S8E1: The Research on Lifestyle and MS with Rachel Johnson and Dr Jonny White

Jonathan White (00:00) 

We’ve focused quite rightly about lifestyle. think that medication, think we do have to mention it. It’s a really important part of this. It’s a key pillar within the program, as many will know. And it’s difficult to say, but I feel like I say it, that there’s never been a better time to have MS in terms of the sheer volume of work that is being done and the really positive results that are coming out. And I personally just think this is so reassuring to see the breadth of these studies. So it’s not just new DMTs and relapsing remitting MS. That’s largely old news and being glib, but that’s been there for a long time. It’s the fact that we’re seeing really effective medications in secondary and primary progressive MS. 

  

Alex Holden (00:15)  

Welcome to the latest edition of Living Well with MS. I’m Alex Holden, I’m the Chief Executive of Overcoming MS and today I have the pleasure of speaking with our Head of Information and Research, Rachel Johnson and our Overcoming MS Medical Advisor, Dr. Jonny White. ⁓ Rachel and Jonny, welcome to Living Well with MS. 

  

Rachel (01:43) 

Thank you. Good to meet you. 

  

Jonathan White (01:43) 

Well, thank you. 

  

Alex Holden (01:43) 

Shall we start? 

  

Rachel, could you maybe introduce us? if you could just introduce yourself for the listeners and just talk a little bit about your career and what has led you to working in Overcoming MS. 

  

Rachel (01:56) 

Yeah, absolutely. Thanks, Alex. So my academic background is in psychology. I have a degree in psychology and a master’s degree in social and organisational psychology. I’ve always been really interested in the way that people think and behave and make decisions particularly about their health. What also grabbed me during the course of those degrees was obviously they have a big research methods component. 

So that’s learning how to design studies, how to analyze data, critically evaluating evidence, and basically turning very, very complicated human behavior into something that can be measured and understood objectively. So that’s something I find really interesting. And it was those interests which led me to work in a health research role in the charity sector. 

So previous to this role at Overcoming MS, I worked for a holistic cancer charity which actually has a really, really similar ethos to Overcoming MS. So both charities focus on combining the best of modern medicine with lifestyle support to give people the best chance of living well with their health condition. So something that I’m passionate about is giving people the knowledge and the skills and the confidence to manage a health condition. You know, it can be a huge shock being diagnosed with MS or cancer or know any of these serious conditions and people are often felt like they have no control over their health and over their situation so I believe in empowering people through the right information support so they can make positive changes in their day-to-day lives so that’s why I’m really thrilled to be now working for Overcoming MS in an information and research role to use my skills and experience to help people access that kind of support. 

  

Alex Holden (03:38) 

Thanks Rachel. So and Johnny, many people will have met you on the podcast before but we may well have new listeners joining us today. could you maybe both sort of, but let’s start with you Johnny, talk through what your roles are at the charity, sort of how you’re working together and why the area that you’re working in is quite so important. It’s something we’re giving a lot of time to at the moment. It’s something I’m really passionate about but perhaps if you guys could just explain that. 

  

Jonathan White (04:04) 

Yeah, so I’ve worked for the charity in various roles for quite some time now, but usually on my own in the past. So I started off as the medical advisor when we didn’t really have that as an area of interest or research. And it really started off in a very ad hoc way, answering individual questions and queries, writing up research pieces as blogs and appearing in podcasts and these sorts of things. And it really, really, really evolved, I think probably during COVID. When we as a charity evolved as well, so we had much more of digital focus and we started to think much more, I think strategically about how we phrase and frame and present research findings because I think people need to be really, really clear on the fact that there is just an enormous wealth, enormous wealth of research going on, particularly into lifestyle and holistic aspects managing MS and supported self-management. These are enormous topics that we need to get better at sharing. And I couldn’t do it as one person on my own. And I’m very glad that Rachel has joined the team. Rachel sort of keeps me on the straight and narrow and highlights the research that’s coming because there is just enormous amounts of it. And then we try and work out what is important, what is relevant to our community, because not all of it will, of course. And we try to then put that together in a way that is, I suppose, accessible, understandable, dare I say fun, for people living with MS and to further our cause of everybody who has MS or lives with MS having this vital information to enable them to make the choices that matter to them. 

