← Living Well with Multiple Sclerosis
Living Well with Multiple Sclerosis
Bonus from the archives: Overcoming MS is possible with Professor George Jelinek | S7 bonus
00:32:13
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- [00:00]
A
I think the real change is going to come when we have enough evidence to convince clinicians that lifestyle is the key and when more and more people are prescribed that as a definitive mainstream therapy for this condition. I think that's our best chance of actually making a big impact on a population basis for this disease.
- [00:26]
B
Welcome to Living well with Ms. This show comes to you from Overcoming Ms. Ms, the world's leading multiple sclerosis healthy lifestyle charity which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own. Don't forget to subscribe to Living well with Ms. On your favorite podcast platform so you never miss an episode. And now let's meet our guest. Today's episode is a replay from the Living well with Ms. Archives. We're revisiting some of our favorite episodes from season one. These early episodes break down the Overcoming Ms. Program and feature doctors, facilitators and community members with top tips and personal stories about living well with Ms. You can listen to the entire back catalog at overcomingms.org or wherever you listen to podcasts.
- [01:29]
C
The Living well with OMS podcast is designed to help you better understand and adopt the OMS seven step program. Whether you're new to it, you're an experienced OMSer or someone who wants to find out about what options are open to them for living a better, healthier life after being diagnosed with Ms. I'd like to introduce our first and most would agree, our most high profile guest, Professor George Jellinek. Professor Jellinek is the founder of OMS and was until very recently the head of the Neuroepidemiology Unit at the University of Melbourne, Melbourne. Before his work in neuroepidemiology, he was the first professor of Emergency Medicine in Australasia and was awarded the ACKERMAN MEDAL In 2003, the highest individual honour in specialty of emergency medicine in Australia and New Zealand. Since moving to neuroepidemiology, he was appointed Chief Editor in Neuroepidemiology for the leading Medline index neurology journal Frontiers in Neurology has been recognised by the mainstream by twice being a finalist for Australian of the Year. Professor Jelinek had already lost his mother to Ms. And 18 years later was diagnosed himself, but resolved as a qualified doctor to study all of the available medical literature to find the best way.
- [02:36]
A
To live with Ms. My background really that's relevant to this is mostly about Ms. And the fact that like many of the People listening. I was diagnosed with Ms. For me, it's quite a long time ago now. It was in my mid-40s at a period of my time, my life, when I was really busy, really flat out at work and really wasn't paying terribly much attention to my health. And like a lot of people, again, who are listening, I had a close relative with MS, and my mother died of the illness at 58. So, being a medical doctor in practice in the emergency department, I. I knew what to expect after a diagnosis of Ms. So I was understandably pretty devastated. And I really couldn't see any future for myself after that diagnosis, and certainly no way out of what looked to be an inevitable decline into progressive disability. But fortunately, I. I was in academic medicine, and one of my jobs was to judge the worth of scientific literature and scientific research. And I was an editor of a major journal, and it gave me the tools to actually look through the medical literature. And, I mean, I didn't initially feel there was any hope at all. And it was a number of sort of serendipitous events that led me to actually have a look at a couple of the papers that were in the literature. And I found Swank's paper very early on. And then that really opened up a Pandora's box of just paper after paper after paper that within a matter of weeks convinced me that I could potentially stay well if I could change my lifestyle. And that's what led me to put the IMIS program together. And that's what's led me to be, well, nearly 20 years on, I'm actually as fit and well as I've ever been in my life right now.
- [04:42]
C
And so what do you mention? You mentioned Spank's paper there? What briefly, was that research?
- [04:50]
A
Well, I think that's. Although it's given very little airtime by most clinicians in the area, I think that's a pivotal piece of research in the Ms. Literature undertaken by no lightweight in neurology. I mean, Professor Roy Swank was a professor of neurology finally at Oregon, but in a number of other universities along the way. And he devoted his life, really, to studying his hypothesis that animal fat was the driving force behind people getting Ms. And behind their progression. So the paper he studied, the one I found initially, was a study in the Lancet in 1990. And for those of you who are familiar with the medical journal hierarchy, the Lancet's right up there. It's one of the big four medical journals in the world, highest ranked.
- [05:45]
C
It's the one that I'VE heard of.
