S6E15 Webinar Highlights: Overcoming MS with ‘talkhealth’ and Dr Jonathan White

Overcoming MS  00:00 

Welcome to Living well with MS. This show comes to you from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own. Help others discover Living Well with MS. If you enjoy the show, please rate and review us wherever you listen to podcasts. And now let’s meet our guest. Today’s episode features highlights from the TH plus expert webinar with Dr. Jonathan white of Overcoming MS recorded by talk health. Talk health is a leading online health community on a mission to help you lead your happiest healthiest life, whatever your condition. They provide a full range of free support services in collaboration with the UK National Health Service, charities and leading health care professionals.  

 

Catriona Williams  01:04 

It’s great to have you to join us, Jonathan, because I think this is probably a first that we’re speaking to an expert who is representing a charity, but also talking about a condition that they have themselves, 

 

Dr. Jonathan White  01:20 

Great pleasure to be here then.  

 

Catriona Williams  01:22 

And what’s sort of interesting is that you’re a specialist in gynocology, and an obstetrician. But what we’re going to be talking about is MS.  

 

Dr. Jonathan White  01:34 

This is a complete tangent from my real job. Yes, absolutely. 

 

Catriona Williams  01:39 

Anyway, so very pleased to introduce Dr. Jonathan White. Jonathan has relapsing remitting MS. And we’re going to talk about how Jonathan discovered you had the condition, to looking at Overcoming MS and looking at the diet and all the other things that make up the program. So we’re going to talk about that. But I think I’m very keen to hear about from a personal side of you, because it’s very easy to go read about diets and programs and I was gonna say regime, and I know it’s not a regime as such, you know what I mean? It’s very easy to talk about these, but it’s much better to talk to somebody who actually follows it themselves, and understands the day to day, what it’s like to live it. 

 

Dr. Jonathan White  02:25 

Absolutely. I mean, if you’ll indulge me for a couple of minutes, I’m more than happy to tell my story. 2015 I was fairly far into my training in OB/GYN doing postgraduate exams and repeating them and working very hard and eventually passing and thank goodness, I was engaged to my wife. She’d been working away for two years and just about to come home. We were about to set up life together. So very exciting, a huge month to look forward to. And I was doing an antenatal clinic in a very deprived part of Belfast. And all of a sudden, I just felt that my left I was just really sore like someone had punched me in the face. And they hadn’t. But it was really, really sore in it, particularly if I moved it and the color vision maybe wasn’t quite as good. And being a medic, I’m very good at denying things to myself. And I said, well, that’ll just be a contact lens. And I ignored it for about a week went through optician and said, Yep, your vision is not as good and that left eye marginally. So that lets give you a new contact lens and did that and I firmly shoved the rest of it into the denial box went back to life. And then about three weeks later, I was at a wedding, good friends of mine in a beautiful part of Northern Ireland. And all of a sudden when I bent my head, my neck, I felt like I just had about 100 mobile phones buzzing inside my pockets. And I thought that really is not good at all. So two days later, I forced myself down to my local A&E went through the front door and said, listen, I think I’ve got MS. And I need an MRI scan. And I was lucky that I didn’t have to wait the horrendous months and years that many people do. But I got an MRI scan within a few days. And that did indeed confirm the presence of inflammatory lesions on my my brain and spinal cord. So that was a bit of a dump. And a course of steroids and I saw a specialist quite quickly and she said well, you’ve got a 50/50 chance this is MS. We’ll rescan you in six weeks. If it is MS, there’s more lesions, it’s MS. And therefore you’d be eligible for treatment. And that’s really good news, because it’s early. So I sort of went off the next six weeks and obviously that was an extremely dark, worrying, anxious, frightening time for myself and Jenny, my wife. And I then went back into the electromagnetic coffin six weeks later and had my MRI scan done again. And I was called into the consultants office on Friday morning, first of October 2015. She forgotten that we were coming at that time. So why are you here again, when I said the results of my MRI scan? Oh, she said Oh, yes. And she pulled up the scan on the on the screen and said yes, there are two more lesions on that scan. So she didn’t say I’m really sorry, Jonny to tell you that you’ve got MS. She said as if it was one doctor to another about a third mythical patient. More lesions on that scan. Just thought for us no good. You know, that’s a fairly life changing moment, right there. So I suppose straightaway, I said, right, what do I do about it? I’m fairly pragmatic. And I wanted to know, and she said, right, well, here’s your leaflets, choose one of these medication options. And, you know. And I said, Well, is there anything else I need to do? You know, okay, I’ll think about that one. That’s fine. But you know, I didn’t smoke. I drank a bit of alcohol at times, you know, when I had a bit of time off, and my diet probably wasn’t that healthy. I didn’t exercise that much at the time. So I’m super busy. And I was very stressed at work and just generally, and said, No, there’s no evidence for any of that stuff. Just take the pills and wish for the best, basically. And I thought that’s just not right that it even if it wasn’t factually correct or incorrect, either way, it just couldn’t be right that this is what it is that there’s nothing else but the medicine and you just hope that you get a good deal and that the deck of cards is favorable to you. So I instantly went away. And I just had to do some, some digging for myself and I was really, really fortunate within about 48 hours, I think I’d find George Jelinek’s book Overcoming Multiple Sclerosis. And I ordered it from Amazon arrived the next day. And I read it. I mean, I just, I almost inhaled it over the space of about I think probably 48-72 hours, I just demolished this book. And it’s a big as you might know, between it’s a big textbook, there’s a lot of stuff and there’s a lot of medical references. It’s not exactly bedtime reading. But what it said in there was made absolute sense to me, you know, as a doctor, I really appreciated the way the references to where the papers there was the science behind it. But as somebody now living with MS, I just knew that this was this had got to be the right way to go. There’s got to be more to this than just taking an infusion or a tablet. You know, this is a condition that didn’t exist 150 years ago. And there’s 3 million people in the world have MS. 130,000 people in the UK and 7000 people diagnosed a year something in our environment has changed to make this now so common. Yes. Okay, we’re we’re really good at diagnosing it now. And MRI scans usually, but we are getting more MS than we used to. And for me, I just thought there’s got to be something to this has got to be investigate the lifestyle thing more. And so over the space of the next six months, I threw my heart very fully into the OMS program and I’m trying to change my lifestyle away from what is a typical western busy person’s lifestyle have far too much meats far too much processed foods, huge reliance on dairy particularly cheese, which I know we’ve discussed, I was a big fan of cheese in all forms, and more to this Whole food plant based diet with seafood, avoiding processed food as much as I could, and eating real food, which is a novel approach in many people’s lives. So not just packets with multiple ingredients, but actually proper food. And yeah, and really, that was the spark that lit the flame that’s sent me off on a bit of a crazy journey with OMS. I sort of got involved with a local group in my, my own area and a good friend of mine, Greg Hendren who had very publicly come out with his MS and the papers and the news, having hidden it for some time. He said, You know, you’ve got to speak to the chief executive of OMS. You know, they’re dying for doctors to get involved with them. And I said, Well, if I can help I, you know, well, but I didn’t really see what I could do that would help them. You know, as a gynecologist for goodness sake. I’m not a neurologist that, you know, but the then CEO Gary McMahon said, Listen, we want to do retreats, five day residential retreats in the UK, and predominantly all over the place, but really, in the UK, they’ve they’ve not been here for a couple of years, and would you be interested and it really started from there. So in the days when we were like to meet face to face, I did retreats in Australia, and Europe and the UK, and one day events and blogs and seminars and research stuff. And it’s yeah, it’s been a very exciting journey ever since. So I really am delighted to be able to share that bit of my story with you today. 