  

Rachel (05:33)  

Yeah, thanks, Johnny. Yeah, so I’m really, really enjoying working with Johnny. It’s such an interesting area to work in. And like Johnny said, there’s so much research out there. It’s a really, really exciting time for MS and lifestyle research. So I’ve got kind of two core functions within the charity. So the first of those is the quality of our health information. And I’ve got a really interesting stat that I’ve wrote down, which is that in 2024, we had almost 287 thousand unique website visitors and it’s perhaps even bigger for 2025 but we don’t have the final numbers in for that yet. So we’ve got a huge amount of people coming to our website looking for health information so we’ve got a huge responsibility to make sure that the information that people are accessing through our website is as high quality as it can be, that it’s meeting people’s needs, that it’s really accessible, it’s trustworthy and ultimately that it’s going to have a really positive impact on people’s lives. And then the second part of my role is looking at how we evaluate the impact of our services. So we’re already collecting some really, really interesting data, looking at things like quality of life and self-efficacy and social connection. 

So over the coming months, you know, throughout the course of 2026, I’m going to be looking at if there are any outcomes that are missing that we could be looking at, and then also maximising the impact of our data collection through conference abstracts and reports and academic papers. And then people with MS and their loved ones and healthcare professionals can see the benefit that we’re having on people’s lives. But obviously, I don’t have a clinical background, so that’s why Johnny and I work together so well. So I’m very grateful that Jonny can kind of bring in that clinical accuracy to our work too. 

Jonathan White (07:16) 

And I think, thank you, that’s very kind. But I think that part of this as well is that we as an organization have such a responsibility in sharing that information with healthcare professionals, which I think, know, community comes first, rightly so, but they will only hear about our message if healthcare professionals are telling them largely because we can’t do it on our own. So we need to make sure the information, as Rachel said, is reliable and trustworthy, relevant to them, but also that we’re helping them to do their job. We’re not adding yet another thing that a neurologist or MS team has to do for their patients. Instead, giving them the tools they can say, do you know, we’re not the experts in lifestyle, but this is an organization, a charity that you can trust and go to for that information, for that support. And we would love to be working alongside more of them on a regular basis. 

  

Alex Holden (07:49)  

And I think that’s a really valuable point, I think the two of you have talked about your roles, but you’re not the only people leading on this. so, Jonny, you’ve obviously, as you said, been involved in the organisation for a long time. Rachel’s been here joining us midway through 2025. But even since then, I’ve noticed such an increase in the number of people, the external experts in their areas, people who joined us at our Living Well Live conference last year, people who are contributing content on our website or into our materials, to facilitators, know, there’s a whole wealth of expertise that really the two of you then are to coordinate and bringing together in a really logical and sensible way. But I think it’s underpinned by a huge amount of expertise. Because as you’re saying, Jonny, there’s the wealth of lifestyle evidence now that is out there. think it’s we need to have more people helping us get through that. Because there’s a lot out there, which is brilliant. I do think it’s making a big difference. On that note, What is coming up this year for Overcoming MS that you are most excited about? Rachel, do you want to start on this one? 

  

Rachel (09:06) 

Yeah, thanks Alex. Yeah, there’s some really, really important things coming up this year that I’m really excited about. One of those things is hopefully sharing some of our insight and evaluation findings a bit more widely. So for example, at conferences through other kind of learning events that we can do with community members and with healthcare professionals. So we’ve got some really exciting findings coming out of our pre post surveys that we use to evaluate our services. But we’ve also got some really valuable and really impactful data that’s come out of our 2025 community survey. So I won’t say too much now, but I’m really excited to share that more widely just want to take this as a chance to say thank you to all the community members who complete these surveys for us and share their experiences with us because that data, please be assured that that data is really being used to develop and further everything that we’re doing at Overcoming MS. So thank you to everybody who gives their time to complete those surveys. Something that I’m also excited about this year is developing a bit more of an information strategy for the charity. So we can think of it more strategically about how we develop health information on lifestyle support for people with MS. And something that we’re also very excited about, probably in the latter part of 2026, is to start looking at bringing in some symptom based resources. So we want to bring in some resources on kind of common symptoms experienced by people with MS. So I sometimes call it the things that matter most to people with MS. It’s the things that people are experiencing, you know, every day. So things like poor sleep, fatigue, cognitive difficulties. So we would really like to develop some information resources that talk about how lifestyle changes can support in each of those different areas. 

  

Alex Holden (11:00) 

Thanks, Jonny, what about you? What’s 2026 holding for you in terms of excitement? 

