxed, aren’t you? we’re all just pleased to see one another. Yeah, so we’re actually just chatting about all sorts. Yeah, we do. And actually it’s kind of really relaxing. And I always say that my best days are when I forget about MS.

Tessa Miles (21:20)

And they’re the sort of days that you do. Yeah, we do talk about starting people ask questions and we share some of those toolkits. We share some of that preparation. But yeah, mostly we just have a good laugh and we eat freely and we enjoy one another’s company. And that’s so good for you, isn’t it? And that’s what’s lovely about being here. I’ve caught up with some of the people that I was fortunate enough to go on the retreat. But I’m also here with some of our circle and introducing them to one another if they haven’t necessarily and learning and meeting new people from new circles. So my family is growing. My preparation is strengthening. My talking is bigger. And doing that here in person is amazing. But hopefully those of you online are also gaining from that. There’s been some little WhatsApp chit chat going on. yeah, yeah. So for me, the word today is preparation, preparing myself for whatever.

Thanks for joining us.

Geoff Allix (22:18)

So, joining me now is Rachael Hunter You’ve just had a group session, a discussion. So, start with, you just go about what you were talking about.

Rachael Hunter (22:23)

So, I was part of the Hot Topics sort of panel discussion. Myself and Yasmin, we were talking about the nervous system and having a little bit of a to and fro discussion about, you know, the nervous system. As someone living with MS, is it our enemy or could it be our friend, you know?

It’s kind of important in lots of ways but I think you know when we live with MS we’re constantly told you know stress is bad for you you know it can kind of activate the fight or flight system which we know is connected to inflammation and so sometimes we can get a bit afraid I think of our own nervous system in lots of respects so it was a discussion around that really and thinking about different ways we can activate the other part of our nervous system, the parasympathetic nervous system, and how we can sometimes use new technology to give us information about our nervous system as well. So like a smartwatch or something. And is that, so what would be a takeaway then? I think it’s one of those, yeah, one of those things like that quite annoyingly comes back to your own preference with tech.

Some people love tech and they love all that data and information and it can certainly be really helpful. We heard from Lena Nielsen, our Olympian today, she was saying how that information is really helpful for her as a sports person. But on the flip side of that, some people find that it can be quite stressful, all the data, all the information, feeling like you have to get 10,000 steps in, if it’s a bad day that might not be, or even if that’s difficult in your working life, that can be challenging.

I think is working out what works for you. But yeah, they can be really useful and give us lots of really useful information that help us monitor and self manage. Sure, but it’s you don’t want to stress yourself out either. Find a happy media.

Geoff Allix (24:15)

And what are some of the key changes that you’ve found in the few years in the field of MS.

Rachael Hunter (24:18)

I mean, particularly in relation to self-management, think there’s just such a more understanding in the MS community of just how much we can do in managing our condition. Certainly, when I talk to people who are newly diagnosed, I really talk a lot about, OK, engaging with your MS team and your medical, you know, professionals who are supporting you. They will work really hard to keep you up to date on new treatments because new treatments are coming out all the time. So have your medical team, you know, have your personal team as well who are supporting you. But yeah, find out the information, make yourself the expert in what works for you, the information that’s coming out. So yeah, it’s changing all the time. And one of the things we’ve seen most of the change in is the research around brain health. So what can you do yourself to promote a healthy brain. And as we know, that’s really well aligned, isn’t it, Geoff, with the Overcoming MS program. So yeah, a lot of the new research just really, I guess, underpins, but also reinforces what we say in the Overcoming MS program.

Geoff Allix (25:25)

And Johnny White was saying it’s quite an optimistic time for people with MS. you go along with that?

Rachael Hunter (25:27)

Yeah, I mean, you I was diagnosed coming up to almost 13 years ago, and, you know, there were not a lot of treatments back then at all compared to now where there is so, so many and so, many in the pipeline. And that’s only in the space of 13 years. So where are we going to be in another 13 years? So I agree. I think it is a really optimistic time. I think the other reason to be optimistic is that we’re seeing the neurology profession and the health services really recognizing the importance of self-management. not just how important it is, but that the research surrounding it is so valid, you know, and really supporting patients more and more with making healthy lifestyle changes. So I think there’s lots of reasons to be optimistic about, you know, managing your MS.

Geoff Allix (26:15)

Good, with that, thank you very much for joining us. Thank you,

So joining me now is Maureen who is the attendee of event today but also the ambassador for the York Overcoming MS Circle. welcome. Thank you. And start off with what have you got out of the event today? What would be some of the key things?

Maureen Haith (26:38)

I think it’s just fantastic to meet so many people and so I went to Edinburgh six years ago and it’s just It’s exactly like that, you you can come on your own, not knowing anybody and everybody you talk to is, on the same page and very friendly, just, make new friends throughout the day and just to hear the speakers as well and, reinforce some of the pillars.