- [05:46]
A
Being medical, so yeah, I guess being a Brit too. It's published out of the UK and it's a long standing journal, huge impact factor, publishes the best research in the world. And to see this paper published in the Lancet actually surprised me when I read its content. Because what Swank had done was this extraordinary study over 35 years where he'd followed 150 people with Ms. Who he had asked to stay on a dramatically reduced animal fat diet and compared those who were able to stay on the diet against those who were unable to stay on the diet and found that those who could reduce their animal fat, their saturated fat intake to an absolute minimum to below about 15 to 20 grams of saturated fat a day. That compares to maybe 100 that most people in the west are eating per day. Those people had dramatically better outcomes and the great majority were fit still at 35 years after a diagnosis, whereas the majority who couldn't stick to the diet were either dead or bed bound. And I looked at that and thought that is pretty compelling evidence, even if it wasn't conducted in the way most modern trials are conducted. Of course, it started in 1949, so how could it be?
- [07:10]
C
I mean, yeah, I personally find a little bit of frustration about the way that they have to do medical testing. And how do you do a double blind placebo when you're asking someone whether they're eating beef or not? It's a fairly big giveaway if you are. All right.
- [07:31]
A
It's actually a thing that's perplexing us at the moment. In the research unit at the University of Melbourne, we're trying to put together a randomized control trial. And to do it in a way that satisfies the critics of research is really difficult. I mean, it's really simple to get two groups of people randomly allocate them to take either an active pill or an inactive pill. I mean, how easy is that research design? It's very easy to trick people into believing they're taking something that might be helping them and therefore account for the placebo effect. But how do you do that when you're asking people to make very significant lifestyle changes? And I mean, they're aware of what they're doing, the researchers are aware of what they're doing. It's almost impossible to adequately blind that or mask that from either the participants or the researchers. So we're struggling with all of those methodological issues at the moment in trying to get this kind of study up, because frankly, most researchers in the area, even Though the research is congruent and very comprehensive to date around diet, they won't be convinced until they see evidence of that kind of gold standard.
- [08:47]
C
And so recently I saw that you'd stepped down as the head of the neuroepidemiology unit. So I just wanted to ask, why did you step down and what are you going to be doing next?
- [08:56]
A
I've actually only been there three years and it's been a fantastic three years. I really enjoyed this shift in my career away from unloading ambulances and helicopters at the front door of major hospitals, to actually getting paid to come to work, to think and to really make a contribution to the intellectual scientific endeavor in medicine. And it's been fantastic. But I guess I'm the first to see that. I'm not young anymore. I'm 64. I'm certainly fit and healthy and well. And one thing I am aware of is how quickly that can change for people. Having seen that across my career and the sort of people who come to emergency departments. And I really do want to make sure that I leave myself plenty of time to enjoy all the things I want to do in life in addition to doing this really important work. So basically I cut my hours down by about a third and at the same time I thought it was really in the interests of the unit to have a bit of renewal and have our deputy head step up and take on directorship of the unit. And that's going to bring a whole infusion of new ideas and ways of doing things.
- [10:06]
C
And so the research will continue?
- [10:08]
A
Yeah, it's going to continue, but the thrust of it is still very much around researching the factors that impact on the progression of Ms. And also increasingly the prevention of people developing Ms. In the first place.
- [10:25]
C
To come on to the overcoming Ms. Approach, could you give me a quick overview of.
