We are delighted to welcome back Professor George Jelinek for a webinar as part of our 'Finding Hope with Overcoming MS - Webinar series - Season 4'. In this extended session, we asked him your questions about Living Well with MS and the Overcoming MS Program.
This webinar was recorded on the 11th July 2023.
Sian Southward 0:57
Hello and welcome back to the Finding Hope with Overcoming MS webinar series season four, we are thrilled to be bringing you today's session with Professor George Jelinek who developed the Overcoming MS program and also founded the Neuroepidemiology unit at the University of Melbourne.
My name is Sian Southward, and I'm the head of programs joining you from the UK. In a moment, I should be welcoming in George, and also my colleague, Liz who will be helping me on the stage to facilitate some of your questions. Before I do that, I'd just like to run through a bit of housekeeping, just to note that the session is of course being recorded, and you will receive a link to the recording within the next week. You'll also note that because this is a Zoom webinar, there isn't an audio or video component for webinar participants. But you do have the option to submit your questions on the q&a tab on your screen. Please note that questions should be kept quite generic, as George will not be able to comment on individual circumstances or diagnosis. If you do experience any technical glitches, we just recommend logging out and logging back in. So try leaving the webinar and coming back in and we recommend using the Chrome browser. Also, we try to make the webinar as accessible as possible. So there are closed captions at the bottom of your screen, you can turn them off by clicking on the three dots. And so you can turn off the subtitles. Also, as you exit the webinar, there will be a short pop up survey. So we do really appreciate your feedback. The webinar will run for approximately an hour and 15 minutes. But please do appreciate that Liz and I are not medical experts. So we may struggle with some of the pronunciation. So please do bear with us. What we will do is we will run through some of the pre submitted questions that we've already received. Because we do appreciate that not everybody is able to join us live that those that can very welcome. And so without further ado, I'd love to welcome both Professor George Jellinek and my colleague Liz Waters to the virtual stage. Good morning. Good evening to George. How are you, George?
George Jelinek 3:19
Yeah. Well, thank you. Thanks very much for having me on.
Sian Southward 3:23
Well, we're really pleased to have you joining us. We sort of said as we before we came on live, I shared with George that we've had such a huge volume of people registering for this event. In fact, it's the biggest number we've ever had for webinars. So people are really excited to hear what you've got to say and obviously to be able to submit their questions to you. So welcome. What time of day is it there for you, George, just to put it in perspective for people
George Jelinek 3:52
Just after 7pm here on the east coast of Australia.
Sian Southward 3:57
Lovely. So we'll be running for about an hour and 15 minutes. And like I said Liz will be helping in the background. Also with asking questions. So without further ado, are we happy to crack on? Great. I'll hand it to you Liz.
Liz Waters 4:15
Hello, George, how you doing?
George Jelinek 4:17
Oh, well. Thank you.
Liz Waters 4:19
Privileged to have you on board today. We have got a lot of questions for you. Are you happy for me to kick off with the first one?
George Jelinek 4:26
Yeah, let's get going.
Liz Waters 4:28
Let's get going. Okay. So first question, is there any data for Overcoming MS outcomes comparable to the figure for Swank data in your book and that is the effects of fat consumption on early, mildly disabled and severely disabled patients in the Swank study? And is there any data to show how long on average it takes for people to see an improvement in their symptoms upon following the Overcoming MS program? So two part question really, isn't it?
George Jelinek 4:56
Yeah, no, that's okay. It's a tricky question to answer. Because, of course, there are a whole lot of different levels of data. And much of the data that I have isn't available publicly, of course, because I know so many people who are on the program and have come to retreats, and who check in with me from time to time and I get to hear about their progress, and how things are going well, they email me with a question, that sort of thing. When it comes to the more publicly available data, and the research data, we've got data from the Neuroepidemiology, and particularly from two studies, the HOLISM study, and the STOPMS study. Maybe if I start with the second one, the STOPMS study is pretty interesting. That stands for Studying Outcomes for People Attending MS retreats. And this a big group of people we've been following right since the first retreat in 2002. That's actually the next 15 years’ worth of retreats, all the people who came to the retreats held in Australia for that time, we monitor their quality of life, but in a subset we monitor what they're eating, how much they're exercising all the kinds of aspects to the program. And we look at whether they adhere to the program, and what's been happening with a disability, and depression and fatigue and a few other things. And it's interesting to know that in that group, and we've published two papers, or perhaps there's only one in the literature so far, now, there's two that are published around the quality of life one around that small subgroup with the more complete data. And that second study shows that at least three years after retreat, for that whole group of people, the disability of that group had not changed from when they attended the retreat. So while some people might think, well, that's not a particularly positive outcome, the typical trajectory we know for MS is that that natural history is that disability would have worsened across a big group of people with MS. So that's quite heartening information. The HOLISM data is rather different, because in HOLISM, we're looking at about two and a half thousand people we started with in 2012. And looking at all their lifestyle habits, and then their disability, fatigue, depression, quality of life, relapse rate. And, in fact, we've just had a paper accepted in the European Journal of Neurology, which is one of the preeminent neurology journals to show, particularly around diet, that people who have a higher quality diet at the beginning of that study, at the 7.5 year follow up mark, and we follow them up every two and a half years. At the seven and a half year mark, the people with the higher quality diet have considerably less disability than the people with a lower quality diet. So it's not exactly studying people who are on the OMS program. But a good deal of that cohort is on the program. And we can actually see not whether they're on the program or not, but exactly what they're eating. And so it's a really important thing to say that this, the referee, who looked at that paper for European Journal of Neurology said, this is a really significant contribution to the literature, it's actually pretty close to the highest level of evidence we can get to look at what people are eating now and see how that affects their disability seven and a half years later. And we can say, categorically, in this study of all those people, that if you had a better quality diet at baseline, the best quality diet in MS we know is the OMS diet. And that's been shown in a couple of studies. If you've got a better quality diet, you have less disability at seven and a half years. That's as far as we've got with that research study. And so it's not exactly the kind of data that Swank had and not exactly the sort of thing that that person who asked the question may have wanted, but that you have to go from several different angles to get at the truth. And what I've always said as a long term researcher is that there is an objective truth around this. That every study you look at is a window on that truth. If it's a really good study, it's a more clear window on the truth. If it's an average study or poor study, then it's a pretty hazy window on that tree. But really, the studies are all lining up whether they're good, bad or indifferent. They're all saying pretty much the same thing that if you have a high quality diet, you're less likely to be disabled.