  

Jonathan White (11:05) 

Well, I mean, obviously I have to wear two hats and so I get very excited about facilitator type things and I’m not sure we’re allowed to talk about it this particular podcast, Alex, am I?  

  

Alex Holden (11:16) 

you can touch on it. think that’s absolutely fine. 

  

Jonathan White (11:17) 

I mean, I’ll touch on it briefly. 

I’m always really excited to be involved in our Pathways programmes. I think that’s an amazing resource. Of course, as Rachel has said, that is a really important source of information and research for us. And thank you for those who get involved. Please, please, please, my plea would be when we ask for information in the surveys, please answer because that pays it forward for the next group coming behind so that we can refine and change things so that we can present our information at conferences and events, hopefully to attract more and more opportunities in this sphere. I’m obviously very excited about the annual retreat which I love being involved in and you know that’s just a life-changing event for so many people. 

I think further to that, with his medical advisor and with that hat on, I’m really excited about a piece of work that we did last year that I’m hoping will start to bear fruit this year, which is our BSLM, the British Society of Lifestyle Medicine module that a few of us in the team helped to curate and create, which is now live and available to healthcare professionals and anybody who wants to avail of it can do so for a nominal fee. I think that is a potentially really important piece of work and really crucial in just tipping that balance to give that credibility to what we’ve been saying for so, long to say these are the papers behind, this is the research that correlates with what we’ve been saying and proves the point and can give those healthcare professionals the information and confidence that they need to be spreading our message. So I am very excited about that and any opportunity that might arise for us to partner and further. I love the idea of these organic small partnerships that happen in small organizations where we find that one person sometimes on the Friday afternoon of a three-day event who says, I’d really love to work with you, can we please do X, Y or Z? And those things really excite me when we get research combined with community, that’s what gets me up in the morning. 

  

Alex Holden (13:05) 

Yeah, I agree with that. think we’re attending more conferences because as Rachel said, we’ve got more data. We’re analyzing more about our impact, which gives us things to then go and present at conferences and talk to other people who are working in similar fields. because it’s the joy of being a small charity is that you can react very quickly to those types of opportunities and things like the MS in Employment study that we’re working with University of Nottingham and various other charities on came out of one of those things and it has meant that we’ve enabled more people with MS to participate in the study, which is clearly great for the community, but it also means that we’re then getting the insight from the study around, you know, that is living well, isn’t it, employment? We’re enabling, we’re getting the data, we’re getting the insight around how more people can stay in employment for longer, which I think then again, we’re going to be the first to receive that information as well. So there are benefits on our ability to react fast to those relationships. 

Rachel, you’ve been working on the research section of the Overcoming MS webpage. You talked a bit about the website, it’s very popular, which is fantastic because that’s where a lot of people are coming to find out first about lifestyle and about Overcoming MS. So how does the Overcoming MS programme align with the latest research on self-management for long-term conditions like MS? 

  

Rachel (14:24) 

Yeah, well, first of all, when I started in this role, I was just absolutely thrilled to realize how much research there is on MS and lifestyle. There’s more than I thought there would be, which was a really, really lovely surprise. Obviously, Johnny, jump in if you disagree, but I think the area where the alignment with the wider research is most strong is probably for physical activity. And that’s probably across a lot of health conditions, you know cardiovascular disease, 2 diabetes, cancer, mental health and also now neurological conditions like MS. 

 So I think looking at the literature overall, think exercise is probably the single most powerful lifestyle change that people can make to support their health and wellbeing. And it’s now widely recommended for people with MS. This isn’t just us saying this as lifestyle and MS specialists. This is now widely accepted by many, many health professionals and other MS charities. Exercise can help with fatigue, with muscle stiffness, with mobility, with balance, with strength. So the evidence base for fiscal activity is extremely strong. And also with diet, you know, there’s been a lot of studies coming out on diet, particularly around Mediterranean style diets, so lots of whole foods, lots of, you know, leafy greens and, you know, all of the good stuff that we know is good for us. So there’s also a really big and growing evidence base that shows that having a high quality diet can reduce inflammation, support gut health and actually have a neuroprotective effect which is obviously relevant for many, many health conditions but that includes multiple sclerosis. 

  

Stress management as well. There’s a really sound evidence base. Obviously there’s a huge mental health impact of being diagnosed with a chronic health condition and then things like stress and anxiety and poor sleep can exacerbate symptoms. So there’s a really good evidence base that shows that managing your stress levels can also help with overall quality of life for chronic conditions. 