 

Catriona Williams  09:12 

Very quickly, I think I just felt shocking in the with the way in which that you were told because, you know, just because you’re a doctor or a doctor doesn’t mean that when it comes to your own health, you don’t feel the same way as we do. 

 

Dr. Jonathan White  09:27 

That’s right. And, you know, I I’ve learned, I suppose a very valuable lesson from that and that, you know, I don’t think I ever did but I certainly never will ever speak to a patient that way. You know, I’m not criticizing that individual doctors have far too many doctors do that but we need to remember that the person sitting in front of us is first and foremost a human being and not an MRI scan. You know, you know to be told you have MS is one of the most life changing diagnosis you can be given. So I think we could at least give it with some compassion. 

 

Catriona Williams  09:56 

Yeah, particularly because I think most people if you don’t know anybody who’s got MS. You know, most people have heard, you know, luckily, most people have heard of MS. But they don’t know what it means. But they do know that it’s a very serious condition and a life changing condition as well. 

 

Dr. Jonathan White  10:14 

And, and I like many people, I had encountered people with MS three gynecology, and usually it was people who required suprapubic catheters. So they were at a very advanced stage of disease that often had it for a very long time, they often had profound disability, and they were often in a wheelchair using some form of mobility aid. And that was all I knew about MS. So suddenly thought, right, okay, gotta go pick a wheelchair, you know, and that is an I don’t say that glibly, because I’ve heard many, many people say that, it’s, it’s a very, very dark, scary, scary time. But one of the reasons I’m so passionately want to put the message out there is that MS is not does not have to be like that version that we will thought of or heard of, and that there’s much that can be done to change the trajectory of your own disease and the condition itself. And, you know, reason why many, many people with MS can’t live a very full happy, fulfilled life. I certainly know it, despite the condition. 

 

Catriona Williams  11:11 

Absolutely. Um, you know, we’ll go on to the programming in a minute. But it’s very much you know, what really interests me about the program is you don’t have to have MS to be on that program, because it’s very much about being very healthy. And all of those things protect us all from chronic conditions.  