Liz Waters 10:23
That's a really exciting time, isn't it? Because as you say, and I think the key thing here is they are long term studies. So they take a lot of time. And obviously, it's reliant on people self reporting outcomes ongoing. So you know, seeing those results come in is really exciting. For anybody who's not familiar with HOLISM, or STOP MS whereabouts can they find those studies if they want to read more?
George Jelinek 10:49
Look, there's a few different ways, obviously, the website overcomingms.org is a pretty good place to start, because they have summaries of a number of the studies on there. The other place, if you're more inclined to look at the actual data, and if you've got a bit of a science background is PubMed, of course. So if you've put PubMed into Google that will bring up the website. I find the easiest way to get these studies is just to type my name because I'm an author on all of them. So if you type Jelinek, G in the PubMed, you'll see all of the HOLISM studies come up, as well as all the other studies that we've done over the years. And you can work your way through that. And each one of those, there's an abstract, which summarizes the findings as the thing that comes up if you click on each link. So there's, there's a huge amount of data there. Probably, I think, now from the any year was published in the vicinity of 75 papers, in major scientific journals over the last eight years. So there's a wealth of data now. And it's not just about the things that people immediately think of: disability, quality of life, but also fatigue, depression. But there's some more qualitative work there around people's motivations for adopting diet, their experiences going to retreat. There's some really interesting stuff about mastery, the sense of mastery people get when they're fully engaged with the OMS program. And mastery seems to correlate, surprise, surprise with better health outcomes. If you feel you're more in control of your health. So there's some there's some really good stuff to go through if you want to look into it more data.
Liz Waters 12:43
Great advice. Thanks, George. Our next question is, if MS symptoms are very minimal, by the age of 60, is there still a chance for secondary progressive MS or disability?
George Jelinek 13:00
The short answer is yes. But there's a very long answer, of course, the chances are relatively small. And much of that, it would appear from what we know from our cohort and the people we talk to, and so on. Not from hard research studies. But from that sort of data, that you're very unlikely if you're adhering to a really healthy lifestyle, particularly something like the OMS program where you've got multiple different things working in your favor. If at that stage, you have very mild symptoms, you're adhering to a lifestyle program, whether or not you're on medication, it seems pretty unlikely that you'll deteriorate further from there into a progressive form of the illness. There may be some further slight deterioration in terms of disability and so on. But even that doesn't seem particularly common once people reach that age. And there's some pretty good reasons for it really, because as we age, our immune systems start to get less active. Now, that's not so good in some ways, because it means you're more likely to get certain infections and things like that. But the immune system is the driver of the inflammation, and hence the damage that occurs to brain cells in MS. And as that becomes less active over time as people age, there's less actually fewer relapses, typically less progression of the disease as people age. So that combined with the fact that people may well be doing a number of very healthy lifestyle behaviors means that the risk is very small at that stage.
Liz Waters 15:04
Fascinating. Thank you so much. And my last question for now, are there any foods that you consider which you consider helpful you myelination?
George Jelinek 15:17
In a specific sense, probably not. The real issue with remyelination is that remyelination happens pretty much all the time in MS. So if people had damaged the myelin around their nerve cells, the various cells, that live in the nervous system that support the structure in the nervous system, migrate to those damaged axons and start to remyelinate. That process unfortunately, can get overwhelmed. So if people are have continuing damage to the meylin, and then that process runs out of steam, because it's been constantly, it's it's pushing a boulder uphill the whole time. The real key to remeylination is stabilizing the illness so that damage stops occurring. And that allows the natural repair processes to start kicking in full steam. Typically, the things that I think of when I think of the best environment for that to happen in the brain are omega threes, and polyunsaturated fatty acids. Because the brain is 99 plus percent fat, it's pretty much all fat. And the fat in the brain simply reflects what we eat. So if we change our diet, a month later, six weeks later, you can see changes in the fat composition of the brain. Now, I mean, we don't biopsy people's brains. But we know because, you know, people have had other cells in their bodies looked at particularly red blood cells. And you can look at the composition of the membranes that surround them when people change their diet. So you literally are rebuilding your brain all the time from what you eat. And if you rebuild it with fatty acids that formed the structure of the brain, that soft, pliable, less prone to being brittle and breaking like saturated fat behaves in cell membranes, then you've got a much better environment for remyelination, there's more chance for the cells to wrap themselves around the axons, for example, to move more freely in the nervous system. So my own sense of it is that getting the best structural basis for remyelination happens with essentially adhering to the OMS diet recommendations about Omega three and avoiding saturated fat. The other thing that you probably need to think about remyelination is oxidation, and the state of antioxidant in the brain so that where damage is still occurring around the myelin. A lot of times it will be related to free radicals being released in the brain. And antioxidants in our diet help to counteract that. So antioxidants I think people are familiar with - typically the things you sit in multicolored vegetables, fruits, berries, that sort of thing. And surprise, surprise, that's the OMS diet. So, you know really the OMS diet is the highest quality diet that currently exists in the MS space well shown in a couple of big studies. And that's the diet that is recommended to promote remyelination as well as stopping demyelination.
Liz Waters 19:05
So the main thing is no specific food but just embrace the Overcoming MS diet and the Omega threes and polyunsaturated fats and anti inflammatory foods.
George Jelinek 19:15
It doesn't pay to pardon the pun to cherry pick the foods you eat so that you try to highlight remyelination, it's much more important to embrace the whole concept of that plant-based whole food diet plus or minus seafood as people see fit and prefer but it's the plant-based nature that gives you the antioxidation the whole food nature to gives you the fiber and the other things that are that are critically important. And the lack of animal fat. That means you're you've got a preponderance of polyunsaturated fat.
Liz Waters 19:55
Great stuff. Thanks so much, George. I'll pass over to Sian now for the next three questions.
George Jelinek 19:59
Okay. Yeah, thank you,
Sian Southward 20:02
George, we get asked this question quite a bit actually, it's around your thoughts on intermittent fasting. And based on your thoughts, which would you which approach would you feel is the most appropriate? And the person who's asked the question has given an example of the 5:2, 16:8 What's your thoughts on that?