  

Just wanted to say that there’s also a really good evidence base, now, lots of studies that are showing that when you bring all these lifestyle changes together as part of a wider lifestyle programme, which is obviously what we recommend at Overcoming MS, that’s when you can really bring about the biggest change and the most significant improvements to quality of life and also day-to-day symptom management. So there’s lots and lots of studies that show that that multifaceted approach to lifestyle support is really effective. 

  

Jonathan White (16:57) 

I mean, I couldn’t agree more. just I love that you started off with physical activity and then just listed everything because it was all there. But that’s simple fact of the matter. And I suppose that one of the really reassuring things for me as somebody living with MS, who’s been personally using this program for a decade now is that it doesn’t have to be incredibly prescriptive and there’s not a one size fits all. And I think that the evidence as it comes out is really helping us to understand that more. So when the program was originally devised in the early 2000s, we were using the evidence as pointing this direction and therefore doing things like a whole food plant based diet with additional seafood, avoiding meat and dairy and refined oils seems like a really good way of doing this. Well, now we’re seeing that actually it’s not even the specific components, it’s not necessarily one over another, but it’s the overall picture. It’s the overall diet quality and as Rachel had said, in general terms, eating fairly closely to a Mediterranean style diet seems to be a very high quality way of doing it. So it’s reassuring for me, having done it personally for 10 years, that I was on the right track, but it also gives you bit of reassurance that if the odd time you know, have to have a little bit of chicken and a sandwich in an airport or whatever it is, that’s going to be okay. It’s about the big broad brushstrokes. It’s about, you know, there’s, you know, making this real and pragmatic. So, you know, I personally have a traffic light system where I won’t, you know, there’s things I’ll never ever eat or drink just from a diet perspective, but. 

  

there are things that this is gonna be okay and actually this may have additional benefits and it’s making it work for that individual person living with MS and it really, really helps and reassures me that we can see that all of the evidence now is sort of backing us up on that. 

  

Alex Holden (18:38) 

Thanks, Jonny. What can you tell us, Jonny, about the latest research in the holistic management of MS and sort of any advice you’ve got around how people can talk to their health teams about healthy lifestyle and get sort of the right response back from that, supportive response? 

  

Jonathan White (18:54) 

Yeah, I mean, that’s a difficult two part question that one. The first thing to say is that that can be a very, very challenging conversation. You know, I do this as part of my job and I find it personally difficult when I’m sitting in the neurologist office or the MS nurse. You feel sort of very vulnerable and sort of under the spotlight and that you’re going to be criticised. And that’s OK. It’s OK to feel that way. It’s completely normal. And it’s also emotional because these things really matter and we really care about these things. So fortunately, we do have a little bit of a resource that can be of useful or can be of use there. Yasmin Neves and I did a podcast or a webinar talking to skeptics, I think possibly last maybe 24, early 25, which sort of forced me to think about the things that I had experienced personally as somebody living with MS, but also as a healthcare professionals on the other side of that in my gynae job where I maybe necessarily didn’t understand or agree with individual choices and sort of seeing it from both sides of the coin. But I think my take home message on that aspect would be speak the language of the person you’re talking to. So if you’re sitting in front of a neurologist, talk to them in terms of risks and benefits because that’s what matters to them. So what is the risk of somebody following the Overcoming MS lifestyle program? Well, there aren’t any risks really. There are just loads of tangible benefits. They’re reducing the risk of MS disease activity, of MS progression, they’re improving their quality of life and their mental health. They’re also reducing their risk of developing lots of other chronic diseases that cause so much morbidity and mortality in the Western world. know, like heart disease, cancer, strokes, diabetes, these sorts of things. 

And I suppose have it in your head or on a piece of paper of what it is that’s important to you when you go into that room, what you need to discuss, what you want to talk about, your own personal agenda. So that was the second part of the question. If I go back to the first part of the question, because I like to do it backwards. I think that you should be very, very reassured that in 2024 there were three major consensus position papers published by very, very well respected organisations and individuals in this world, really closely aligning with each other and us on what constitutes holistic and supportive self-management in MS. And none of those things would be surprise to you. It’s about quality of diet, it’s about stress management, it’s physical activity, it’s social connection, it’s not smoking. I can’t remember if I said sleep, but that’s a very important aspect. And these are worldwide publications. There’s never been a better time to be involved in this and saying actually lifestyle really matters to me living with MS. And it’s not just me saying it. There’s an awful lot of evidence coming through behind to support it. 