 

Dr. Jonathan White  11:29 

We often at our retreats, you’ll get people with MS. And very often their partners or caregivers come with them. And I remember retreat in Australia, particularly burly Australian said, Can I still drink coffee? And can I still take alcohol? And I said yes. And yes. He said, great. I’m sold, I’ll do anything else. And that’s a lovely thing. But you’re absolutely right, that, you know, essentially what we’re advocating here is a very healthy form of living. So we’re talking about eating real food, plant based generally, which often equates to veganism. But we also say there’s additional benefits to seafood. And I personally love seafood. So eating well, it’s avoiding dairy, it’s getting enough sunlight and vitamin D, which is massively important. 80% of us in the UK at various points of the year will be deficient in the vitamin, and it’s that impacts on our health and a whole pile of ways, not just our bones. It’s it’s managing stress is stress reduction. It’s exercising appropriately, and it’s looking after your family members. Well, you don’t need the word MS, or the letters MS to make that sound like that’s something we should be involved in. 

 

Catriona Williams  12:35 

Yeah, 

 

Dr. Jonathan White  12:35 

You’re absolutely right. You know, the the partners that come along and start to live that way to support the people they care about. Then they in turn get the benefits of hopefully primary prevention for things like heart attacks, cancers, high blood pressure, diabetes, many, many things that cause morbidity and mortality in the Western world. So absolutely, it’s there’s the the way that I see it personally, is there’s no downside. I had to give up meat and cheese. But I can tell you I that wasn’t that difficult. And if I can do it, anybody could because my goodness, I used to love it. 

 

Catriona Williams  13:06 

So did I miss how, first of all about I don’t know if you want to quickly talk about the charity as it is how it’s evolved. 

 

Dr. Jonathan White  13:14 

Sure. So I didn’t I didn’t actually touch on that. But so that’s you didn’t miss anything there. Yes, Overcoming MS is has been registered charity since 2012. It’s registered in the United Kingdom and Australia, New Zealand and the United States of America. It’s based upon the primary research by Professor George Jelinek who was an emergency medicine professor in Melbourne, Perth, originally then Melbourne in Australia. He was diagnosed in 1999 with relapsing remitting MS at a time when there was not very many medical treatments and there was absolutely almost zero research activity going on in lifestyle. And he on a much greater scale than me decided that that had to be different and did a lot of the work. The hard graft works before Google when you actually had good libraries, and put together essentially about 1000 references from many peer reviewed journals give us the OMS program as it stands today and is published in the book which I know  we are very kindly giving away the minutes and you can also get from our website. So yeah, the charity came into being in 2012. And we like to market ourselves as the world’s leading healthy lifestyle MS. Charity. So we’re, we’re essentially focused very, very strongly on lifestyle modification when you’re diagnosed with multiple sclerosis, whether that be in the very early stages or whether you’ve had MS for quite some time. And we believe the evidence is there to say that the OMS program can have a very positive impact on your physical and mental and overall quality of life, mental health, and in many, many ways in terms of reduced relapse rates, reduce fatigue, reduce depression scores, and hopefully giving you a pretty good chance of lifelong good health and living well with a chronic health condition which often has a very negative downward trajectory, we’re really now looking to go out into the world and sing our song loudly and banging the drum for what we think is an extremely, extremely important cause. But at its heart, it’s a community of like minded people trying to support and empower people with multiple sclerosis. OMS circles is essentially our, it’s almost like coffee groups or whatever they sometimes meet in pubs, or sometimes cafes, they sometimes meet people’s homes when COVID allows and their groups around the world of people with MS following the MS OMS program, and essentially led by an ambassador who is an OMSer as we call ourselves, essentially providing support and information and access to some of our services. And that’s one of our really big initiatives. But there’s also as you may have seen, there’s, there’s blogs, and there’s our podcast. 

 

Catriona Williams  15:46 

We’ve got a lot of members who have MS. And it’s very clear to me that it’s really important that they meet up physically or whatever, that they can talk to each other. So that you can really understand what someone else is going is that usual expression, which is almost tied up, but you’re not alone is so just so common. And I think it’s really nice as that especially if you’re on a program like this, especially if it’s you know, because I think we’ve said before that the food part, the diet part is one of the main things and if you’re, for many people could be radically changing your diet helps that they have to speak to someone about it. 

 

Dr. Jonathan White  16:27 

They’re certainly in Europe, Ireland, the UK, US, Canada, Australia, New Zealand, there are lots and lots of circles. I couldn’t say there’s one in your local area just yet. But you know, if you’d like to start one and get in touch with us, it’s as simple as that, you know, it’s entirely driven by the community itself to serve the community. So yeah, it’s an absolute force for good, you know, anytime I engage with OMSers in the community, you always learn something, it’ll always be Have you tried this new recipe for this? Have you heard that somewhere sells this? And that’s at its simplest what a circle is for you know, I’m really struggling with meditation the minute well Have you have you heard about this new YouTube video or course online or there’s a new app available from the store, it’s just, it’s just support and encouragement when you sometimes for some, it’s a fantastic force for good. 