- [10:31]
A
Yeah, look, I. I've put it together in the most recent book, which was released in 2016 as a seven step program, really to try and give the impression in the sense that it's not a difficult thing to do, it really is, is a fairly simple stepwise approach. And I've put the steps in order of what I think from the literature are probably the most important things in, in the hierarchy. And most importantly, diet in my view really comes at the top, even though there's some debate around that by the clinicians in the area. Essentially, a plant based whole food diet plus seafood is the diet that comes out of the literature as being the most helpful for people with ms, both in preventing the illness, but More importantly, once you have it in, reducing your chances of it progressing and the rate of it progressing. The second is getting adequate sunlight and or vitamin D. And in many parts of the world, like Melbourne, where I'm sitting right now, and there's big thick thunderclouds rolling overhead in the middle of winter, you don't get a lot of vitamin D by going outside. Mind you, I was out in the pool today doing a kilometre and a half in what was then sunshine. The UV index was only about 1 or 2, so I didn't get a lot of vitamin D. So most people need to supplement with vitamin D as well. But there seems to be some independent benefit from both direct sunlight on the skin and vitamin D supplements. The third is exercise and regular exercise. I think this is probably the most proven of all the therapies in ms, and there's now a wealth of literature to show that most particularly it influences quality of life. So people who exercise regularly in properly constructed randomised control trials have better quality of life. They also have less depression and less fatigue. And we've recently published a review from our unit to show that the trials indicate that one of the best therapies for fatigue is exercise. And meditation is another really helpful one. You know, it's exercise of all sorts and whatever's within the capacity of the individual. Obviously, some people are more disabled than others and so they'll need to get a particularly tailored exercise program. The fourth element is meditation or some other form of stress reduction. And we at OMS generally recommend mindfulness based stress reduction, mindfulness based meditation, because it's so mainstream, well proven and there's good work in Ms. On it. But there are other techniques too, and some people choose to use other forms of stress reduction, things like yoga or Tai Chi and so on. It's been a little bit of a problem that mainstream Western medicine has, despite the wealth of scientific research behind it, has found it has been rather reluctant to embrace meditation as a form of medical therapy. And I think that the pioneering work on all of this came from Jon Kabat Zinn in the us, and he's actually been running mindfulness based stress reduction clinics at one of the big hospitals in the US since the 1970s now and published a wealth of data on it. But in MS, there's a number of really good trials on it. Grossman from Basel. They did a proper, well constructed randomised controlled trial, 150 people with Ms. Randomised to usual care or usual care plus mindfulness based meditation, and found much better quality of life, less Depression, less fatigue for those who were able to sustain the mindfulness based meditation, and that persisted to the six month point at which they concluded the study. So more recently there's been an online version of that which published in Multiple Sclerosis Journal to show that it's effective when it's done online as well. So I think now there are something like two and a half thousand papers on mindfulness meditation in the medical literature showing some benefit in various different conditions, particularly in chronic disease. So I think we can safely say there is a strong evidence base now behind meditation and it's a growing evidence base. And the next one might actually warrant a comment as well from you, Jeff, in that it's taking medications if required. I know that a number of the other groups around the place who advocate a sort of healthy lifestyle approach to managing Ms. Don't recommend taking medication, but my view has really always been if something has been shown to work, then why wouldn't you do it? The only caveat for medications is the issue around side effects. So what we've described so far that the first four pillars of the program all have positive side effects. There is no negative side effect to eating healthy, to exercising, to meditating, to taking vitamin D and so on. But with medication, it's a real question of one, do you need to take it? As in, are the other elements of the program sufficient to keep you well, or do you need something as well? And if so, which one should you consider taking and when? And they're really important questions. And at the moment there's a bit of a rush to get people onto medications by mainstream neurology. But I think largely that's because there's not a good appreciation of the value of lifestyle in achieving stability for people with Ms. So if you've only got one real tool to apply, then naturally people want to use that tool immediately and get people onto it quickly. But actually for most people with ms, there's being such a chronic condition, there's plenty of time to give this adequate thought and consideration before rushing into a medication choice. Let me just say one of the key things about our program is that it is mainstream. It's not an alternative medicine program or a complimentary medicine program. It's a mainstream secondary prevention approach to managing Ms. And I mean, the best example that illustrates that is that our neuroepidemiology unit that's researching this approach is located within the School of Population and Global Health, within the Faculty of Medicine and Health Sciences at Australia's leading university, the University of Melbourne. So it's very clear that we're operating from within the mainstream of medicine and not from without it.
- [17:24]
C
On my initial diagnosis, obviously you go to Google being your primary resource, and so you realize, okay, this isn't someone trying to take my money. They're actually trying to make me better.
- [17:36]
A
Yeah, I've felt that strongly since Rock. Well, you know, as soon as I got involved in this and realized I needed to make it public, I mean, I had my own little formula stuck up at home on the fridge for how I was going to live the rest of my life, and started to feel increasingly guilty walking past it every day thinking I'm the only person who knows about this. And there are so many people out there who will never know about this because they don't have the same sort of skill set that I had to look at the medical literature. So I thought I really have to bring it to people's attention. And I was really totally Internet naive in 1999, as probably a lot of the world was. And so the only way I could really think of doing it was to write a book about it, which was the first book that I wrote, Taking Control of Ms. And subsequently our group has set up a charity, not for profit, charity. And one of the key things about it is that we make this information free to everyone wherever possible. We. Yeah, it's a central core principle of oms, that this information is free to all comers. And it's the very least I feel I can do for the. For the Ms. Community.
- [18:47]
C
So that was. Where did we get to five? I think.