So I think that that’s exciting, but it’s also very reassuring. There’s nothing that’s come out that has said we were on the wrong track. We’ve refined things, I think specifically around vitamin D and our guidance there as the evidence has changed. But the only other thing that really has changed is that we’ve, and it was a long time ago where we changed the recommendation from fish oil to flax oil for omega-3. Other than that, it’s been minor tweaks and I think we have more room to go there. think sleep and sleep hygiene is a very important piece of work. 

And I don’t know what the Overcoming MS programme 2.0 looks like, but I think sleep and those sorts of things need to be involved in that. 

  

Overcoming MS (22:05) 

It’s not too late to start lifestyle changes to improve your mental and physical health this year. The new version of our free six months to Overcoming MS course has launched in the LiveWell Hub. You can join today, adopt the full overcoming MS program or opt for individual pillars, diet and vitamin D, physical activity or stress management at your own pace. Visit hub.overcomingms.org to find out more. 

  

Alex Holden (22:33) 

Well, that sort of, yes, not necessarily even a change to the programme, is it? But as Rachel said, by giving people resources and support that are around the symptoms that people are experiencing, because those are the things that people need to know about. sort of, think, changing the way we present our information to be around the symptom rather than around the solution or the recommendation, I think will be helpful for people. Rachel, back to you. So you touched earlier about wanting people to fill out 

  

their surveys, which is really, important. And yes, topic very close to my heart, and how we show the impact of our programmes. So like the impact of our free pathways course, our retreats and our other offerings. So tell us a bit about what the data shows, but also why it’s important, because we could just run the programmes anyway, but we need to show that they have an impact. So just talk us through a little bit about that, please. 

  

Rachel (23:05) 

Yeah, thanks Alex. Yeah, so it’s really, really important that we bring really robust ⁓ research methods into how we evaluate the impact of our services. Obviously we could just say, how would you rate this out of 10 or, you know, give us a lovely quote and that’s amazing, but that will only take us so far. So by bringing in more robust methodologies around how we evaluate the impact of our services, that’s going to make our findings more credible ultimately and demonstrate our value to people with MS but also to healthcare professionals and obviously potential funders of our services because obviously as a small charity that’s something that’s also really really important. So the way we bring that kind of robustness into the way we evaluate is through using a pre-post design which people who have been on our pathways and retreats you know you may remember that we asked you to answer some questions before and then again afterwards and then again after six months and that’s so that we can get the longer term impact and gather data on longer term changes that people are hopefully making. So we do use bespoke questionnaires, so questionnaires where we have designed the questions ourselves but what’s really important and something that we’ve done for a year or so now is also to collect data from validated outcome measures. So for people who don’t know, validated measures are questionnaires that have already been extensively tested by researchers and tested kind of statistically for their reliability and their accuracy. So if we see an improvement in scores, we can be confident that there is a genuine change, that it’s not a change that happened by chance and we are measuring what we think we are measuring. So throughout this year, throughout 2026, we’re going to be continuing to use a really, really good validated measure called the MS QOLS, that’s Multiple Sclerosis Quality of Life 29, which is a really, really good validated measure of quality of life, specifically for people with MS. 

We’re also using a self-efficacy scale called the University of Washington Self-Efficacy Scale. And that’s a really lovely short, simple, but validated tool that measures how confident people feel in their ability to manage their health condition. And we already have some really, really great preliminary data that we’ve collected throughout 2025 that does show that our pathways and retreats are having a really positive impact on people’s physical quality of life, their mental quality of life and their self-efficacy. But to be able to present that data publicly and to be really confident about what we’re saying, we do need to strengthen that data set by collecting more data throughout 2026. So as Jonny said earlier, if you receive a survey, if you’re coming to one of our retreat or one of our pathways courses, please, please do fill it in because the data is really important to us and the bigger the data set that we have the more robust and strong our data is and the more we can chat about it publicly. 

  

Alex Holden (26:32) 

particularly the one the six months later because I think in people’s heads they’re thinking well that course was six months ago I don’t need to worry but that’s the really important impact measure because that shows that actually the change and the support that you’ve received is having a longer term impact that’s the thing actually that really demonstrates our impact so a plea yes please everybody don’t ignore the six months one because you feel you’ve already done it.  