Geoff Allix (26:55)

It’s an odd thing, isn’t it? Because they always say we’ve all got a unique disease. However, no one else sort of gets it like other people with MS. They understand you. And what inspired you to become an ambassador as well for the circle?

Maureen Haith (27:10)

Well, I really enjoyed the conference in Edinburgh six years ago and when I was there I ended up sitting next to somebody who was from York as well, less than two miles from me. By coincidence? absolutely. Yeah, we just said, you know, where are you from? like, And we continued meeting and we used to joke and say we were our own, you know, sort of little private circle and then I got involved in doing a book group reading through the big OMS book with Gina and somebody else. just talking things over with other people I found really helpful. And I thought I should be doing more of this and allowing other people within the York area to have the benefit of speaking to other people.

Geoff Allix (28:02)

And would you encourage people to get involved in a circle if they’re following the program but they’re not involved with other people? ⁓

Maureen Haith (28:10)

Absolutely yeah yeah you can get hints and tips from other people you can encourage other people or you can be encouraged and there’s somebody to turn to if you need a bit of advice yeah.

Geoff Allix (28:22)

And there’s been a lot of talk about what’s new at this conference so is there anything that you’ve learned from here as someone who’s experience don’t you like it?

Maureen Haith (28:32

It was interesting to hear about the intermittent fasting. I tried that a few years ago, the 16-8, you know the time restricted eating. Yeah. And I think I just found it too restrictive and in the last few months, well the last couple of months because I retired at the end of August so which is fabulous. And I’ve just fallen into sort of time restricted eating without even thinking about it. we have our evening meal about six, half six, and then I go to the gym or I swim in the morning and I’m going a bit later than I used to and I never eat until I get back. So I’m finding it sort of half past eight, nine o’clock for the time I’ve had my breakfast. So I’m, I’m doing know, 14 hours fasting without even thinking about it. So it was good to hear, you know, that that is a possible really helpful.

And I think the whole thing about that sleep counts in that, you know, there’s eight hours without thinking about it. actually you do four hours before that, four hours after you’ve done 16 hours.

Yeah, yeah. And I, you know, people say, you know, how can you exercise without having eaten for so long?you don’t actually notice it, you you don’t want to exercise on a full stomach. yeah. Okay. And have you had a good day? I’ve had a fabulous day. Yeah. I’m shattered, but I’ve had a fabulous day. Yeah. Thank you for joining us. Yeah. Thank you.

Overcoming MS (29:57)

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Geoff Allix (30:22)

So joining us, Yasmin Neves, we have met before. We have, I think twice. We’ve done two podcasts. So you’re here as a speaker at the event. So what have you been talking about?

Yasmin Neves (30:35)

That’s a really good question. I think it’s important when you’re dealing with some really serious and heavy topics, sometimes to bring some lightness to it and go, you always haven’t got to look at it through a really serious scientific lens. Sometimes it’s just bringing the human element to it and having a little bit of a laugh. It just lightens the mood. That’s why I think anyway. But no, it’s been a really good day, I think.

Geoff Allix (30:55)

And so what would be some of the key takeaways that you’ve come across?

Yasmin Neves (31:00)

There’s a real, again, I say this all the time about this community and I feel like I’m a bit of a broken record, but there’s such a great energy in the room. And it’s always a good reminder for me to go, okay, we’re doing really good work here at Open OS and we are having a positive impact on not only people who have been on like retreats many, many, years ago, they’re still coming back now and like refreshing their knowledge, but people who are newly diagnosed and kind of walk in a little bit like I was, a rabbit in the headlights, not really knowing what to do.

And just seeing those sparks of inspiration in their eyes. And I’ve spoken to a few people who I met on the door when they walked in and now during lunch, and they’ve just sensed a real shift and they kind of feel a bit more empowered because they’ve got this community around them now. I’ll speak now.

Geoff Allix (31:50)

And where do you think things have changed? What’s like what’s new in the world of Overcoming Yes? Has there been any advances?

Yasmin Neves (31:55)

I think the main change recently with the vitamin D recommendations, they have changed for overcomers. I think what’s been really exciting about today’s sessions is that we’ve talked about some hot topics. It’s topics that overcomers are recommending. It’s almost like what is going out there in the world? What else could potentially be looking at and thinking about? So things like your gut microbiome, things like sleep, things like your nervous system, is it your friend or can you work with it to regulate yourself, smoldering MS. So these aren’t things that are part of the current Overcome MS programme, they are things that I think are good conversations to have and if people feel inspired to want to know more, hopefully we can look into it. And the thing I love about Overcome MS is that they are constantly, always looking at the programme and going, Is it still right? Has the science changed? Because, you know, science does change. And so would you say if there’s those things which may be not part of the core program, maybe it’s fasting would be an example, that people try those things if it’s not, you know, one of the do not do? I think I say this all the time as well. Everyone is very much on their own journey and we’ve all got very different bodies. We’ve all got very different lifestyles, varying levels of disabilities and we’ve got to find what’s right for us and someone might try fasting and go yeah this is exactly what my body needs someone else might try it and go it’s not right for me where I am right now I think it’s all about empowering people to take back control in all aspects of their life and going what do I need to do to look after me

Geoff Allix (33:33)

okay with that thank you very much for joining us.