George Jelinek 20:25
Yeah, it is a question that's often asked, isn't it. And I know a lot of people are interested in this. Personally, I do do intermittent fasting. But I don't particularly adhere to one above the other, I don't believe there's actually sufficient data to suggest that one is better than any other. I think it's far more important if you choose to go that route, to adopt something that you're likely to stick to. And so if, for example, you find it easier, like I do, to not eat after dinner, or, you know, after you've had whatever you have, after dinner, stop, then go to bed and not have breakfast in the morning. So effectively have a 15 hour fast from the end of dinner till you have lunch, then that, I find that really easy. It's a no brainer. I do that seven days a week. That's too easy. But the additional bit that I add on to that two days a week is that I don't have lunch either. Now, some people will find that much harder. Personally, I don't, I find that on the days when I haven't eaten anything since the night before, by say three o'clock or four o'clock, I'm absolutely raring to go, you know, I feel fit, energetic clear in my thinking. I find it gives me a real boost. And I know, I know, that isn't applicable to a lot of people. A lot of people will find they get a bit foggy, or they feel they really are craving food and so on. So if that doesn't work for you, don't do it. Find another one that will work for you. And as you say, Sian, there's a whole host of them out there with I think, not a lot to choose between them in terms of effectiveness. But certainly, acceptability, they might differ quite a bit from person to person.
Sian Southward 22:30
Thank you. And you won't be surprised to hear that we've got quite a few questions around the diet. So on that note, the next question is, there seem to be many people following the Overcoming MS program with differing approaches, especially where the diet portion is concerned. What's your take on processed food if it doesn't contain saturated fat such as sweets, or even white flour? Is it better to completely abstain or is the occasional treat OK?, and what's your definition of occasional?
George Jelinek 23:06
Well, I guess the first thing to say processed food without saturated fat, even though it satisfies one aspect of the program doesn't satisfy the sort of major plank of the program, which is whole food. So it's a plant based whole food diet, not processed food diet, concentrating on the whole foods. Now, again, do that most of the time, as much of the time as you can, some people will find that it's inevitable that something a bit processed will come their way and it's not possible to avoid. Certainly if it's got no saturated fat in it, then it's not the principal culprit in this progression. But there is data, more and more data emerging now about the dangers of processed foods. And in fact, a big study released fairly recently looked at several major studies on processed food. People who had the most ultra processed, the very processed - the ones with 35 ingredients on the label. They're the people who had a higher cardiovascular event rate a higher death rate in the period of the study. So processed food has its own risks quite apart from what's happening in MS. Now occasional everyone's occasional is different, isn't it? It's a bit like asking a doctor how much alcohol you should have. And you know, an alcoholic is only someone who drinks slightly more than their doctor basically. As the joke goes. But I think I don't have a particular definition of it. I think if people want to get a sense of the different ways you can approach this diet, the best place I recommend you go is to the first chapter in the Overcoming MS handbook written by Jack McNulty, who's a Swiss chef, everyone would know Jack from the Ask Jack series. He talks about the different lanes that remained within the guardrails of the Overcoming MS program but offers slightly different approaches. And he runs through a little bit, the kind of so called treats you can have, many of which actually satisfy the program completely, if they're made well. So I hope that answers the question. So can you just excuse me one second, I've got a puppy scratching at the door. I'll just let the puppy in.
Sian Southward 26:03
As long as nobody expects me to answer the questions as eloquently as you.
George Jelinek 26:10
Good girl. Good girl. Come on right.
Sian Southward 26:14
Now we did joke, didn't we at the beginning, George that real life happens. And we'll get interrupted.
George Jelinek 26:22
Yeah, I have actually three of my well, two children and a partner downstairs, were looking after the puppies, but somehow they have eluded their grasp. So can I just bring the puppy up to the webinar so evryone can see her
Sian Southward 26:43
Numbers are just gonna shoot up now, George.
George Jelinek 26:47
I'll just pop her back on the bed.
Sian Southward 26:51
Actually, George, it was a lovely segue because you touched on alcohol. And so one of the questions that we had was about, do you advocate no alcohol at all? Or are there specific alcoholic drinks that can be consumed? Because there's been differing advice on alcohol include drinking it before 6pm. So this person would welcome your advice on that please?
George Jelinek 27:17
Well, I'm interested that there are still some concerns around alcohol out in the community, because the research seems pretty clear. And certainly the HOLISM research is very clear. We published that back in 2013, or 14, that when you look at that group of two and a half thousand people, the people with the best outcomes were those who consumed a moderate amount of alcohol. They actually had better outcomes and those who consumed no alcohol at all. And more particularly those who consumed a lot, they had very poor outcomes. There weren't a lot in our sample that did consume a lot. So it was a bit hard to get statistical significance around that. But certainly, we had showed a significant difference. Now, I'm not saying that indicates that we ought to promote alcohol as being helpful, but I think we can definitely say that appears from the literature. And I mean, as is just one of a number of studies in the area, all of them seem to show that there is no particular harm from moderate alcohol consumption. So when I say moderate, I really mean drinking within the guidelines in your particular area. You know, every area I think, is a little bit different, which is kind of funny, really, when you think about it, because the alcohol is the same everywhere. But certainly a glass of wine three to five times a week or a couple of glasses of wine - men seem to have a greater tolerance than women - is not likely to do any harm from the point of view of their MS. So I think that is should reassure people who do like the occasional drink. And also, I don't believe there's any data about when you consume the alcohol, but of course, I think if you're drinking earlier in the day, you need to be a bit careful that that can lead to more problem drinking, of course.
Sian Southward 29:33
Yeah, of course. So it's just consumption in moderation. Not around timings. Yep. Yeah. Thank you. Liz is going to join us now.
Liz Waters 29:46
Hello, here I am. There's a lot of love for the puppy coming in, by the way George. And I'm gonna jump to one actually on the alcohol theme so should we be avoiding non dairy foods that use lactose in their products? For example, some medicines have lactose, some beers, milk stouts use lactose is a sugar. What are your thoughts on that?