  

Jonathan White (26:56) 

Or sorry, can I just add, or the one or two year data, which is I think even more important because this is a lifelong condition and we want these changes to be sustained and grow positively over time. if you can show us that this is true, I can promise you we’ll be shouting about it loudly. 

  

Alex Holden (27:14) 

Yes, Johnny, how can people get involved in research studies? I think there’s a default, there? of it’s drug trials, which we, know, that people can join in drug trials. But in terms of lifestyle, what else can people do? What can people get involved with? 

  

Jonathan White (27:31) 

Yep, so obviously keep an eye on our pages and our information and resources because we are ever increasing our involvement in those sorts of things and if we find something we think is safe and of interest and potentially beneficial then we’ll be telling you. 

  

In the United Kingdom, and not all of our listeners are here, but the MS Register, basically the University of Swansea, would be a very good resource and they have several ongoing studies in the realm of holistic management and lifestyle medicine and MS. I do think it’s worthwhile at least having your head above the parapet and flagging that you’re interested in research with your own MS team because increasingly, yes, they traditionally have been drug trials as lifestyle medicine grows in its popularity and its acceptance, then this will become relevant on a widespread basis. And I think it is important to have your name or your in the hat for that and to say, I want to be involved. 

  

Rachel (28:22) 

Yeah, I just wanted to add about the number of university researchers who come to us for help recruiting for their studies. And that’s something that, you know, people might have noticed if they’re a member of the Livewell Hub, you know, they might see that occasionally will post an opportunity to get involved in a research study. And we’re actually going to work on a page this year where we can post those research opportunities. So look out for that on the website as well. So yeah, in the last few months, we’ve helped to recruit for, you know, a really interesting variety of different studies. So one was looking at cold therapies for people struggling with heat sensitivity. There was another one looking at an online intervention for psychological wellbeing. That was one that looked at people’s experiences of using CBD products for symptom management. So there’s loads and loads of opportunities for our community members to get involved with research outside of clinical trials. And they’re all looking at really varied and know really different interesting things. So yeah do keep an eye out for those opportunities on our website. And just to say that we do have a new internal process for assessing the quality of any studies that come to us. So if anyone comes to us and says could you share the details of my study with your community we will always do a really thorough check. So we’ll check what institutions that research is associated with. Obviously it’s normally a university. We’ll make sure that the study has received formal ethical approval through a recognised ethics board. And most importantly, we will make sure that the focus of the study is about improving health and wellbeing outcomes for people with MS. So, yeah, so do look out for those studies on our website or in the Live Well Hub because they’re really interesting things to be part of. And I think sometimes as a research participant, you can actually get quite a lot out of it yourself. 

  

Alex Holden (30:16) 

And the benefits are widespread, as you say, Rachel, that there are studies on the benefits of community members taking part in studies and the benefits they will see by being part of a community or feeling that they are advancing research. is clearly, as we touched on earlier, that the volume of research that is happening in lifestyle can only be a good thing. And all of these studies are contributing to a wider board of evidence. And then, of course, the conversation we had a few days ago is around early career researchers. If we want lifestyle research to be continuing and if we want more in the future, we need to be encouraging early career researchers. I think that’s a role that Overcoming MS can play as well, is by giving them support around their surveys or by enabling them to be able to get in contact with people who have a diagnosis of MS to either comment on the surveys, comment on the questions or just get more people filling out their questionnaires. That’s going to encourage those people to complete their masters, PhDs or qualifications, complete their studies and then go on to hopefully then do great things and other future studies as well. I think that’s important that we support that as well, their development too. Rachel, moving on to the patient information forum which I know is taking up a lot of time at the moment. Why is it important that we as a charity receive a PIFTIC certification? 

 

Rachel (31:41) 

Yes, so this is a project which I’m very excited about. for people who don’t know the patient information forum is a leading UK membership organization for anybody working in health information. The aim ultimately is to improve patient care through access to trustworthy evidence based health information. And we know that there are huge problems out there with health misinformation with people not being able to access information that is high quality or that they can trust to help them make decisions about their health. So the Patient Information Forum, really good organization here in the UK. And they also run a certification scheme, which is called the PIF TIC, so the Patient Information Forum TIC that is the only UK-wide quality mark for trusted health information. And I’m very excited to say that we are hoping to achieve PIFTIC certification for overcoming MS in the early part of this year. So what this means in practical terms is that we have been busy behind the scenes developing a new process for how we develop our information resources. So primarily for us, that is our website based information. So in order to achieve the PIFTIC certification, we need to show that our process meets the patient information’s criteria for high quality information. So we need to consider many, different things, but those are things like does this piece of health information meet an identified need? Is it written in a way that is accessible for people with MS? Is it evidence-based? Has it been reviewed by external experts? 