 

Catriona Williams  17:16 

That’s really nice is that it’s like minded people meeting up to support each other. 

 

Dr. Jonathan White  17:22 

Anything with Overcoming MS is just such a positive and happy and, you know, just a really lovely outlook. And I, somebody living with MS. Get a lot of comfort and hope from that. And I really hope that other people get that too, because I think it’s just vital when you’re living with chronic health.  

 

Catriona Williams  17:39 

Really, with all of these things. It’s not necessarily the organization, it just happens to be the group of people that you might be meeting at the time. And then you either click with them or you don’t really or where you find supporter, I think it’s really important is the first place you go to isn’t what you want to carry on trying because there will be a cohort of people that that will work for you. 

 

Dr. Jonathan White  18:05 

Absolutely. Couldn’t agree more with finding your tribe. It’s so important. Yeah, 

 

Catriona Williams  18:10 

Absolutely. 

 

Overcoming MS  18:12 

Have you signed up to the new Overcoming MS app? If not, download the Live Well Hub in your app store and join the Overcoming MS community, get support, find connections and feel motivated to live well with MS. Download the Live Well Hub today. 

 

Catriona Williams  18:29 

If I didn’t know what OMS stood for, that would look like this is a really good idea for you to live your life by looking at all those elements. 

 

Dr. Jonathan White  18:39 

Well, yeah, obviously I would say that, but yes, I wholeheartedly agree that it is, you know, there’s, if you look at each of those individual things, where’s the down side is what like, in its simplest form, it is a whole food plant based diet with or without seafood. And that’s your choice. Although there is some evidence to say that there are additional benefits to eating seafood, especially oily fish, which is high in Omega three and has a source of vitamin D. Sunlight, which is obviously a bit of a luxury where I come from, and in many parts of the northern hemisphere at certain times. So sunlight on its own as a as a source of vitamin D, when our skin is exposed to sunlight and UVB radiation, it will make vitamin D but problem is our sunlight is very rarely strong enough and we all live inside. And we all wear lots of clothes all the time and we have office jobs, etc. So for many people, they need additional vitamin D and specifically with the OMS program, we would advocate between five and 10,000 units daily, which sounds like a lot that actually when you look at a lot of epidemiological data, the average person probably requires about 4000 units a day so when you think that you know you’re adding a little bit on top and by the way, it is completely safe and the vast majority of people there are a very few select health conditions that mean you couldn’t take high dose vitamin D generally speaking five to 10,000 units is perfectly safe, and aiming to get your vitamin D level much higher than would be considered normal because there’s evidence that that in itself certainly can prevent MS. And you’re very good evidence but preventing MS. But when you have MS, there does appear to be additional benefit in maintaining your levels between and what we have, what we would recommend is 150 to 224 nanomols per liter. And it’s worth saying that you can have levels of 400 nanomols per liter, and you would have no effect of toxicity, in fact, probably 600. And that you need to be taking a colossal dose of hundreds of 1000s of units a day. So for a huge majority of people very safe exercise. And it comes as no shock to anybody probably to hear that exercise is good for us. But specifically in MS we knew that there are there are certain neurologists within the world who actually advocate exercise as being just as important as any of the disease modifying therapies. And I totally agree with that. So the recommendation for any adult is to do half an hour of moderate intensity exercise three to five times a week. And it’s exactly the same with the OMS program. So whether that be swimming or yoga, or running or cycling, if that’s what interests you, and that’s what your abilities allow. But it’s really important to say that there’s almost nobody that couldn’t do some form of movement or exercise, regardless of their MS condition. And there’s so many resources to help with that. So our own website has quite a lot of videos and guides and information about getting started. I think that’s probably the hardest bit, certainly was for me. There’s great resources, I know, you’ve had Gretchen Hawley, with you on your channel, and she does some work with us and her stuff is fantastic. And she herself claims there’s nobody that can’t get some form of movement or exercise, regardless of the MS Gym’s another great resource, but it’s finding something that you enjoy. And that gives you a bit of, you know, sort of satisfaction. So for me, when I started, I had a lot of dizziness and balance issues. And that meant that I couldn’t balance while cycling, and I just couldn’t get on a bike or wouldn’t have been safe. So I went to a neuro physiotherapist, and she gave me some specific exercises to do to work on that. And that took some time. But you know, that’s where I started from it. But of general strength and conditioning work, and I am back on my bike, and I really enjoy that just as much for my mental health, to be honest, more than anything else. But yeah, you know, the massive part.  

 

Catriona Williams  22:23 

I think lots of things like that, you know, with exercises is confidence, isn’t it having the confidence, I mean, you must have been very much getting, it’s a real thing getting on something that you can fall off again very quickly. But it is that confidence that actually have a go, you’re not going to hurt yourself, you’re not going to do damage.  