George Jelinek 30:16
The problems with cow's milk aren't do with lactose. So that's the answer to the question. Cow's milk is a problem because of a particular protein. And because of the saturated fat content, but the lactose part of it, which is a sugar, although it is poorly tolerated by some people who have a lactase deficiency. So many people find they get a bit bloated, and so on with with dairy products, but we avoid them - the dairy products - because of the other reasons, not the lactose for people with MS. So if there's lactose in other drinks, as long as they are, in other ways compliant with the OMS program, there's no problem at all.
Liz Waters 31:04
Excellent. So nothing to worry about, obviously just comes down to whether you can tolerate it or not.
George Jelinek 31:09
Liz Waters 31:11
Okay. Could you help by explaining why meat is not advocated on the diet? I'm sure it's to do with inflammation. But I would love to hear your thoughts on this and gain a clearer understanding.
George Jelinek 31:26
Again, this, this can be a really long answer. And I don't want to give you... just concentrate on one question for the rest of the night. I think it's fair to say if you come to one of the retreats, many people I've heard the story many times people pulling in to McDonald's on the way into the retreat, to have their last burger, or to the steakhouse to have their last T bone steak or whatever. Because they see it as as such a treat. So it's such a wonderful food. But by the end of the week, it's very rare for us to see anyone leaves still wanting to eat meat. It takes about a week to explain why meat is so harmful in MS. But there's a short answer is, one, it's about saturated fat. But of course, the general reply from people who still want to eat meat, is that yeah, but I can find plenty of low fat meats. So what about eating kangaroo or crocodile. And there's always a list that sort of pop up or chicken breast, or whatever. One of the issues about meat is that it assumes that status in our lives where it compels us to drive off the highway and go into a McDonald's is that our last, like our last meal. You know, because it's so important in our life. One of the reasons that that I chose when I put the Overcoming MS diet together to say meat is just out rather than the Swank approach, which is no meat, no red meat in the first year, then you reintroduce lean meat, you're allowed so much. It, it feels awfully like one meat is on a pedestal, that there's this thing that continues to have control over us. And we're allowed. This sort of authoritarian voice comes in that you're allowed to do this and allowed to do that we don't speak that way at Overcoming MS. We talk about recommendations for people, you're allowed to do whatever you you please, of course, you know, we don't look over anyone's shoulder and say he can or can't have this. But I found and many, many people who've been to the retreats have found that when they stopped meat altogether, it loses its power over you. It loses the hold it had on you. And it gets to the point where for me, you know I'm coming up for finishing my 25th year since diagnosis without eating meat. I find it repulsive. I mean, I can't bear to be in the same room as someone cooking meat. I walk past the barbecue restaurant and I have to go to the other side of the road. It's that smell of burning flesh of an animal that drives me nuts. I can't bare it. And what's happened is I've fundamentally changed my likes and dislikes. Because essentially they mirror what behaviors you have - your habits. So if you change your habits you'll find your likes and dislikes change in concert with the changed behaviors and meat actually starts to to slip out of your life as something that you look forward to that you revere that you pull into your last meal before you go to one of those damn retreats where they don't serve meat.
Liz Waters 35:06
This sounds to me, from what you're saying it's really about simplification and positive behavior change.
George Jelinek 35:16
Yeah, I mean, there's clearly the element of saturated fat. And you know, saturated fat is present in all meat, whether it's low fat or not, that's the sort of overriding issue. Saturated fat is a real problem for people with MS. But the second part of that equation, I think it's as important as the simple physics of what happens in your body. And that's what happens up here. And the way you approach your life, the way you approach this whole program, I mean, if this program is something that you're rebelling against all the time, that you feel it's an authoritarian voice in your life, forcing you to do certain things, it's not going to work. No one will stay on it, people would find it too hard doing it that way. But if you go into this, thinking, "I'm going to make really big changes to my life, you know, I got here, I got sick, because of how I'm living, I'm going to change the fundamentals about why I got sick, to try and improve my health care. And I'm going to change significantly, I'm going to be, I'm going to make a different body from the food I eat because I'm going to eat so differently. And I look forward to the enjoyment of learning about new foods and how to cook them and the new flavors I'm going to experience and I look forward to being healthy, I look forward to not having to worry so much about that crushing fatigue that I used to get, and so on, which is the common experience and the research findings around people who adopt this kind of diet.
Liz Waters 36:59
Excellent, thank you. Last question from me for now, are new white matter lesions over time common in MS and how is this likely to impact on MS progression?
George Jelinek 37:14
Yes, they are common in MS. Like, the thing to differentiate here is is the natural history of untreated unmanaged MS. And the natural history that we saw, you know, in the era of my mother, when she had MS, when there wasn't a treatment when there was nothing known about lifestyle you know, Mum, ate wienerschnitzel and lard on bread from the dripping tray and smoked till she died. And and her MS progressed really quickly. And that is the natural history of unmanaged, untreated MS. It progresses at different rates, depending on who the person is, and various factors in their lifestyle and so on. But the white matter lesions that you see on an MRI correlate with that progression. It's not a perfect correlation. Some people progress without a lot to see on the MRI. But typically, the more lesions you accumulate, the more progression there is, until it gets to a point where people move into a secondary progressive. So now, the contrast of that is the modern era where we've got a two pronged approach to stopping the development of those white matter lesions and therefore affecting the progression of the illness. So the first clearly that you'll get recommended by your neurologist is medication. And I think that audience would know of the 13 to 15 different disease modifying drugs that are available depending on where you live. And there is evidence that they do reduce the MRI and lesion burden, they reduce progression, although that evidence is still not particularly strong for some of the drugs but for some of the drugs, it's quite reasonable. And the second problem obviously is the lifestyle part of the OMS program because of course the OMS program includes the medication. It's really the the overarching program, but it doesn't ignore what the research is increasingly showing seems to be the major drivers of white matter accumulation of lesions and progression of disease, which are environmental lifestyle factors. And the important thing about those, the thing that I found 25 years ago that OMS continues to promote is that these lifestyle factors are modifiable, their risk factors for progressing, that you can modify, you can do something about. So, I mean, you know, diet's the obvious one, first up, and I love, I forget who it was who said this, but diet is in many ways the easiest, even though people find it the hardest because you have to eat. I mean, you don't have to exercise. You don't have to go out and get sun, you don't have to take vitamin D, but you have to eat if you want to live. So if you're going to eat, you may as well eat something that the evidence suggests is going to improve MS. Why would you choose to eat something that's going to make it worse? That doesn't make sense to me as a rational adult who is concerned about my health. So if you look at the difference between managed MS -that is people addressing the modifiable risk factors, the lifestyle factors, and taking medication if needed, and some people will need that because the MS disease activity will be so profound, others it'll be so minor. And they'll get such great results with the lifestyle that they will make an informed choice not to do that. They're individual choices for our audience to confront, individually with the help of their health practitioners. But you compare that approach to the unmanaged MS. And that is why you see such a difference in those people in terms of the white matter lesions, the progression of their illness. And in the managed group, we often see people reporting the exact reverse. And you will know this from the president of OMS, who reports that her brain scans are clear now. You know, there's a number of people in our community who report that the neurologist had discharged them because their brain scans have cleared up. And of course, the best badge of honor you can get at the end of that process is when someone's "I don't think you've got MS anyway". I'm thinking of getting some badges made up. You know, "my neurologist doesn't think I have MS" that you can wear proudly when you've been following this program for a while and things get better, rather than either staying the same or getting worse.