Most importantly, has it been reviewed by people with MS? You know, have we put processes in place to measure its impact? You know, do we know that this piece of health information is actually helping people? So if we can show that our process meets all of those criteria, then hopefully, you know, in due course, we will become a PIFTIC certified organization. And then we can display the PIFTIC kitemark on any resources that have been through that process. So initially, all being well, if we get the certification, our first priority will be to get the PIFTIC kitemark on the seven, the web pages that outline the seven program pillars. So exercise, vitamin D, stress management, diet, medication, know, change your life, life, family health. think apologies if I’ve missed any. And just very quickly, there are several reasons why being a PIFTC certified information provider is a really really important step for the charity. So first and foremost it’s about making sure we’re producing high quality information on MS Lifestyle that is actually meeting people’s needs and is having a positive impact. So in this case we want people to go away having read health information resource on our website and feel that they are able to make an informed decision about their next steps with making lifestyle changes. And secondly, having a quality on our information resources is hopefully going to increase our credibility and our trustworthiness, not just with people with MS, but also amongst healthcare professionals who are a core group who we want to reach through our work. So we obviously want healthcare professionals to know that we are an organization that they can signpost their MS patients to for really high quality evidence-based information on MS and lifestyle that really isn’t available anywhere else. So we really want to be the go-to trusted provider for this kind of information for people with MS and you know we believe that having a cut mark of quality on our information resources will really help us to achieve that. 

  

Alex Holden (35:22) 

And of course we’ll still benefit a global community, although it’s a UK based organisation and just it’s worth saying the reassurance, whatever country someone is based in, is that an external expert on information and the way information is presented has looked at our materials and said yes these are good quality and they happen to be based in the UK and registered in the UK but I think the reassurance of quality is relevant whatever country people are in. 

On the topic of research, are there anything for both of you, any sort of studies that you think are particularly exciting or anything that you think is coming up that you’re particularly excited about? what are the things that are really resonating with you? 

  

Jonathan White (36:04) 

If I could jump in to just pivot very slightly, we’ve focused quite rightly about lifestyle. think that medication, think we do have to mention it. It’s a really important part of this. It’s a key pillar within the program, as many will know. And it’s difficult to say, but I feel like I say it, that there’s never been a better time to have MS in terms of the sheer volume of work that is being done and the really positive results that are coming out. And I personally just think this is so reassuring to see the breadth of these studies. So it’s not just new DMTs and relapsing remitting MS. That’s largely old news and being glib, but that’s been there for a long time. It’s the fact that we’re seeing really effective medications in secondary and primary progressive MS, improved understanding of the biology of the disease and therefore symptom management hopefully. We’re loads and loads of work going in around novel therapies, for example CAR T and using our own immune system to affect change and hopefully reduce the activity of MS and potentially reverse it, remyelination, you name it. This is a very, very exciting time. At the time we were recording this, there have been actually a couple of negative study results coming out around BTK inhibitors and how one met its outcomes sensationally, the other one didn’t. That in and of itself is really important in reassuring. It’s showing us that the science is being done properly, it’s been taking it seriously, we’re protecting patients, we’re finding the answers that matter and that just puts a smile on my face. We are ever closer to having treatments for everybody living with MS, which has not been the case for far too long. 

So that would be my exciting thing coming down the track, other than the obvious, which is the stuff that we spend our days doing, which is the lifestyle stuff, which is always incredibly exciting. 

  

Rachel (37:49) 

Yeah, and I agree, there’s just so much research being done, you know, it is a really, really exciting time for MS research at the moment and it’s such a pleasure to be part of it and to learn about this really exciting area. And I think for me, what I would just like to say to our community and anybody listening is really be assured that the evidence base for lifestyle and MS is growing all the time. You know, I have PubMed Alerts set up for MS and diet. 

MS in exercise, MS in sleep, MS in vitamin D, you know, all of these things. And every week I’ve got, I don’t know, probably about 100 studies coming through that I, you know, have to go through, you know, coming through to my inbox from the PubMed alerts, you know, and one by one, they’re really strengthening the evidence base for the benefits of lifestyle change for people with MS. There’s loads coming through on diet, loads coming through on exercise. There’s been a few come through recently on vitamin D. So, you know, it’s growing all the time. 