 

Dr. Jonathan White  22:41 

A lot of people worry that, you know with MS that the fatigue that they experience or the the nerve damage to muscles will mean that actually if they go to the point of fatigue ability, you know, when you can’t do that last rep with that, that in some way does damage. But actually exercising to the point of fatigue ability is a good thing, generally, and especially in MS because it’s pushing a boundary. Now of course we all have to be mindful of the fact that if they if somebody exercises, and then they are absolutely busted and completely fatigued for the rest of the day, well then of course, you need to manage that and build up slowly and take it at your own pace. But absolutely, there is no reason why you can’t still push yourself living with MS. I know that I’m fitter than I was two and a half years ago without or sorry, five and a half years ago, but I don’t. So it’s massively important. And meditation I think we can all accept with the last 16 months that stresses and firstly inevitable and unavoidable, and we can’t ever get rid of stress. But I think what we all could benefit from is learning how to deal with our stress better. And for me, that was the probably the hardest bit of this. I know everybody says diet is you know, that’s the hard thing. How do you give up meat and cheese? Well, that’s pretty easy actually, to be honest, learning how to sit with your thoughts for half an hour a day and meditate and engage in stress reduction practices and exercises building self compassion and kindness towards other people that did not come I can tell you it did not come easily for me as a Western trained doctor who used to live life in the fast lane and has prided himself on being very busy all the time. Actually sitting and experiencing stillness and calm and peace was not something I really was comfortable with at all at the start but that is genuinely an under has been extremely important in the last year has been a just a huge thing for me. 

 

Catriona Williams  24:40 

I’ve learned this, this over the last 12 months or so is about, you know, the, you know, the buzzwords is being kind to yourself, isn’t it? And kind of to yourself to give yourself a break and to be that mindfulness. 

 

Dr. Jonathan White  24:54 

Absolutely. You know, I love the fact that you know mindfulness is now quite cool. It’s a bit sad. See, everyone’s heard of it because of all the apps and all of that sort of stuff. But actually it is foundation. It’s been around for at least 3000 years, but like yoga, you know, it was invented by Buddhist monks. But in my book, something’s lasted that long, it’s probably because it works, or it’s not a fad. And, you know, I think learning things like you know, non judgmental behavior, and acceptance, and equanimity, and all of these words that all sound a bit intimidating. But it’s just, it’s such a, such a better way to be, is learning to be a bit more kind to yourself. I think that’s the hardest bit for me, learning to be patient and being kind to myself did not come easily, and still doesn’t at times, if I’m honest. But I do work on it on a now to be honest. If I don’t meditate every day, which I do into every morning, I meditate for 20 to 30 minutes, then usually with a guided meditation, sometimes if I don’t do that for a day or two, I do really miss it. You know, at the start, it was a huge effort to make myself sit down. I didn’t, I was very restless. I didn’t enjoy it. One of the things, I wanted to look at my phone and school mindlessly through Facebook, because we’re all addicted to those sorts of things. But learning that is a is a hugely beneficial important skill. And the evidence behind meditation, mindfulness, specifically, in a whole range of health conditions is overwhelming. You know, in the last three years, I think they’re averaging 1500 papers a year. And big names in the health field you know, neurology and MS. Really good evidence base. But even in my own field of gynecology and recurrent pregnancy loss, there’s now evidence base for mindfulness. So it is, you know, there’s no downside to learning to deal with stress better. 

 

Catriona Williams  26:32 

It’s interesting that you said that you miss it. If you don’t do it, what is it that you actually miss from if you don’t do it. 

 

Dr. Jonathan White  26:39 

I think it’s a really nice way to start it for me if I did last night to fall asleep, so it was no good for me to do that. There are people who use meditation to fall asleep, but it’s slightly different purpose. So for me, if I did first thing in the morning, that really gives me a sense of I’m awake grounded, I’m starting the day with great intentions, what I want to get out of it, and what I’m hoping for and, and just just a sort of a bit of just a bit chilled, but more relaxed, accepting, yeah, whatever is coming, I can deal with that. That’s okay, don’t have to engage these things, I can just accept it. Let them wash by, you know, and it sounds a bit airy fairy right there. And for those who are skeptics, I love Dan Harris, who is a former newscaster on ABC in America who famously had a panic attack in front of 10s of millions of people, due to his PTSD of being a war correspondent and his substance misuse and things and he has started up a an organization called 10% happier. And he really, he is one of the most ardent skeptics of meditation you could ever hope to meet. But his take was very much like my own, you know, he, he says, you know, I hate hese words like loving kindness. So, for him, it was a kind of thing of loving kindness, being nice to people I don’t like it’s, it’s trying to be, I don’t want to be as much of a D-I-C-K as I used to be, you know, that. And that really speaks to me, you know, and you make it a bit more funny and entertaining. But at its simplest form, it really is. Yeah, it’s learning to just accept thoughts and feelings as they come and go. And I’m trying not to engage and get washed away by them. 

 

Catriona Williams  28:14 

And then moving on to medication, which I think is a fascinating one to actually mentioned, to be honest. 