Liz Waters 42:29
Really inspiring stuff, Georga and I think a testament to you know how much agency we have ourselves what we can do for ourselves.
George Jelinek 42:37
Liz Waters 42:38
I'll pass you onto Sian for the next set. Thank you.
Sian Southward 42:44
George can people both living with primary or secondary progressive MS versus relapsing remitting MS benefit to the same extent from the Overcoming MS program?
George Jelinek 42:59
That is a question that's really difficult to answer. It's a really good question. And I know why it's because a lot of people find themselves in that position. And I'm sure there are many in the audience who are in that position. And we don't have definitive data about that. I guess. It goes back to my answer to one of the earlier questions we haven't actually in the neuroepidemiology unit - we're not an arm of OMS, as it were, we're an independent academic, neuroepidemiology unit within Australia's premier university, we research how the quality of diet impacts MS, you know, whether exercise has a relationship with disability and so on. We're not actually looking at a cohort of people with OMS, apart from those who have been to retreat, and then plotting the way they live and comparing the outcomes between different subgroups of that we don't have enough people in our STOP MS study for that to be a realistic possibility. But what I can say is that we get a lot of feedback from people, as I've mentioned before, personally and through the organization. And there is some compelling data, I think, from the study of Professor Swank who really was the one who launched me on this whole journey of mine 25 years ago. If I start with him, really a couple of the graphs in his multiple sclerosis diet book, I don't have it the hand or I could flip up the diagram that he showed that regardless of where you started in terms of disability - so he wasn't talking about whether you were progressive or non progressive he was talking about the level of disability - but it roughly correlated the people in the very low levels of disabilities, high levels of disability, who had a lot of disability were most likely progressive. For those people who adopted his diet remained relatively stable at the level of disability they had when they first adopted the diet, the people who didn't deteriorate very significantly over time, to the point where many of them were bed bound. So my sense from his work right at the beginning of all this was that you're gonna get benefit, no matter where you are in the trajectory of MS. You know, as long as you're still alive, the Overcoming MS diet will have some impact on the MS. Whether it's relapsing remitting, primary progressive or secondary progressive. Now what that impact is, is probably what people really want to know, am I gonna get to the point where my disability starts improving? And we know from case stories from from anecdotes that people have provided us that some people find themselves in that situation. So I think Megan Swan and Karen Law and my book Recovering from MS. She was diagnosed primary progressive and saw her trajectory improve after adopting the Overcoming MS diet, to the point where she's, you know, essentially fit and well certainly at last count. Anyway, when we last heard from their other perspectives, of course, I recommend people, again, the Overcoming MS handbook, I think it's a really brilliant book to read about this because it's written by our community. Yeah. So there's 50 different voices roughly, in that book of people in our community, one of them, the really important one is Phil Startin who the people here will know well, a meditation instructor, facilitator at retreats. And Phil was diagnosed with Primary Progressive MS until my understanding from reading his chapter and from speaking with him a number of times is that he does feel he's deteriorating. But he feels that the trajectory of that deterioration is considerably different than it was and would have been had he not changed those lifestyle factors. And that does seem to be a reasonably common view that we hear that there is still for some people, some noticeable deterioration, albeit slow. To my mind, obviously, that's clearly better situation than continuing in the trajectory that you were in. But from a research point of view, I'm always thinking, what is it about progressive disease that's different from relapsing remitting disease? That means that lifestyle seems to be not as effective as it is in relapsing, remitting disease, it still does seem to be effective. But is there something else going on that we need to look at? Are there genetic drivers of progressive disease that we don't yet know about? Most of the research suggests that progression is almost wholly contributed to by lifestyle and environmental factors, not by genetics, there's a few genes that they found that have a small role in progression. But the overwhelming majority of progression is environmental, and if it's environmental, and if people like Phil are doing everything they can about those modifiable factors, then what other environmental factors don't we know about that? Maybe we can address with time. And, you know, one of the things about this program is that it's a living, breathing piece of ongoing research. It's changed several times since it was first introduced, and it will presumably keep changing as new research comes in, and one would hope. For instance, one of the things that I think is going to be a key thing is, is the prior exposure to Epstein Barr Virus to the infectious mononucleosis, glandular fever virus that feeds that probably of the 299 people I can see participating at the moment. Probably 298 have had Epstein Barr Virus at some time in their lives without knowing it, for many of them, but I suspect that currently non modifiable risk factor may well be driving - depending on the level of activity of that low grade infection in their nervous system -they will be driving the disease for some of these people. And there's some really exciting work going on at the moment around Epstein Barr Virus vaccination. So vaccinating people against Epstein Barr Virus. But also, autologous T cell transfusion group in Queensland are doing where the immune cells of people who have had Epstein Barr Virus can be, and have strong antibody responses can be transfused into other people. That's my understanding of the research. There may be a breakthrough in the next five to 10 years where people developing an EBV vaccine, and people with MS can line up to get the EBV vaccine if you're in that situation where things are still progressing, despite doing everything, that's the sort of hope I have for the things that remain undiscovered. But I know that many groups are working on exactly that problem.