So joining me now is Miriam, who is the Chair of Trustees at Overcoming MS. So welcome.

Miriam Jordan Keane (33:40)

Thank you. Thank you very much. And I believe you’re newly appointed in role? Nearly two months. So 15th of September I was appointed. Yes, it two months today. Well, yeah. Yeah. So what inspired you to take on that role? Well, I already have been sitting on various charitable boards and chairing a development committee of one of them. And I just thought, right, I’ve been a trustee now for probably eight years in total of various different charities. And I thought I’d really like to chair a charity. And then out of the blue, I got a phone call from a recruitment consultant who said, I’ve got a brief that we think would be really interesting for you. it’s overcoming MS. And three years ago, just about, I was diagnosed with MS. So it just felt like this is absolutely perfect for me.

So went through the interview process and the more people I met, the more I learned about the charity, the more excited I was. So I really wanted it and I’m really pleased I got it.

Geoff Allix (34:45)

And what’s today about? Is this your first event you come to? Absolutely, yeah. So what have you found as an attendee?

Miriam Jordan Keane (34:50)

It’s amazing. In fact, I feel like I’ve learned so much today in a bunch of hours and things that I didn’t know about, even about a condition that I’m living with on a daily basis. So the speeches have been inspirational, but I think it’s also just that sense of community. And I said to someone over lunch, I’ve never been in a room with more than one or two other people with MS, but to be in a room where almost everybody who’s sitting there is living their own unique version of the condition because we all have a very everybody’s MS is different is something that you often hear but everybody almost everybody in that room is also living with MS and trying to deal with it and an event like this you know the charity is all about living living well with MS and hope and it just feels like there’s so much hope and optimism in the room so I’m loving it.

Geoff Allix (35:47)

So where would you say as you’re sort of looking from the top down, where is the charity going do you think? mean, it’s moved on hugely from the original George Jelinek and founding it to now where it is. But where do you see it in the

Miriam Jordan Keane (36:02)

Absolutely. Yeah. And, you know, I’ve had the wonderful privilege of spending quite a bit of time with Linda, which is amazing. And I’ve also met George, obviously virtually, given that he’s in Australia early in the morning for me, late in the evening for him and their legacy is incredibly important as we look to move the charity forward. But I think it’s small but mighty charity and every day more people are being diagnosed with this condition which is chronic, which is lifelong. It can be, speaking personally, very overwhelming when you hear the diagnosis and a charity like Overcoming MS. which, well, there is no other charity like it, which is all about creating that community, bringing hope to people, and also helping people learn how to live well with a lifelong condition is amazing. So for the future, we need to make sure that more people know that this charity exists so that I didn’t know when I was diagnosed. And I think it’s really important to me that on diagnosis, people know that this charity exists and is here for you. And we’re also very passionate about making sure that we have the healthcare professionals, the neurologists, knowing what we’re doing and using what we’re doing as a support for whatever medications. And medication is part of the program to make sure that when people are being recognised as having the condition and then maybe prescribed a course of medical treatment that also lifestyle, living well, the things that the charity does are part of it. So, you know, it’s a charity, a small charity with very big ambitions and I have really big ambitions in my time as chair to make sure that everybody who is touched by this condition knows that we’re here and Overcoming MS is here to help.

I very much hope you succeed in that mission. So do I. Thank you for your day and thank you very much for joining us. Thank you, it’s been a pleasure. Thank you.

Geoff Allix (38:10)

So, joining me now Neil Stanley, who has been talking about sleep at the conference. tell me what’s, give me a little crazy of what you’ve been talking about.

Neil Stanley (38:20)

Well, the thing with sleep is that it’s central to everything. It’s the basis of what we build a healthy life upon. so when we talk about diet or weight loss or exercise, or coping strategies, depression, pain, all of these things are underwritten by a good night’s sleep. And so we try to do many of these things. We try to live healthily, we try to live well. But if we don’t have our sleep as optimized as they can be, then we’re going to be sort of fighting with one hand tied behind our back. And people I don’t think realize the importance of sleep. They see sleep as something they have to do. They may not be doing it well, but they still have to do it. And maybe in MS, there’s a sense of hopelessness that, you know, poor sleep comes as part of the illness and therefore what can we do? So that’s what I was talking about. We’re talking about that whatever situation you may be in, that any improvement to your sleep will pay dividends. And so I was giving tips on how to get a better night’s sleep and also say outlining the importance of why that is something we should be aiming to do.