 

Dr. Jonathan White  28:21 

Yeah. And I’m really glad to have the opportunity with an OMS hat on to talk about medication, I think that traditionally, some people have have thought that you follow OMS, because that’s an alternative complementary therapy. And, and if you do that, well, then you bother with medication and the two are complete polar opposites. Well, that really has never been true. And it certainly is not true. Now, you know, I personally take a disease modifying therapy. And, I also passionately follow the OMS program, and I don’t see any conflict of interest is awesome them, not us versus them. You know, the landscape of DMDs disease modifying drugs in MS has changed absolutely enormously in the last 15 to 20 years, you know, when George Jelinek was diagnosed, there were really two injectable drugs available. Neither were particularly effective. One of them had horrific side effects that made you feel like he had the flu for three days in a week, at least every week, and didn’t really have any long term data to support its use in preventing disability progression. So George, you know, felt, and I can understand why that really, we should be going and offering an other direction at some point here to say, let’s let’s focus on our lifestyle that was not to say don’t take the drugs, but just that they weren’t the be all and end all. Since then things have changed massively. The evidence base has evolved hugely. The more modern medications are much more effective. They have much better data on their long term safety on their relapse rate reduction on disability progression rates. And now we have treatments that are available for progressive MS, both primary and secondary progressive, which was unheard of even two years ago. So the landscape even since I was diagnosed has changed hugely And, and that’s really reassuring because the research base in MS is phenomenal. I think it’s important just to say, this medication is much bigger than saying I’ll take this pill or this infusion, you know, this is potentially a lifelong therapy that you’re going to engage in, that has monitoring parameters in the form of blood tests and MRI scans and regular appointments with your MS team. It means going through the process of regular scans, which can very difficult for some people in that horrible waiting period between scan and result, has my disease changed? Does this mean I’m getting worse? Do I need to do something different, it’s also often here’s a leaflet, make your choice. It’s quite often because of the necessity of healthcare at the minute that it’s not face to face. But it’s not particularly timely, that there isn’t the amount of time that’s necessary. And for many people, this is a very difficult and very personal choice. And I think we do at OMS to support anybody in their decision, whether that be to use medication or not. But it needs to be properly informed. And given the time and space and respect that it really needs. So it’s a big one. And it’s probably the most contentious issue that we deal with in our events that people just need help making that decision. They just don’t know where to go, they don’t know where to look out for reliable information. And there are so many sources of help and information out there. But you know, with everything, it’s it’s knowing where to look, and where to get the answers. 

 

Catriona Williams  31:22 

And I’m sure having your your circles brings a lot of comfort for people where they can talk about what worked, what worked for them. And I think people don’t realize, well, I understand why that works for that person. But that actually wouldn’t work for me because my lifestyle is completely different. 

 

Dr. Jonathan White  31:39 

I mean, my bit different stages of the condition and all of those things. And there’s also the wider issues of medications to amount of symptoms, which is a whole different topic and various supplements, you know, probably about 50% of people with MS will be taking some form of additional supplement, whether that be, you know, magnesium or vitamin D or what there’s millions of them. So, yes, absolutely. You need a reliable source of information to sort of brainstorm these and say, Well, what might work? What is complete hocus pocus? And you know that it’s important to filter that out. 

 

Catriona Williams  32:11 

Moving on then to family prevention. 

 