  

And I think what I have found really interesting, previously, you know, having worked for a cancer charity that had a very similar ethos around, you know, combining the very best of modern medicine with lifestyle support, is that in cancer care, 

Even 20 years ago, people were being told that there was nothing really that they could do outside of their medical treatment to improve their outcomes and to help them live well. They were told to just rest, particularly if they were going through active treatment, maybe if they were going through chemo, just rest as much as possible, just eat whatever you can. It doesn’t matter, it’s not going to make a difference. And now we know that actually it does make a difference. And the evidence base is so significant and so accepted now you know that lifestyle has a huge part to play in cancer incidents but also progression and I just feel very confident that as the evidence base grows that we will also see that shift happen in neurological conditions you know that that shift towards lifestyle medicine alongside traditional medicine, you know, to give people the really best chance of a positive outcome. And I think what’s really exciting is that that shift is starting to happen with the brain health movement and looking into lifestyle for conditions like dementia. So, you know, there is a bit of a movement there. And I, yeah, I think that we can be a significant part of it. 

  

Jonathan White (40:13) 

Yeah, for me it’s generally not a question of is the evidence there? Because I think it really is. I mean, as Rachel said, you could literally drown in the research if you wanted to. I think it’s now about sharing it in a way that makes a difference and the only way we will be able to do that is if we have the credibility to be trusted and listened to. So that’s why the work that Rachel’s doing around PIFTIC, which to me just, you know, as a clinician, I’m like, my God, I just couldn’t even begin to start that. That is just, that’s really hard work that is detail focused and processed around it. These aren’t the things that I think about, but that’s why it’s so important is because the other clinicians also won’t be doing that, but they will listen and respect. They’ll be like, okay, this is a trusted source of information. We can use this. We know that people have checked this. It’s not Dr. Google. It’s not, you know, a random chat GPT. This is the real deal. And we, as Rachel said, deserve to be at the forefront of that. I think we’ve paid our dues by sitting here and doing this work for so long. We now need to be really clever in using our community and our resources to share it so that more and more people, when they’re diagnosed with MS, get told actually there is evidence for that. I say it all the time and so many of us have been told for so long that there’s no evidence for that, that mantra that just destroys hope. That’s not the case. It’s never been the case but we need more people to understand and know that so they will tell the next generation of people with MS that there is lots of evidence for that. Simple changes that you can make for yourself and your family that will make a difference to your condition day to day and in the long term. 

  

Alex Holden (41:45) 

Excellently summed up, Jonny, yes, thank you. think you’re right. There’s been a tangential shift in the quantity and the quality of research. If we go back to 2000, as you said earlier on, there was sort of, we think this is what the research is showing and the work that George Jelineck did to pull together those key recommendations in the programme. I think now the argument is completely one in terms of, yes, there is evidence that lifestyle makes a difference and I think that’s really key as we go into 2026 of okay our role at Overcoming MS is to be wading through hundreds of articles of differing levels of quality and working out for the community, for people with MS to be saying these are the things that are going to make a difference, these are the things that you need to know about. I think our role is in translating huge volume, it’s our role to be able to go and look at the things that are quality versus the things that are maybe less good quality, the things that actually people can embrace and build into their lifestyles and I think that’s how we can really support people moving forward and hopefully with extra clarity and through things like the PIFTIC as well. I think it’s a very exciting time for us. So it’s good to start the year on an element of positivity and looking at all of that research coming through and looking at all the work that Overcoming MS is doing. I think we’re definitely onwards and upwards, which is an exciting time. 

  

Jonathan White (43:13) 

Absolutely. Couldn’t agree more. 

  

Alex Holden (43:15) 

Excellent. Thank you both very much for your contributions today and for coming to speak to us on the Living Well with MS podcast. If people would like to check the show notes for any further information and resources and of course we’re always keeping our website updated as Rachel said with more information about research we’ll be putting up at some point in the next couple of months we’ll be putting up information about trials that we hear about and more around the evidence base more about studies as they come through. always put up blogs when we think there are some interesting developments to talk about and we will be keeping people updated through future webinars, events and podcasts as well. So thank you very much, Rachel. Thank you very much, Jonny. And we look forward to speaking to everybody soon. 

  

Jonathan White (44:00) 

Thank you very much. 

  

Rachel (44:01) 

Thank you.