Geoff Allix (39:36)

Is it a quality or quantity thing? it like you your eight hours and you’re good?

Neil Stanley (39:40)

Well, eight hours is a myth. So it’s getting the right amount of sleep for you. And essentially, if you are asleep, If you give your body and brain the time it needs to get the sleep it needs, then the quality of sleep will be done with the brain and the body itself regulating. So if you can reduce the number of awakenings and aim for a consolidated night’s sleep, that would be the best thing you can do. But again, with an illness like MS, that’s going to be difficult. And we’re both middle aged men. there are other issues. very much other issues that come come aboard to there. So but as I say, sleep is self regulating, if you can improve your sleep as much as you can, you will get the quality of sleep that you can at that stage of life or disease progression. So that that’s the important thing to aim to be in bed for just a bit longer than you know you need to be asleep. people say, well, how do you know how long you should get to sleep? Well, essentially, it’s the time that allows you to feel awake, alert, and focused during the day. If you feel good during the day, you’ve had enough sleep. If you don’t feel good during the day, you probably haven’t had a good night’s sleep. Do you think, should you wake up naturally? Is that the right amount of sleep? Well, yeah, mean, hopefully.

Yes, I mean, your body, given the chance and without any disturbance, whether external or internal, the body will naturally wake up when it’s had enough sleep. And you should go to bed when you feel sleepy, regardless of what time that may be. If you feel sleepy, you should go to sleep. And in an ideal world, your body will wake you up naturally and you’ll, you know, and as long as you feel okay at that point, then it doesn’t really matter what time it is. People think, oh, you I must get up at seven o’clock. So if they wake up at five o’clock, this is somehow a terrible thing. But if they feel fine at five o’clock, then get up at five o’clock. mean, this morning, I woke up at quarter to three. I really didn’t need to wake up at quarter to three. I needed to wake up at five o’clock to get here. But I woke up, I knew I wasn’t going to go back to sleep. Instead of lying there tossing and turning, getting frustrated because I needed to get up at five, I just got up, switched the light on, read a book for however long I needed to, then about a quarter to five I got up.

Geoff Allix (42:10)

And so, as we hear a lot about sleep hygiene nowadays, what would be some key takeaways if someone wants to improve their sleep hygiene?

Neil Stanley (42:15)

Well, sleep hygiene is a of a misnomer. It’s sort of a cover all term for any sort of sleep tips, know, put 10 sleep tips together and you’ve got sleep hygiene. And really, you can simplify it even more than that. You can go down to three tips. And those are a bedroom conducive to sleep. So one that’s dark, quiet, cool, comfortable, a relaxed body and a quiet mind. Any other sleep tips fit into those three bins shall we say. So it’s finding the way that works for you. So when I say a quiet mind, well how do you quieten your mind? Well how I quiet my mind may be very different from you. I I always read before sleep. You may not. You might listen to music. You might do yoga or journaling or whatever. So it’s finding the way that works for you. But you need to put the day to bed about 45 minutes before you go to bed. So put your cares and worries, don’t open the gas bill just before going to sleep. Don’t argue with your partner just before you go to sleep. So, you know, those common sensical things, but it’s just seeing sleep is important. The minute you see sleep is important, you’ll start doing those behaviors that will give you a good night’s sleep. Okay, with that, thank you very much for joining us.

 Thank you very much. Thank you, Geoff. Thank you.

Geoff Allix (43:40)

So a returning guest to the podcast. So you’re here today. What’s your role today?

 Rabiah Coon (43:43)

So I’m doing a talk like comedy slash hopefully like somewhat inspirational to talk about like is laughter the eighth pillar. So I just kind of propose that maybe there is an eighth pillar for everyone, really. And for me, it’s laughter. And so maybe it’s that for some other people, maybe it’s not, but yeah. So why would you say it’s important? Yeah. I think laughter is important because I think it, my understanding is that it, relieves stress in a way. Stress management is a big, it’s part of a pillar of Overcoming MS, but also I think just in general for our general health. I think laughter is like a positive expression of, emotion essentially. we also cry. think crying is a good stress reliever too, but that comes out of a different emotion. maybe. Do you think that laughter could take you out of a sort of negative spiral where you’ve got, we’ve got an illness that is incurable?