Dr. Jonathan White  32:14 

Yeah, and this is a really, you know, obviously, the first five things that we’ve talked about are the sort of day to day things that people need to do. You know, if you don’t have children or family members that you’re concerned about, then of course, this doesn’t apply to you. But for many people, this is possibly the most emotive and most important bit of it, you know that by virtue of me having MS, I have increased the risk of my two sons having MS. Exponentially. You know, by virtue of my genes, and it’s not truly a genetic disease, it’s important to say that it’s a very potent mix of lifestyle and genes, and probably the vast majority of your risk of developing MS is defined by your lifestyle. It’s estimated 75% lifestyle 25% is genes because there’s not one, MS gene, there’s about 200 MS genes, and it’s a sort of a very complex Jigsaw of all the pieces of you know, viruses you’re exposed to in early life, your vitamin D level, when you’re in the womb, whether or not you have a certain code of genes, what’s your diet, like? How stressed Are you what’s your vitamin D level in real life and all of those sorts of things. So it’s a very complicated thing. But it’s important to know that there are things that you can do that will massively reduce the risk of your family developing MS. So the big one is vitamin D, so ensuring that your family members have vitamin D level around 100 nanomoles per liter. So that’s the European and UK units that we use, we think there is evidence suggests would prevent 75% of MS cases. And that’s unbelievable. And the way that most people will achieve that is by taking preventatively so not having MS but taking vitamin D to do so about 5000 units a day. As I said before, perfectly safe for the huge majority of people. If you have specific health concerns like sarcoidosis or hyperparathyroidism, then speak to your doctor. But generally speaking, nearly any endocrinology or hormone doctors association will say that doses up to between 4000 and 5000 are completely safe anyway. So taking 5000 units a day, especially during the winter months when you won’s make any vitamin D is the first massively important thing. The other thing that’s probably quite important, in fact, I would argue is the most important thing you should ever do is to not smoke. So cigarette smokers are massively more likely to develop MS. And when they do develop it, it progresses significantly faster and it’s dose dependent. So the more you smoke, the worse it is and the faster it gets worse. So it’s massively important that your children, brothers, sisters are not smoking. If they are smoking lead them to the facts to show that why it’s so bad to smoke and potentially have an MS and also for their general health. And there are so many ways of stopping smoking. It’s you know, for example, in the UK, free from your pharmacy to get nicotine replacement therapies. So that’s a big one. Additional omega threes so the omega three fatty acids so the good fat healthy mono polyunsaturated fat that we are big fans of at OMS is flax oil from linseed or flaxseed and cold pressed into delicious buttery oil that we tell all of our OMSers to take it a dose of 20 to 40 mls a day. I personally take it in smoothies and put it in salads and salad dressings and mashed potatoes and these sorts of things. So you can’t heat it. It’s very fragile. But that is the thing that I’m trying to instill into my two boys at the minute on their crumpets in the morning and into things that they don’t realize because it filling your cells with omega three fats are good healthy fats rather than horrible, saturated animal fats, we think scientifically makes sense, a very effective way of preventing MS and also stopping it from developing and getting worse. So that’s the other big thing. The evidence about exercise is not great for preventing MS, you probably need to be doing an awful lot of exercise at the high level to prevent MS just through exercise. But obviously exercise is massively important, as is managing stress. I mean, I knew that my MS was brought on by particularly stress, I was always going to get MS. But it was brought on at that particular time due to a lot of stress at work in my life. I knew it was no new coincidence. And we know that relapses are very often happened between six and eight weeks after a major life event. Like it’s been documented for years and years and years. So stress is a massive part of this. And teaching our kids and our loved ones how to cope with stress is so important. So important. 

 

Catriona Williams  36:35 

All the things that you’re talking about, once again, don’t just apply to MS, they applied to so many other conditions. 

 

Dr. Jonathan White  36:41 

They apply to everybody, you know that, you know, all of these things are important for our families. And you know, I would hope that friends and family of mine who don’t have risk factors would see the benefits of this for their kids. You know, it makes perfect sense to me. And you know, one of the things that was really important for us is when we were young children it was trying to instill in them a diet that was similar to our own, you know, the diet, the OMS diets and specifically advocated for prevention, although it will do absolutely no harm. There’s just no direct evidence, but preventing MS gets harder to study. But you know, eating a whole food plant based diet as a kid with some additional seafood, it’s a brilliant way to start helping your palate flavors, tastes and interests. And you know, so our four year old is now obsessed with things like salmon and olives rather than chicken nuggets and pizza. And that’s, you know, I don’t think that’s a bad thing. I think that’s a really good thing. And if it helps prevent and develop MS. Well then guilty as charged. 

 

Catriona Williams  37:36 

I don’t know how we’ve all gone along for so many years, not understanding how important it is what fuel we put into our body.  

 

Dr. Jonathan White  37:43 

I read it recently that, you know, what you put in your mouth three times a day is is essentially either medicine or poison, or is your single greatest interaction with your environment is what you eat. And we just don’t think about it mainly because of convenience and busyness. And all of those things, we just we’re not eating food and reading things out of pockets that are made in factories, you know, that’s not actually food. And it’s not a bit of wonder that our general health is declining, and that we see rates of MS massively escalate in places that are westernizing. So for example, in Japan in the 1970s, they start turning started to see an explosion in their MS rates. And a lot of that we think is due to the reduction in the traditional Japanese style of living, you know, we’re getting much more plant based and fresh seafood and eating more Western things. And you see it all over the world that that it happens. You get these explosions, for example, in Iran is an MS hotspot like we think, yeah, especially in women. And we think that might be due to the very strict or Sharia law that was imposed in the 70s onto females living in Iran. So their vitamin D levels are much much lower because they’re inside or fully covered all day. So there’s huge amounts in our environment that affects our health. And it is, you know, your genes are not your fate. I love the phrase, you know, your genes, load the gun, but your lifestyle fires it, you know, so you might it might be loaded, but you don’t depress the trigger would be my take on that. 

 

Catriona Williams  39:20 

And then I think your last one change your life for life. 

