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S5E17 Webinar highlights: NEU updates with Associate Professor Sandra Neate

Listen to S5E17: Webinar highlights: NEU updates with Associate Professor Sandra Neate

Welcome to Living Well with MS. In this episode we are delighted to welcome Associate Professor Sandra Neate as our guest! Sandra is from the Neuroepidemiology Unit (NEU) at the University of Melbourne where she researches lifestyle modification and diet quality for people with MS.

This webinar was recorded in September 2022 as part of our ‘Finding Hope with Overcoming MS – 10th-anniversary edition’ webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and bio. 

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Selected Key Takeaways

Evidence shows there are benefits to regular meditation

(28:57) “The most compelling result was that meditation resulted in reduced depression, and increased feelings of mastery. It’s about the feeling that one’s life is under one’s own control and not controlled by external forces, feelings of empowerment, that sort of thing. The interesting finding was that those who were meditating even as little as once weekly for 20 minutes were still experiencing a benefit.”

Sticking to the Overcoming MS diet can lead to improved health outcomes

(21:34) “We’ve conducted two studies that have looked at sticking with an MS-specific diet. Now some of these are named MS diets, like the Swank diet, the Overcoming MS diet, the Wahls style, etc. One of our studies looked at whether following an MS-specific diet led to improved health outcomes. It found that persistent adherence to the Overcoming MS diet led to lower fatigue, disability and depression than both non-adherence and ceased adherence to the diet. So, your ability to stick with the diet is a very important thing.”

The Neuroepidemiology Unit wants to provide with the tools for people with MS to take control of their health

(45:15) “We’re trying to build a picture of what lifestyle modification can do in MS. By doing that we hope to help people with MS find confidence and empowerment through the knowledge they’ve gained. We hope to provide people with MS with the tools to self-manage because the principles are fairly simple. The practicalities may not be so simple, but the tools are there. We hope that people will live with hope, based on the evidence that we’ve provided.”

Transcript

Read the episode transcript here

Overcoming MS  00:01

Welcome to Living well with MS. This podcast comes to you from Overcoming MS. The world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. 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.

Overcoming MS  00:33

Today’s episode features highlights from the An Audience with Associate Professor Sandra Neate from the Neuroepidemiology Unit (NEU) webinar recorded live in front of our global audience as part of the Finding Hope with OMS 10th Anniversary Edition webinar series. To join us live for the next webinar or to watch the original presentation head to our website overcoming ms.org.

Sandra Neate  00:59

I’m very grateful to be here today I have had a long relationship with the Overcoming MS charity. And today they’ve invited me to speak about lifestyle modification and its impact on MS outcomes.

Sandra Neate  01:17

I’m Sandra Neate and I’m from the Neuroepidemiology Unit at the University of Melbourne here in Victoria, Australia. But we are quite a small team where we come from very varied backgrounds. My background is one of clinical emergency medicine. I was a specialist in emergency medicine for 20 years and a clinical doctor for 30 years before I joined the neuroepidemiology unit in 2015, which was quite a career move for me and quite an unusual background for an academic in epidemiology. You’ve probably all heard the word epidemiology quite a bit through the pandemic. And it’s the study of population health really the and things that affect populations rather than individuals. And our team is made up of people with a variety of skills. We have an epidemiologist and statistician, a neuroscientist, and lots of varied skills but a small team producing a lot of research which has, I hope having quite an impact in the health literature.

Sandra Neate  02:22

The neuro epidemiology unit was set up in the Melbourne School of Population Health in the Faculty of Medicine in 2015, by Professor George Jellinek, and he stepped down in 2019, when he retired and I took over as head at that point. Over the time and probably preceding that 2015 date by a little bit. We have published the team in the neuroepidemiology unit or the NEU as we call it over 40 peer reviewed publications from our flagship HOISM study. Now I’m going to talk a little bit about the HOLISM study, and many of you may actually be participants in the HOLISM study. So you’ll know a good deal about that. So we’ve also had many other publications from other studies that we’ve undertaken, and with collaborators around the world, excuse me, we currently collaborate across the UK, Europe, the USA and within other universities in within Australia. And our aim is quite simple. At the NEU we aim to assess the role of lifestyle modification in MS. We don’t do research into drugs, I’m not terribly knowledgeable about drugs. So what are the questions that we are trying to answer? They are which lifestyle factors are associated with better health outcomes? Which lifestyle modifications, if any, are the most important or more important than the others? And is it necessary to do all of them? Sometimes people will say, can I just do the diet? Or can I just do something else? And so we’ll talk about whether it’s necessary to do all of them. So what is lifestyle modification? Well, I’m probably talking to the converted, people who know a lot about lifestyle modification. But just if you don’t, lifestyle modification involves altering long term habits, and behaviors, or as I sometimes like to call them choices, because we talked about habits and behaviors that can sound a bit negative, but so we need to alter our life choices and maintain the new behavior over months or years. And lifestyle modification can be used to treat a range of diseases and is quite commonly accepted in some areas of medicine, particularly in heart disease, and with diet and things like that are quite well accepted as standard treatment for the conditions for those conditions. It’s not quite well, so well accepted in the MS world and we’re not quite sure why but we’re working on that. So I just wanted to draw a distinction between the studies that we undertake at the NEU and the OMS program.