If it’s gonna do anything, we’re gonna get worse, not gonna get better. for sure. actually, think independent of that, they’ve found that actually MS causes depression more than any other condition. Yeah. Is there a benefit to laughter? Can that break the cycle? I don’t think it cures anything. I think that… Yeah, it’s interesting with the depression factor because I definitely have dealt with depression for a lot actually. it’s kind of like the tears of the clown kind of thing with me, right? But I didn’t really credit MS with it for a long time. And I saw them as separate things. And then it just over time, I came to understand more like, you know, having a chronic illness anyway, but then also one with the, the possibilities of MS, which is you know, a reduced quality of life over time did weigh on me. And I didn’t necessarily realize that actually it was at the overcoming MS retreat earlier in the year that I attended that a few things really hit me, like a few aha moments. And I’ve lived with MS for 25 years. So it’s a long time. And like, it was kind of like teaching, you know, for a lack of a better word, but an old dog knew new tricks or new information. so laughter does it cure it? No, but it can be a stress relief. Like even if you laugh, you know, a little bit, like at least it’s a moment and maybe it can, can, you know, they all say laughter is contagious. Certainly growing up at home, like me and my brother and sister would like just laugh and keep laughing and to get worse and worse. And so we got in trouble, you know, but I think, I think starting to frame things in a way like where you can laugh at them helps. And it doesn’t mean you’re always gonna laugh at them, but at least maybe you’ll have the memory of the laughter that will help you too. Because I think over time, like we all have different symptoms and different levels of mobility and different things that happen to us. And, you know, it’s an invisible illness a lot too. And I think that, you know, just being able to like say, yeah, like I fell, but, and that’s horrible, like to fall in front of people. But then the way someone reacted is funny sometimes. Like I fell, so I fell in Camden where I live and this guy was like, you you got to stop drinking so much. And I was like, I mean, maybe that’s true of me. Like, but it wasn’t, I didn’t fall because of that. I just fell because I fell, you know? And so then it was just funny. And then these three guys were all treating me like I was super drunk. And I thought it was like, they were really kind, but it was also very funny to me. So was like, I’m not drunk. then trying to convince people you aren’t drunk makes you seem drunk. So I was like, wait, am I? Like, what’s going on? I just went to the M&S, you know, to buy food. And I think it was just like, I was embarrassed, but then I was almost like, well, their reaction is so over the top the other way that I just kind of was like, forget it. You know, and I told whatever my friends like, yeah, these guys. And I was trying to convince them I wasn’t drunk and that was making it worse. Then they would like really thought I was, you know.

Yeah, plus sort of having MSVs, I’ve become really good at falling over. Yeah. I don’t, I have not broken a bone. don’t, you know, I can fall over. it’s a talent. Yeah. I can, I, I would very rarely hurt myself. No, I get it. I’m good at falling over. I get it. I mean, in my talk, part of what I’ll talk about is how, I like as a tourist, I’ve seen a lot of cities from the ground, you know? But I mean, literally from the ground. Like, so, yeah, so I don’t know. I mean, It’s not a cure. It’s not anything other than just saying like, and for me, my question really is like, for me, it’s laughter. Laughter has been important to me because I do stand up comedy for one thing. So it’s like a metric of success, I suppose. But even before I was doing that, I’ve always used laughter to deflect things and whatever. so bringing it to the MS fight is no different. And for someone else, the eighth pillar might be something different. And so that’s kind of a thing I’m going to pose too. Like what’s your eighth pillar?

It’s like the seven we know, right? Cause they’re all scientifically proven, but there’s also other motivations people have and other things people do to cope in addition to those things. And I think mental health is like such a big part of stuff and there’s stress, but there’s other stuff with mental health too. I like that idea of having a toolkit. So people talk about it. I think that’s one of those. It’s something you can bring to it help you. Yeah. And have people who like, there was a talk, Lena, um, the Olympic athlete, she was talking about like your team and I and having a team to kind of back you up and I think yeah we all need a team and like I need people who are my non-MS friends to get not to understand the MS fully but just to understand like I can say something and it’s not a big devastating thing like I can just say yeah I’m feeling bad today and whatever and then you know maybe I can make a dark joke and and get it as much as I need my MS friends to understand because the none of us is MS. We are not a physical embodiment of something weird. This is a condition that’s part of our lives and just like any other thing would be. And so we don’t want to always be talking about it, always being seen as it, at least I don’t. But I think humor is a way to make it relatable too. So I kind of, I don’t know. It’s just, it’s what I try. I think you did a brilliant job. Thank you. Thank you for talking to us. Cool. Yeah. Thanks a lot, Geoff.

Geoff Allix (49:34)

So joining me now is Amy from MS Together. So welcome to the conference. Thank you. so MS Together, where do you sit in the MS charity space? What’s your niche, if like?