 

Dr. Jonathan White  39:24 

So that’s a harder one really to sum up, isn’t it in a nutshell? How do you just totally you say to people just change your life and then do it for the rest of your life. But really what I think, to me, what really speaks about this is you have to get away from thinking that this is some sort of restrictive diet, because if it becomes a diet where you’re not allowed to eat things, I can tell you now you’re going to fail because that’s human psychology, because you’re putting things like chocolate and cheese and all of those things on a pedestal of accounting that or I can only have a tiny bit of that on special days and special occasions. And as that starts to happen, you have a little piece of chocolate you think, well that was okay, maybe we can have a little bit more You start to slide down a very slippery slope. So what I tried to do for myself to make this a long term thing is say, it’s not that I can’t eat this, I’m choosing not to eat this for my health. But as soon as you do that, I don’t look at this diet as restrictive in any way, I am far more interesting and enjoyably and from such a wide range of foods than I ever did before. So it’s not restricted in any way. But it is different. I never think about changing back. And if I didn’t have MS tomorrow, I can hand on heart say, I wouldn’t eat meat or cheese again, because I just didn’t have any interest in it. And I love that, you know, I meditate regularly. And I don’t think I would change that either. If I didn’t have MS because I knew that that’s massively important to me, no, and that has made me evaluate what’s important and what’s not important, and who’s important and who’s maybe not so important in life. And it’s, as we said earlier, it’s about maybe finding the people that support you to do that, because the psychology of change is so interesting. There’s a great book called Atomic Habits by James clear. And he talks about this team, Sky cycling team, you know, the, the idea that they brought their own pillows and their own duvets, because they realized that 1% increase in performance, etc. And when you add all those up cumulatively, it makes such a difference. And there’s a lot of stuff in there that I find fascinating. But one of the things that really stuck with me was, a lot of people don’t want to make change, because they don’t want to feel different and singled out so that anxiety provoking moment, when you go to a friend’s house and say, actually, I can’t eat that, or I won’t do that, or you go to a restaurant, you can’t find something on the menu that really gets in the way of you making change. Because we don’t like to single ourselves. Like it’s different. What we all want, whether we admit it or not, is to be part of a tribe. And for lots of evolutionary reasons, that’s important. So that’s where the support of OMS and the people that I knew there, and the other OMSers is so so important, because you’re not on your own, you are part of a tribe and something much bigger than just you. And then it’s not so daunting at all, actually. 

 

Catriona Williams  41:56 

But also things have changed. You know, even in the last 12 months, things have changed so rapidly about moving to being plant based. And the fact that you can also eat fish opens it up even even. I don’t think anyone would even notice. 

 

Dr. Jonathan White  42:13 

No, there. I mean, even look in supermarkets, plant based ranges have taken off Instagram channels, blogged recipe books, TV programs, you’re absolutely right. You know, there’s never been an easier time. You go to any cafe now And you say what alternative milks do you have? Nearly all of them will say, you know, soy, almond, coconut, all sorts of weird and wonderful things. When I first started, you were lucky to get soy milk anywhere. And now it’s, you know, oat and coconut and almond. And yeah, there’s so it’s becoming easier and easier once you get a routine. That’s the hard bit. The first time I went around Tesco was very scary and took a long time. I got very cross. But when I got home emptied all my old cupboards and refill them, and I find out what my new Monday night dinner was, and Tuesday and Wednesday, etc. And once you get used to those your staples, your new staples, then you will not look back, I promise. 

 

Catriona Williams  43:02 

No, no, that that’s great. And I was just gonna say that, you know, normally now, I was gonna say normally when I go out to friend’s house, but I’ve only just started going out again. But I have noticed that people do say, is there anything that you don’t eat or can’t? And it’s polite to ask people. 

 

Dr. Jonathan White  43:21 

It’s almost expected, you know, that says anything you don’t like or you don’t eat. Yeah, absolutely. And people are much more allergy conscious. This isn’t an allergy. So, you know, if you say if you’re in the restaurant, people always say, well, what do I do? If they say, well, there’s dairy in the kitchen? Well, that’s okay, you know, dairy in the air is not going to make your MS worse. You know, it’s not the same as an allergy. So yeah, tell them it’s for your health. But I’m not allergic. And actually, that makes the kitchen tend to relax a little bit because they don’t have to change all the, you know, all the chopping boards and all that sort of stuff. Because if you’re interested in all that we’re on all the social media channels on Facebook and Instagram and YouTube. Our new website, as Catriona said, has is evolving rapidly. We also have our new strategic goals strategy for the next three years if you’re interested about seeing where OMS is going to go and hopefully we’ll get to engage with you. Thank you for the opportunity to talk to you today actually has been great. 

 

Catriona Williams  44:13 

It’s been really nice. Thank you very much for your time, Jonathan. It’s very kind of you. 

 

Dr. Jonathan White  44:17 

Thank you very much. Absolutely. 

 

Overcoming MS  44:22 

Thank you for listening to this episode of living well with MS. Please check out this episode’s show notes at overcoming ms.org/podcast you’ll find useful links and bonus information there. Don’t forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming MS community. Our theme music is by Claire and Nev Dean, our host is Geoff Allix. Our videos are edited by Lorna Greenwood, and I’m the producer, Regina Beech have questions or ideas to share? Email us at podcast at overcoming ms.org. We’d love to hear from you. The Living Well with MS podcast is for private non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. or medical advice please contact your doctor or other licensed health care professional