Sandra Neate  04:56

 The Overcoming MS program, you would probably know if you been engaging with the OMS website and the Overcoming MS program seven steps book that the seven steps involve eating well, sunlight and vitamin D, getting sufficient exercise, meditating, taking medication as and when required, dealing with the risk factors that your family members have and changing your life for life. Now, that’s the program as it stands. But as researchers, we need to focus on particular things. So what we do is we have focused on five lifestyle behaviors, and five or so, or more actually, but the main outcomes that we look at the so the lifestyle behaviors that we examine, is smoking, although we don’t look at that a lot, because I think the literature about smoking is well established that it does nothing good for anybody under any circumstances. So we look at diet, physical activity, vitamin D, and stress reducing activities, and the outcomes, we examine our most frequently disability, depression, fatigue, relapse rate and quality of life. And we talked about these as the sort of hard outcomes, the ones that are easy to measure. There’s other outcomes that I’ll speak more about later that are of great interest also.

Sandra Neate  06:47

Proving which interventions work is not a simple thing. There’s many different types of evidence. And each type of research comes with its own benefits and its own limitations. And really, in science, there is no such thing as truth. Each piece of evidence forms a part of the jigsaw puzzle of understanding the truth. And sometimes you can do a trial, a study that shows completely the opposite from what nine other trials have shown. And that’s just because that happens by chance, but it’s all part of forming the picture of truth, or towards forming a picture of truth of what is really effective. So every little study adds to the story, really. And I asked the question, is there anything such as proof, and there probably isn’t. But the other question to ask is, is proof necessary.

Sandra Neate  07:41

And I think that it depends who you are, whether proof is necessary, or what level of proof is necessary. For example, if you’re a neurologist, you may want a very high level of high quality evidence before you prescribe a drug to a patient, because there’s potentially a lot of side effects and you want the person to have the best outcome. Whereas if you’re a person with MS, the level of evidence that you require to make a change may be completely different. It may be that you’re willing to accept all sorts of evidence, even perhaps an anecdote from somebody that is compelling a personal story that is compelling to you. And that may be sufficient for you to make significant changes in your life. So there’s all sorts of levels of evidence, and they’re all important.

Sandra Neate  08:32

I just want to go briefly through a couple of types of studies that we refer to just so there’s an understanding of the evidence that I’m going to show you. And the first one, that’s the main sort of study that we conducted, the interview is called an observational study. And it is as it sounds, and observational studies where we observe the effect of something a risk factor, a treatment or other sort of intervention, in a population of people without trying to change who is or isn’t exposed to that particular thing. We watch things unfold over time without intervening and we make comparisons between the different people in the population

Sandra Neate  09:13

Our HOLISM study that I’ll talk a little more about is one of these observational studies and observes a large cohort of people over time. The two types of study designs in observational studies that are somewhat important to understand as well, because they tell us what we can conclude from the studies. So we talk about a cross sectional study, which is as it sounds, it cuts across one point in time. So in our areas of research, it examines lifestyle behaviors and compares them with outcomes at the one time point. So it’s like a snapshot that and so we’re talking perhaps about this level of physical activity is associated with this level of depression, but we can’t determine cause we can’t tell whether the physical activity determines the depression or the depression determines the physical activity, it could be working in either direction, we’ve just identified an association. On the other hand, a longitudinal study where we examined the lifestyle and the outcomes over time, gives us more information about how the lifestyle behavior affects the rate of an outcome. So we can be more confident of the causal relationship in which direction it moves. So if we look at physical activity, and then we look at depression, at one time point, the second time point, the third time point, and they’re all showing the same thing, a similar trend, we can be more confident that this is causing that.

Sandra Neate  10:44

We talked about a prospective analysis, and that’s what looks at a behavior at one point, and what happens into the future. So it’s giving us a more reliable source of evidence. The other type of study that you’ll often hear about is an experimental study where the researchers introduce an intervention and study the effects on the population. So the intervention that you most commonly hear about will be a drug. So in these experimental studies, the patients are generally randomized, some get the drugs, some don’t. They’re in the control group. And the the subjects are grouped by chance, and then the effects of the drug are followed, the effects on the patients are followed over time.