Amy Thompson (49:44)

So we focus on supporting people aged 18 to 35 living with MS. We have like a nationwide presence and then we offer lots of different services to the kind of younger adults living with MS but also to anyone that’s affected by MS as well. So yeah. And so do you find, because I think most people are diagnosed that sort of age range, I wasn’t, I was older when I was diagnosed, but is that typical like in the sort of 20s? Yeah I think it’s most commonly diagnosed in your 20s and 30s. I think that’s also potentially getting a bit younger. I think because, you know, the diagnosis is getting quicker and it’s becoming, people are becoming more aware of the fact that young people can also have MS. I think for, you know, quite a while it was seen as a bit of an older person’s condition, but I do think it’s becoming more common for younger people to get diagnosed as you think younger people haven’t, like, challenges because of their age group? Yeah, definitely. I think that’s one of the reasons why I wanted to set up MS together. Because I think when you’re kind of in your 20s and 30s, and even, you know, in your teenage years, you’re going through so many different kind of life events. You know, you’re at school, you’re going to university, you’re getting your first job, you might be changing jobs, you’re starting a family or thinking about starting a family, and so many other things in between. And I think when someone gets diagnosed during that kind of life stage. The need for support is so much more sometimes because you you’re trying to to navigate these these life events but you’re also trying to navigate your new life living with MS and everything that comes with that. So I think there’s there are definitely specific needs that younger adults have when it comes to the support that they need.

Geoff Allix (51:40)

And in terms of so overcoming MS is looking at Holistically looking at think is the proper word, the whole thing, so healthy lifestyle as well as medication and everything. So are you aligned with that sort of idea that, you know, keeping yourself healthy is part of the treatment plan?

Amy Thompson (51:50)

Oh, definitely. I mean, from even just a personal perspective, when I got diagnosed when I was 21, I probably wasn’t looking after myself as much as I could have been. I was at university at the time, so obviously, going out too much and not prioritising my health. But then over the next few years, I realised that when I was making changes, like exercising more and eating a bit better, and they weren’t even drastic changes, but just being a bit more mindful about what makes me feel good and what doesn’t, I think I saw a massive difference during that time. So it’s definitely something that I see a lot of people at MS Together talk about as well. Things that have helped them and just introducing better kind of decisions and just looking after themselves a bit more. And if people want to find out more about you, how would they get in touch? Yeah, so there’s lots of different ways to get in touch. And we’ve got a website which is www.mstogether.org. We’re also on social media at MS Together Official. And you can also just email us at [email protected]

Okay, thank you very much. Thank you so much.

Geoff Allix (52:54)

So joining me now is Dom, or maybe better known as the MS Guide online on all forms of social, I believe.

Dominic Shadbolt (53:03)

It’s kind of spiraled, Geoff. Yeah. Started out five years ago with a man you know, called Aaron Boster a doctor. Yes. And he was a friend, he took me into studying YouTube, Geoff. mean, I was wondering about it. And then it’s spiraled from there, YouTube, TikTok, Instagram.I’ve put some content on LinkedIn, but that’s sort where my professional self lives. so, what have you been up to lately? Would that be cycling across Canada? So earlier this year, I cycled across Canada to raise money for MS, brain health being the big thing. mean, I’m heavily involved in the world now. didn’t getting involved. I deny my MS. I’ve had it for 34 years, but I embrace it. I’m not sure that’s right word. know, at least, you know, I know and had five different DMTs. It’s just, you know, it is like, I feel like we’re all fighting a rear guard action to a greater or lesser extent. These days. There was no information and stuff like that. There was no internet. When I got diagnosed, I was sent away with the wise words from the neurologist when I said, so what should I do? Eat less red meat? That was it. But that’s not terrible. My father had MS and he was not told that. And he was told basically. Do whatever you want because you know, don’t want make your life any worse. So he was still smoking. He wasn’t even told to stop smoking. In those days, there was nothing for MS. So they knew that it was a greater or lesser time to receive until you ended up in a wheelchair. I mean, when I was diagnosed in 93, most of the charity’s imagery was around people in wheelchairs. And I’m thinking, certainly that’s not me. I don’t feel like this. I don’t feel like I connect.

I was younger, now there’s charities. I know you’re speaking to Amy from MS together. It was still with the younger people. There was nothing. To me it was just old people in wheelchair. When you’re 23, anything over 35 is old. But mean, thankfully it’s all changed so much. And so you, because you do regular, you go to all the conferences, you interview all the experts. what would be some takeaway things that you’d say for people that someone’s newly diagnosed, what would you say, know, what should they be doing? A couple of easy things are get on the highest efficacy therapy as soon as you can. It’s about brain reserve, it’s about preserving your function. All these, you know, well not all these people, there’s really some people like I’m gonna juice kale and fight this naturally and you’re thinking…It makes my heart sink. You don’t want to be horrible, but you think good luck with that. The data does not support it. The highest efficacy thing earlier. Number two, live a brain healthy lifestyle. Exercise, diet, sleep and boy it took me a while to come to that. You know when you’re young and you want break, know, you’re 18 or 20 or whatever. It’s like that’s for other people, old people. And all of sudden you are one of those old people.