Sian Southward 51:06
George that's a great answer. And actually, you answered two more questions that we're coming up from the audience. So that's fantastic. Talking about HSCT. I'm not going to even try to pronounce that. But you did so eloquently. And also about EBV and MS treatments. So thank you for that. On the subject of research, we do actually get quite a lot of questions around menopause, women's health. And we've obviously done a couple of webinars on this. But are you aware of Overcoming MS research or any research regarding MS and the effects of perimenopause understanding that this person should understand that MS is also related to hormones?
George Jelinek 51:51
Yeah, I think that's been the hormonal influence on MS has been known for a long time. And we know that, particularly around pregnancy and childbirth and lactation, where pregnancy has always been protective against relapses, the postpartum period has always been a high risk period, but that is somewhat mitigated by breastfeeding. So it's very clear that that female hormones play a role in MS disease activity. And there's been a number of small trials of estriol and other estrogens for women with MS. And to date, there's been some encouraging results, but not by no means big trials. My problem, I suspect, Sian, the best person to answer this might be in a future webinar, Jonny White is actually an obstetrician who is much more across that field than I am. But it certainly seems likely that HSCT will have some influence, for example, the studies I don't think have been done. But Jonny would be much more across that research area.
Sian Southward 53:08
And that is a good point because Jonny's done a previous webinar for us on women's health and in fact, a shameless plug but he's going to be doing, he does a monthly live stream on our new Hub. So that'd be a really good place for people to submit those questions. So thank you, George.
George Jelinek 53:28
Jonny's really worth watching, if you haven't tuned into Jonny before, and actually just to give the Live Well Hub a plug as well. I'll be appearing live on that as well. Next week, I think, isn't it?
Sian Southward 53:40
Yeah, I was gonna do a shameless plug at the end, actually. But yeah, that's right. And whilst we're on it, we've got also Linda Bloom appearing tomorrow. So if anybody wants to hear more or understand how to access that or get on to the Hub, then please go on to our events page on the website. That was a lovely segue, wasn't it into our self promotion? So because you answered a couple more of the ones that I had in front of me, I'm just going to ask you this last one, and then I'll hand over to Liz if that's okay. We're moving back to diet and use of oil. So this person is asked about differing opinions about the use of sunflower oil. What's your opinion? And linked to that, is primrose oil also good to take?
George Jelinek 54:31
It's kind of interesting, these different oils. You may not know that when I first started the program, I recommended evening primrose oil. And it was largely through Judy Graham's book. Managing MS Naturally, I think it's called. And it took some time before I started to do enough research to realize that actually, these oils weren't particularly helpful in MS, largely because of the ratio of omega six to Omega three oils in them. That's the first issue with them. But the second one is how refined they are. So it's really virtually impossible to get an unrefined sunflower oil. If you buy sunflower oil anyway, you'll see it's refined sunflower oil, it doesn't smell anything doesn't taste anything. So already, it's a processed food essentially. And I go into this a bit more in the actual original Overcoming MS book about what the refining of oils does to them that it's a very protracted and unpleasant chemical process, which involves quite a bit of heating and exposure to catalysts. Bleaching, getting rid of flavor, getting rid of smell. So those oils, both because they're too much Omega six, which drives inflammation, this is omega three, like flaxseed oil that suppresses inflammation. For both reasons, they're best avoided. But when I say best avoided, it's actually fairly hard to find some foods without a bit of sunflower oil in them. You'll probably notice if you buy many brands of soy milk, but there's a bit of added sunflower oil. And the reason, of course, it's entirely refined, doesn't taste anything, doesn't affect the taste, but gives you that kind of creamy consistency. Personally, I have that soy milk, it's not a game changer. There's a small amount of refined oil in it. It isn't the oil I prefer. But I overwhelm that with the amount of flaxseed oil I have. So, as long as it's in small trace amounts, you might find, for example, that the sultanas as you buy have a small amount of sunflower oil added you'll notice on the label to stop them sticking together. That's pretty frequent. And for the first maybe five or 10 years of this program, for me, I hunted around to find alternatives that didn't have oil in them. And it ended up being the bane of my life traveling all over Melbourne looking for an oil free saltana, this is a trace amount. It's not a relevant question. It's sort of fine print. So I hope that answers the question. They're not the ideal oils. But in small amounts, they're not a great problem. I wouldn't use it as my go to oil - that's extra virgin olive oil for baking and any other purpose apart from supplementing omega 3.
Sian Southward 57:59
Thank you, George. Liz should be joining us.
Liz Waters 58:04
Hello, I'm going to jump on the oil bandwagon with the next question, which I think is probably going to be quite short answer. They have said is coconut oil really as bad as other saturated fats? Whal's diet recommends it?
George Jelinek 58:20
Yes, it is really as bad.
Liz Waters 58:23
Yep. To leave it there. Yep. Okay. Excellent. Somebody else's asked, I really missed the taste of meat. If I were simply to chew a piece of steak but not swallow it. Would it do me any harm?
George Jelinek 58:39
Oh, golly. This is the old pedestal thing, isn't it? Yeah, that's torturing yourself, isn't it? Like, in a theoretical sense, as long as you didn't swallow the oil that came out of a stake, I suppose it wouldn't be any harm. But why would you do it? It's their whole psychological, the way you approach this issue that I alluded to earlier that meat, as long as these things remain in a position of authority in your life, it's going to be very hard to change your life for the better.
Liz Waters 59:24
So the diet recommends fish, seafood. Is there any particular type of seafood that would sort of substitute you can get some really meaty fish, can't you? Is there anything that might suffice someone to further?