- [18:50]
A
Yeah, we got to five. So six was and is preventing family members getting Ms. And this goes back to the issue of genetics in Ms. And there's no question that the first degree relatives of people with Ms. Are at significantly higher risk of getting the disease. So it's somewhere between 20 and 40 times higher risk than the rest of the population. And obviously that depends on where you live, what the background risk is. But say you lived in Canada or something where the risk might be as high as 1 in 300, that takes it up to a very substantial risk. 1 in 20 to 1 in 40 times that risk gets you up to maybe 1 in 15, 1 in 10 for the children of people with MS, but also not to forget the brothers and sisters of people with ms, because I can't tell you how many times I've talked to someone with Ms. And then found out years later that one or even two of their siblings have subsequently been diagnosed when potentially they could have reduced that risk very dramatically if they'd known about what to do. And that's why I put this in the book as one of the sort of key steps to try and influence those around you who have a higher risk to make some changes. And the changes are really simple. There's now a pretty strong body of evidence around this, around not smoking, around getting adequate sunlight, particularly when children are between the ages of 6 and 15, making sure the vitamin D level is adequate, even if they're not getting enough sunlight. You can do that through vitamin D supplements, getting enough exercise. And that's been shown in independent studies to modify the risk of getting Ms. And the last one, which is a fairly recent one, is plant based omega 3 consumption has been shown to influence the risk. So not fish oil, but what we've been sort of advocating right from the beginning, flaxseed oil or other plant based Omega 3 supplements have been shown to reduce the risk of getting Ms. So it's fairly simple and probably more easily. Someone could adopt the whole OMS program if they felt so inclined and they would tick all those boxes and give themselves really the best chance of not.
- [21:20]
C
Ever getting Ms. My neurologist actually said, because I've explained what I'm doing, and he said, well, it's not proven in any way. He actually calls it the Jerlanek approach. So he is aware. And. But he said at the end of the day, this isn't proven for multiple sclerosis. But if you have a whole food plant based diet and you are doing meditation and you're keeping your vitamin D levels up and you're doing exercise, then your risk factors for basically all of the western diseases and illnesses will be lower. He said you've got a lower chance of getting cancer, heart disease, and so on and so on and so on and so on. So he said ultimately, if you're happy doing it, there is no downside.
- [22:11]
A
Absolutely right. And the little bit that's missing in your neurologist's understanding is that he hasn't or he or she hasn't yet seen the link between Ms. And those other diseases. That what our group has long postulated, that Ms. Is really another one of those typical western lifestyle diseases like cancer, heart disease, high blood pressure, type 2 diabetes and so on. And the evidence is now growing by the day that it's just another typical western disease and that the same approach as we adopt for those other diseases will make a difference both to your risk of getting this disease and of it progressing just as it does with the other Western diseases.
- [22:56]
C
And I think we've got one left.
- [22:58]
A
Change your life for life. The point I was trying to make here was that this is something exciting to do. It's not a burden. Sometimes it takes something really big, like a serious diagnosis to give you the impetus to make big changes to your life. Because many of us just kind of plod along and we can notice ourselves getting unhealthier, our life perhaps not being all that enjoyable and so on. But a serious diagnosis like this actually gives you a bit of an excuse to say, okay, I'm going to make some really big changes here and I'm going to see what I can achieve in my life, in my health. And I've actually found personally that I feel I'm living a much better life, a much more authentic life, a much more enjoyable life. I feel healthier, happier than I really was 20 years ago before I was diagnosed. And the really important second part of that equation is it's for life. It's not a diet or a sort of a fad. This is actually something you change and you never go back. And there's every chance that if you can make those changes and then sustain them for life, that you'll live a long, healthy, happy life, just like most people, you know, aspire to.
- [24:20]
C
We've talked about lifestyle factors and mainstream medicine, so do you think it's likely that lifestyle factors will come into mainstream treatment?