And the efficacy thing, think there was a tradition, well certainly it I think it was actually sort of written down. escalation versus… They you on the lowest one, didn’t they? No, that didn’t work. And so you’re building up your disability until they get you to the decent drugs. And it’s like, was absurd. It was like you had to win the prize of the most efficacious drugs by suffering irreversible disability. It was like perverse, you know? And you think this system could only be jumped up by somebody who didn’t have to live with what you and I have to live with. because we both had semitrauda, but that meant that we failed one another in the treatment. But I I assure you, you have a sick eye, too, and it doesn’t look like it. You know this invisible disability thing? So I have really bad diplopia if it’s not corrected by glasses. They can’t go any better. I have a huge focal length difference between my eyes. So in the next 12 to 18 months, I’m going to need both lenses replaced in my eyes. and what they call squint surgery. Otherwise, I value my eyesight and the ability to do things like get in the car and safely. But you don’t see it, do you? We’re sitting here, who would know? But you’ve got a progressive degenerative disease and I just wish that these good drugs that we have now were available when I was diagnosed. So would you say, from what Johnny was saying earlier, is this an optimistic time? I know we’ve got MS, but would you say that there is possible… There isn’t a cure, but where the advances in understanding have come. So I would pick a great deal of optimism and from a general thing. And I know everybody talks about AI, but it’s used properly. I mean, there’s a lot of number crunching, shall we say, with MS. Research going through, there’s I know there’s research use now that is turning onto everything has been done to look for links, it can just do so much more than you and I can. Yeah, I’m on the part of a company which has developed an insole that uses AI for gait measurement. because the thing is neurologists are kind of like lawyers, if you ask 25 neurologists for an opinion, you’ll get 25 opinions. And they tested this. So they gave these neurologists a video of this person walking and asked them to assess it. 25 different assessments from trained experts. So these insoles make it, they take 200 measurements five times a second. And at least you get an absolute baseline. So there can be no difference between you and me. This is it. It doesn’t cure anything, it doesn’t help it, but it provides really good, accurate, reliable, repeatable information. They can tell when you’re having problems with your RMS before you can, it’s your gait changes. Or let’s say drugs working better.

Yeah, those kind of technologies, there’s some positivity. I’m on the board of a trial where we’re looking at the use of AI in MRI. So its ability to look at things. I mean, I would say AI, it doesn’t need coffee. It is never in a bad mood. It’s never had a bad night’s sleep. You you plug it in, and it does the same thing today that it did yesterday and the day before. So once it’s properly trained, it’s not a neurologist replacement, when you know that you can believe it, it’s in use already in many parts of the world. It just reduces the workload, it enables the conversations. So they have an MDT to talk about our drugs, a multidisciplinary team at the hospital. Neurologist, neuropharmacist, MS nurse on the minimum, and there can be other people, but neuroradiologist.

This informs the discussion and the AI can see if your lesion has increased to one millimeter at some point of it. Bear in mind it’s a 3D thing. Humans don’t always get that, as good as they are. That’s what I mean. That’s how AI is going to be, the optimism for me, comes through how that is going to interface with the healthcare and make our lives better because there’s no curia. As a final point, we mentioned your own all the socials. How do people find out about you? Because you’ve got a lot of content out there. It’s at the symbol the MS guide. So if you go to at the MS guide, whether it’s on So TikTok, Instagram, YouTube, or I’m on LinkedIn as well. Dominic Shadvo. So it’s, yeah, that’s how people find me. Okay. Yeah, recommend check out. Thanks very much. Appreciate your time.

Thank you. Cheers.

Geoff Allix (59:58)

Joining me now is Eleanor from ShiftMS. So welcome to the event. To start off with, can you tell us a bit about ShiftMS and what it stands for?