George Jelinek 59:39
Yeah, look, there is. I think looking for alternatives isn't something I generally recommend because again, it still is the meat as the principal player. Yeah. And you're just trying to copy it, replicate it. Seafood in its own right, for those of us who eat seafood, I know a number of people on the program don't and that's absolutely fine, totally compliant with the program. For those of us who do, seafood's great, there's so many options, so many different ways to prepare it. But there are certain guidelines around it. And ideally, you're eating at the bottom of the food chain. Because I mean, land animals are in the same situation. Animals concentrate a lot of the toxins in what they do. And the bigger the animal, the more they concentrate it, particularly at the top of the food chain in the oceans, sharks. They're really big fish that eat small fish. They have really high levels of certain toxins, and that's not particularly an issue for MS. But for instance, tuna, swordfish, that's really high mercury anywhere in the world. To the point where in many countries, they recommend pregnant women don't eat shark, don't eat tuna. And you think, well, if they're trying to protect the brain of the newborn baby, what about the rest of us? Maybe we should just not be eating it at all in the population? Sure, I'll have the occasional bit of sushi with tuna on top. But I generally don't buy tuna steak, and have that sort of volume of mercury. Simply because mercury is a neurotoxin. And you know, why add to the burden that you may accumulate with this illness. So bottom of the food chain is anchovies, sardines, small white fish, even up to the sort of bigger white fish, like snapper, and so on, many of which are herbivores anyway, so they're in the sea grasses and algae, and there's not so much mercury around in those fish. And then, of course, there's the whole issue about farmed fish. I pretty much eat only wild caught fish. Unless, and most supermarkets now label that sort of stuff. And it has, for me, it's important that it's wild caught somewhere near me, just for the sake of the planet, and reducing food kilometers and all that. But, you know, there are many countries in which practices around seafood are not nearly as good as they are in developed countries. So I'd be a bit careful eating seafood from China or Vietnam and places like that, where it almost all is farmed. And I've been to some of those fish farms and seen what they feed the fish and you're indirectly eating what they feed the fish of course, because it becomes part of the fish. So there's very little salmon around in the world that you'd want to eat, really, there's still some wild caught Norwegian salmon that you might wish to eat. But my suggestion would be that you look at seafood as a food group as a source of food in its own right. Look to experiment with different ways of cooking it and preparing it all the way from raw to baked to roasted to barbecued to whichever way steamed and enjoy it in its own right rather than seeing it as a substitute for meat.
Liz Waters 1:03:36
Excellent advice, lots and lots of information there as well. I've definitely learned something too. Thank you. And this is quite a specific one actually. How would you approach a diagnosis of hyperparathyroidism when following Overcoming MS particularly around vitamin D intake?
George Jelinek 1:03:54
Yeah, yeah. For people who don't know about hypothyroidism, the the parathyroid hormones are some small, tiny glands really embedded within the thyroid tissue. And they can become hyperactive just as the thyroid can become hyperactive. The parathyroid is responsible for calcium metabolism. So hyperparathyroidism can lead to disordered calcium metabolism and of course, vitamin D, strongly affect calcium metabolism. That's its principal role in the body really. Its secondary role is as an immune modifier, which is why we take it, so the short answer to that is that you need to have very specialized medical input into the level at which you supplement with vitamin D with frequent checks on the calcium and any, you know, any good endocrinologist around will be all over that and be able to give you clear advice about what's safe and what's not in that situation. So the usual recommendation of anywhere up to 10,000 units won't hold in that situation, you'll need to get specialist advice. And titrate the amount of vitamin D take against your calcium level, particularly so that it doesn't become toxic.
Liz Waters 1:05:19
Okay, work closely with your healthcare team, then. Fabulous. I shall pass you back to Sian.
Sian Southward 1:05:30
Thank you, George. We've got about 10 minutes left. Just to give you an idea. Next question is how is it that MS symptoms can progress without any changes that are evident on an MRI?
George Jelinek 1:05:49
Again, that's a really good question. And I'm glad that people are even aware that that's possible. Because we tend to place so much belief and faith in medical images, we regard them as a kind of report card almost on the state of our health. And medical images have evolved as technologies evolve, and they've gotten quite good, but they're still just a representation of what's actually going on. And they've got a certain resolution, for example, you know, the most modern scanners might have a resolution of, say, half a millimeter or something like that. But when you look at the microscopic nature of the central nervous system, you can see in people with active MS, that there's inflammation happening everywhere. It's not just in the lesions. And sometimes these become large enough to see on scan. And sometimes they don't. And you can have quite diffuse inflammatory change within the nervous system without seeing an awful lot on an MRI. But it still leads to quite significant demyelination, and disease progression and symptoms. And it has been something of a disappointment to the profession, that MRI isn't more closely correlated with progression, because we can use them as a really clear thing and say, your MRI is better today, so things are getting better. Or your MRIs worse, we need to do such and such. It's not that simple. And so the neurologist's overall assessment, including the clinical examination, other tests, like visual evoked response, perhaps lumbar puncture, and certain proteins in the spinal fluid, MRI, or are taken in concert with each other to determine how things are progressing, not just the MRI. And as a sort of corollary to that, could I suggest to people listening, the annual MRIs become a very common way of of monitoring this illness. But having said, having heard what I just said, you'll realize that there are certain caveats around that. And it's worth being a little more skeptical of that report card function of the MRI. So even if the MRI appears worse, it's worth speaking to the doctor and say more, actually, if it's true, actually, I feel somewhat better. How would you explain that and sort of get a more overall holistic assessment of a health going rather than just the MRI report, card, pass or fail or worse or better?
Sian Southward 1:08:51
I think that's something that often comes up actually about the people that are either having the confidence to talk to their health care professional, also having the time, the proper time to sit down with somebody and discuss, you know, their MS symptoms. Do you have any top tips, even just one tip of how people can approach those conversations, have that confidence to speak to healthcare professionals so that they feel that they're being listened to? I think that's a real struggle for a lot of our community.
George Jelinek 1:09:24
Yeah, there's a wonderful chapter in the Overcoming MS handbook, called Finding a Healthcare Professional. And it's written by a healthcare professional who's got experience herself with MS., looking around for someone to manage their illness. And she actually recommends looking fairly carefully, actually interviewing a number of people, but assembling a team rather than just an individual. My own sense of this for many people who have been on the Overcoming MS program for a while, they'll be starting to see some improvement in their condition. And that is commonly reported to us. If you get to a point where you've got relatively medium to long term stability, in my case, long term stability, and you're feeling better. So, you know, in my case, that means no symptoms then it makes no sense to be seeing a neurologist for me, a good GP can manage a well patient. And I've transitioned to the category of being a well patient now. So you know, GPs see well patients all the time for monitoring, assessing regular blood, you know, keeping an eye on lifestyle factors, seeing how their weight's going there, blood pressure, and so on. If you are in that fortunate group that finds yourself with that sort of outcome, then you might start considering having the sort of team leader as the GP, with a neurologist to one side for specialist referral if something goes wrong, or for the occasional MRI if need be, and interpretation of that, a physio perhaps off to one side, even a nutritionist or dietitian off to one side, with the GP coordinating that team. Or, you know, I mean, I'm fortunate in my case, I've got the medical knowledge to to do much of that for myself, but I still have my GP. And I've still got an appointment in a couple of weeks time for my annual checkup, and I let him take control over those things.