- [24:28]
A
I think there's absolutely no question, Jeff. I was invited to that workshop which is run by Ms. Research Australia, which is the peak body for Ms. Research in Australia. I think they allocate somewhere around 15 to 20 million dollars worth of research funds every year, Ms. Research in this country. And they finally really have reached the point where they've had such a clamoring from their consumer base and the evidence has been piling up about lifestyle to the extent where they actually felt they had to convene a workshop to bring together what they consider were the best research minds in the area to talk and discuss how we might progress this research agenda in this country. And earlier in the podcast, I was talking about the difficulties we're experiencing in trying to put together a randomised control trial around this. And actually we're able to. I spoke a lot about that at the whole day meeting, and we had some of the leading researchers in ms, not only in Australia, but in the world there who were able to provide a number of. And in fact, a number of them have agreed to collaborate with us on the research that we're progressing with. So I Have absolutely no doubt, as I said on the day, this is an idea whose time has come. And it's just a question now of building the appropriate research and evidence base that will enable it to be translated into clinical practice. And I think that I can reasonably say within my lifetime I would expect many aspects of this to be standard practice. I mean, a number of them already are. You know, when I first started talking about vitamin D, it was thought to be a little bit weird, a little bit wacky. It's pretty uncommon now for someone to visit a neurologist with Ms. And not have their vitamin D level tested and not be talked to about vitamin D supplements. Similarly, with smoking, I mean, that really 19 years ago wasn't on the radar. Now, I think most people would have that discussion with their neurologist if they happen to smoke or if there's smoking in family. I think the key one that might take a little while is diet. And for some reason, neurologists seem particularly resistant to the idea that diet might affect brain disease, which seems a little odd to me because I've spent a lot of my career treating people with stroke and the key determinant of whether or not you're at risk of stroke is the diet you eat. That's like other vascular disease. That's the key risk factor. So it seems a little bit like a blind spot for many clinicians in the area currently. But I think with perseverance and putting together the right sort of research, we can get to a point where people are confident to prescribe diet as an appropriate therapy for people with Ms.
- [27:21]
C
Okay. I think there's a lot of resistance amongst patients as well. I find that with diet I think they'll accept most of the other things, but if you take their cheese away, find pizza quite an easy thing to get. There's pizza restaurants everywhere. Most of them freshly cook it. And if you ask for a pizza which is freshly made, whole food, plant based, then you can kind of tickle the boxes and actually out. But then they say, oh, you don't want cheese? I said no. They go, ah, but we've got vegan cheese. It's just really nice without cheese, you know?
- [27:57]
A
Yeah, absolutely. And there's no need to eat fake cheese, fake meat, any of the fake products, because the OMS diet is so enjoyable in its own right. And actually most people find that after they've been on it for a while, they really wouldn't go back. For me, nearly 20 years on, I can't bear the smell of meat, either cooked or raw. And I certainly wouldn't go near cheese. I really couldn't bear the thought of putting that in my mouth. And I think a lot of these things are just habits. You know, we think that we really like something, but actually we're just habituated to having certain things. And once you change the habit, the new habit's just as hard to break as the old one. It's a bit like putting a spoon of sugar in your tea and then stopping and you find, you know, you couldn't bear having sugar in your tea anymore.
- [28:43]
C
You've done a fantastic job of summarizing the approach. I've been through a couple of editions of the book and sort of realized that it's not set in stone. This is a continual research, and things change. So I just wanted to ask, where do you think there might be developments and is there any sort of latest news in the approach?
- [29:04]
A
One of the things about our approach is that it's evidence based, it's science based, and the nature of science is that it changes as new evidence comes in. I mean, you have a hypothesis and then you challenge it, and you often have to refine it. Over the years. It's interesting how little really has changed from the original. Certain things have, but they're relatively minor in the scheme of things. The biggest breakthroughs aren't going to come in some new drug or in some particular little molecule that turns off a signaling pathway or things like that. I think the real change is going to come when we have enough evidence to convince clinicians that lifestyle is the key, and when more and more people are prescribed that as a definitive mainstream therapy for this condition. I think that's our best chance of actually making a big impact on a population basis for this disease, not only in changing the face of how people progress, but in actually reducing the incidence of it. I mean, it's conceivable we could drop the incidence of this disease at least by half or two thirds if we target the people who are relatives of people who have the disease and encourage them to make lifestyle modification. I mean, I think that's where we actually have the biggest possibility of making a change to this illness. I know a lot of the organizations talk about searching for a cure, but it's a bit like saying, well, what's the cure for heart disease? It sort of seems an absurd question these days given what we know about heart disease. Sure, people have surgery for heart disease and they have medical therapies for heart disease, but we know we can prevent it and we know we can stop it progressing if people make really significant changes to their lifestyle. And I think actually that is the answer in Ms. As well.
- [31:07]
C
I'd like to thank you for your time and that's been a fantastic summary of the OMS approach.
- [31:15]
B
Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.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 music is by Claire and Mab Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer Regina Beach. Have questions or ideas to share? Email us@podcastvercomingms.org we'd love to hear from you. The Living Room with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical medical advice, please contact your doctor or other licensed healthcare professional.