Eleanor Bate (01:00:04)

Yes. So ShiftMS was set up quite a while ago now by George Pepper, who was diagnosed with MS when he was in his early twenties. And he set up Shift because he basically felt like he couldn’t find a place where he could find people like him with MS. Obviously he was diagnosed quite young and he felt like all the places he was going were maybe people that were further on in their journey than him. So he set Shift.MS up and we have been on the web for a long time, but we are an online digital community and charity and we now have an app. So about two years ago, the app was launched and that is essentially an online forum where people can ask and answer questions about their condition, they can find people to chat to that are like-minded like them and message each other. There’s also a collection of videos on there with MSs in themselves. So a lot of it is about community, would you say? Yeah, yeah. It’s very community initiative based, I think, because these days, especially, I feel like, you know, it feels like there’s a lot a loss of kind of third spaces and places where people go to spend time with each other in person. So online has become a natural social place, but it’s also a place that’s not always filled with positivity when you think of, your kind of generic social media channels. So it’s basically just trying to be a place where people can go to find a bit of positivity and learn a bit more about their MS. And what’s your sort of takeaway on the the side of lifestyle and MS. So it’s a healthy lifestyle charity, becoming MS, but also not anti drugs at all. whatever it takes, one of the taglines. What’s your thinking? you sort pro drug, anti drug, pro healthy lifestyle or where does it sit? So one of our things that we always say is at Shift is all about tackling MS with urgency. So MS is something that it can be easy to kind of sit back and put your head in the sand or be in a stage of denial, which is completely natural and valid. taking control of your health is the most important thing. you know, George has always talked about how getting on a DMT quickly, you know, has helped him and how, how it’s beneficial for a lot of people in the community if they can. But also doing that alongside healthy lifestyle choices. healthy diet, know, taking supplements, exercising and taking care of your mind. We do a lot of stuff in terms of my videos and volunteering where MS is talking about mental health and how they kind of maintain positive mental health in times of crisis. So yeah, I think we’re kind of like a bit of a, a joint approach, you know, ⁓ if you can be on a DMT ball, so, engaging those healthy lifestyle choices.

And one of the main things, how would people find out about you? You’re international, I believe, UK charity, but with an international reach. So how do people find Shift.ms? I’m guessing that might be the website. Yeah, so we do still have a website. We’re not sure on the future of that since we’ve got our sparkly new app. But if you search Shift.ms on Google Play or App Store, that’s where you can find the app and it’s completely free to download. Right. OK. Well.

Thank you very much for joining us. Thank you for having me.

Geoff Allix (1:03:22)

So we’re at Living Well Live and joining me today is Sarah from MSUK. So welcome to the event.

Sarah-Jane Elliot (1:03:30)

Hi, thanks for having us. It’s really nice to be here. Yeah, and it’s good to have other MS charities, I think, involved that we’re not in competition with each other. We’re all there to help everyone with MS. 100 % MSUK, feel like our charity and our services that we provide complement Overcoming MS really well. know, what we believe in is providing emotional support so that people with MS can make informed decisions about how they want to live with their condition. And, you know, we speak to people on a regular basis about how diet and lifestyle changes can have massive impact on how they can live with their condition. And we’re always recommending the MS diet to our service users. And yeah, I think it’s a great event to come to. So thank you for having us.

That’s nice. And so it’s UK charity, obviously. So if people in the UK are interested, where can they find that? mean, I’ve seen is it Pathways magazine? that your? Yeah, so New Pathways magazine is as old as the charity itself, over 30 years. And we say it’s our magazine for people with MS by people with MS, because it has all the latest news and research in it. But also, most importantly, it has real life stories from people living with MS. And, know, we’re not medical professionals, we can’t give advice, but sometimes you just need to hear others who have been in your position. So that’s kind of how new pathways works. And then we also have a helpline. And, you know, there are no two to three subjects. If it’s important to the person with MS, then you can call and talk to us about it. And you don’t have to have a diagnosis, you’d be trying to get one. And we also support healthcare professionals with their questions, friends and family, carers, you know, we’re here for everybody. In addition to that, we offer peer support and that’s groups of people that meet online. Some have themes and some are just drop in sessions. And you don’t have to come and talk about your MS. Sometimes we’ll just talk about what’s on TV that week, but it’s just nice to sit with a group of people who get it. Yeah, totally. Cause we have similar sort of thing. have like groups and actually it’s nice just to chat. the people you’re chatting with, we’re just talking about normal things, but they all are on the same. They understand. And you know, you don’t have to explain why you’re sitting and not standing or whatever, you know, all that kind of stuff. So that’s nice. And then we also have our online activities. So we offer a variety of weekly online sessions, exercise classes, chair yoga, qigong, information sessions about different symptoms. And we get different experts from different industries. So we’ve had you guys on I think talking about the MS diet, you know, so that people can learn about things that perhaps they haven’t come across before. And again, it’s about choice, providing people choice, but all of our exercises accessible, different levels of ability.

 How do people find out about you? What’s the best way?

So you can visit our website. That’s ms-uk.org. And on there you’ll find all of our services, lots of information and our portal which is where you can access the online stuff. And you just register, it’s free to register and you can take a look at all of the different events coming up and  sign on and get your ticket basically. And if you can’t make the event at that time, most of it is on catch up as well. So you can view it at later dates. Okay. And thanks for joining us. Thank you so much. It’s really nice to be here. Thank you.