Sian Southward 1:11:45
And that's another plug for the Handbook, which again, we were fortunate to have you on last year to talk about that with Jonny, who you've mentioned, and also Phil, so thank you for that. George, we're going to have one more question, and then a final closing question for myself as well. So besides the diet, what would you recommend for easing fatigue and getting more energy?
George Jelinek 1:12:14
We published a paper out of the neuroepidemiology unit that looked at the effect of exercise on fatigue and analysis of all the studies that have used exercise as a treatment for fatigue and MS. And somewhat, possibly counter intuitively for some people who, and I understand that many people who are very fatigued, find exercise a big mountain to confront. But it seems to be effective across a number of clinical trials, that if you can establish a regular exercise program, preferably sort of mixed aerobic and strength exercise, I think, second to diet, that is probably the most effective thing you can you can do.
Sian Southward 1:13:16
Actually linked to that was a question that we didn't cover, but somebody referred to, they read that you do open water swimming, and do you regularly still swim? We've also had cold water therapy. So I thought I'd tack that on.
George Jelinek 1:13:33
I swim every day, apart from one day a week when I run. And I'll generally do it in a pool if there's one available but if there's not then I take to the ocean and particularly winter down here in on the south coast in Australia, it can get pretty damn cold in the water that I've got a pretty effective wet suit. And I've bought myself a sort of neoprene hood thing and some booties even so I sort of look like the the Creature from the Black Lagoon or something when I get out. I highly recommend swimming. Really good form of exercise, cold water immersion. I know a few people, probably a few who are listening in do the Wim Hof techniques, and I know a number of other people without MS who do that who find it really helpful and there seems to be sort of gradually emerging science about its helpful effects on the immune system but personally, that's probably a bridge too far for me given how much swimming in cold water immersion I already do without trying.
Sian Southward 1:14:48
Yeah. So to take from that movement is good, whatever form that looks like for individual.
George Jelinek 1:14:56
Absolutely, yeah. And to whatever level people are able to do that. And for some people that'll involve the local MS Society and the exercise therapist, their physiotherapist, you know, putting together a program, even if it involves, you know, no weights, just the movement of muscles and sometimes even a bit of passive movement to get things started and moving, then that's possible.
Sian Southward 1:15:29
Thank you, George. And we'll end with this final question and make of it what you like. But what advice would you give to your younger self?
George Jelinek 1:15:49
That's a hard question. It seems a long time ago that I was diagnosed with MS. I guess, because it is. Now it'll be 25 years soon. But it's still the sort of having seen what happened to my mother, who I've already outlived, sadly, by 11 years. I mean, I was just terrified about what was going to happen. And I needn't have felt that. When I think back, I mean, in a sense, it was for the best because I wouldn't have been compelled to do the things I've done to find the things that will help me and others with this illness. But when I think back, I could have avoided a lot of it, had I paid more attention to my health before I got sick. I think a few lessons emerge from that, for me. Beware of ambition. Be really careful with ambition if you're an ambitious sort of person. And I was and have a really clear think if you're an ambitious sort of person about who you're doing things for, and who you're achieving the things you're achieving for. The second thing I'd say, though, is actually take note of your health, you know, before you get sick, and this is probably the wrong audience to say that too. Because most of us who are listening have had a diagnosed with MS. But if I knew even a fraction of what I know, now, if I paid a bit of attention, I mean, mum got sick and, and died from MS in a relatively short space of time. And when she died, I just put up a wall between that event and the rest of my life and never looked into the box again until I was diagnosed. And it was, you know, the I can't even describe how how dark those times were. But if I just kept my eyes open, not used denial as a way of dealing with that, and even looked into MS in slightly, I mean, I was a specialist doctor. And you know, I really knew nothing about the various things I found. I had no concept of what important tool in our health diet is, as a doctor, really. And then I feel embarrassed to say that given how much my life has changed, but I think they're the things I would tell myself and maybe I wouldn't be where I am now. But honestly, given everything that happened, I wouldn't change where I am now. I am very glad to be here.
Sian Southward 1:19:12
Well, we're extremely glad that you're here and been able to share and be so candid with your responses. And thank you for your honesty, actually, to that question. I think actually, it's a really important point that you make, because we talk a lot about diet, we talk a lot about movement, meditation, but actually one of the other pillars is around family prevention. So as you say, you know, we have that awareness and that's how we can you know, we can put that focus also on our family and our health and, you know, even outside of the world of MS. That's a really important message. We have overrun I don't care because it's been such an interesting session. The numbers speak for themselves, your answers that have been so helpful for so many. And I just wanted to thank you so much, George, for taking the time out of your busy schedule and your family life, which is going on in the background. And joining us for another fantastic webinar. So thank you again from myself and all of us at Overcoming MS and the community for joining us today.
George Jelinek 1:20:22
Thanks a lot, Sian. Thank you. Thanks, everyone for coming and listening in.
Sian Southward 1:20:26
Now, it's been super, super helpful and so interesting. So thank you, George. I'll just do my final closing, which of course is to thank you, George, and, Liz, and then Jake and Katie helping in the background. So we have lots of questions coming through. We will be taking a break for the summer in terms of webinars. But as we plugged earlier, I do want to mention that we have our live stream with Linda Bloom tomorrow. That's 12pm UK time. And that's on the Live Well Hub. And as George said, also we have George on Tuesday, the first of August actually at 10am. Again, UK time. And you can find out more information about these on our events page and also about how to join the Live Well Hub, if you haven't done so already, I think we've now got over 800 people that have joined which is fantastic. And then another selfish little plug is around the Overcoming MS survey the Community Survey, which will be launched on Monday. Again, it's your opportunity to have your say. We really want to hear from our community. It really helps us to shape our services and, and doing events like this. So look out for that on the website in the newsletter. And all that's left for me to say is thank you everybody for joining us and have a great day, evening from wherever you're joining us. Thank you again, George. Speak to you soon.