Sandra Neate  12:06

It’s these observational studies are often open to dispute for the reasons I’ve described, it’s hard to determine cause. And they’re open to what we call confounding biases, meaning that there might be physical activity and depression. But in the background, there might be many other things that are influencing those things like alcohol intake, or, you know, disability. And so that might be having influences that we have to account for.

Sandra Neate  12:51

So then we’re left with what we call a hierarchy of evidence. So the ones I was talking about the observational studies come here in the middle, that cohort and case control studies, the randomized control trial I was talking about. So they all sort of seem to be in the middle of the quality of evidence. Up the top here, we have systematic reviews and meta analyses. And what these are, is the bringing together of multiple pieces of research and examining the whole lot together to see if there’s any findings that are consistent across all those studies. And we’ve recently conducted a systematic review, interestingly on smoking and MS. And found very strong associations with depression and anxiety related to smoking across many studies.

Sandra Neate  14:14

I want to talk to you a little bit about the HOLISM study. As I said, you may have heard of this. Many of you may be participants, it began in 2012. And we’ve been following people since that time, up to 7.5 years later, we stopped following people after that time, because the numbers have dwindled to make our findings difficult to become of significance. It’s a very important study in the in the health literature, due to its longitudinal nature, you find very few observational studies of interest related health outcomes and behaviors that go for 7.5 years. And it’s a very important study.

Sandra Neate  14:56

So let’s have a look at some of the literature. I’ll start by talking about diet, because most people find that very interesting and important. And I just want to talk, first of all about what constitutes a healthy diet, because I’m going to be talking about a healthy diet and a high quality diet. And there’s many ways of defining and measuring diet. And in our questionnaire in that HOLISM questionnaire, and then many studies around the world, we use the diet habits questionnaire, but there are others. And it’s a list of many questions about what you eat and what you don’t eat, and how often, and it comes up with a score out of 100. And if you get a score over 80, you are said to have a very high quality diet. Specifically, it is a diet that’s high in fruit and vegetables, grains, and pulses, as you probably all know, high in polyunsaturated fatty acids from either plant or fish, low in dairy and meat and other saturated fats, and low in processed foods, sugars and empty calories.

Sandra Neate  16:25

There’s a couple of studies here that as I pointed out their prospective studies, meaning that the people have been followed, not just at one time point, like the cross sectional studies, but over time, 2.5 years and 7.5 years. These are studies done by Steve Simpson yet, and we’ve looked here at the same fatigue in the same way. And I’ll just talk to you here, we found that there was an association right through in our prospective studies with better quality diet and disability. And there were associations with relapse rate and fatigue, but only seen in these cross sectional studies. We didn’t find anything in the prospective studies. So diet and disability over time. Now just want to clarify that when we talk about disability over time, we’re talking about rates of increase in disability because left unmanaged people with MS will generally develop disability over time. So what we’re describing here is the differences in the rate of increase in disability we’re not describing here, anyone who has decreased in their level of disability, it’s just a slowing of the rate of increase, but still a very significant thing. So when we examined the diet at baseline, so the very first survey that everyone filled out, and the risk of having increased disability 7.5 years later, a significant amount of time later, a high quality diet showed a substantially less incentive substantially decreased risk of increasing disability, I’m sorry, if that’s a bit difficult to understand. And if you’re in the top half of the diet quality, you had a third less risk of having an increase in your disability over that time.

Sandra Neate  18:14

Meat and dairy consumption absolutely stood out and had double the risk of increasing disability over that 7.5 years. And this is just talking about your diet at baseline what you were doing at baseline without us examining anything else in the intervening 7.5 years. But then we did to go go on to look at what happened if you changed your diet quality over the over a 2.5 year period.

Sandra Neate  18:38

So what about quality, diet and quality of life and depression? So diet quality associations with quality of life and depression have both been substantiated in these prospective studies, the study is of higher quality. So once again, are any use studies in the red box, which makes up the majority of them? And the important deeply important, the more important studies, the more the more convincing studies, but one of the better word, this 2.5 year and 7.5 year prospective studies, and I’ll just briefly look at those as well.

Sandra Neate  20:03

So when we looked at the baseline survey to the 2.5 year follow up, high diet quality, with no meat or dairy intake led to less depression. So that was a very strong finding. Along with that finding. We also found that vitamin D supplementation, Omega three supplementation, regular exercise and meditation also contributed to less depression 2.5 years later. So most, if not all, of the lifestyle behaviors, contributing to decrease depression, and quality of life. The quality of life one was conducted up to 7.5 years review, and very convincing, again, baseline to 7.5 baseline high quality diet, better physical quality of life, they define quality of life into physical and mental quality of life. And we talk about quality of life. That’s quite a diffuse term. But I think it’s probably fairly self explanatory what quality of life means it’s really your day to day experience of your life. And in some ways that’s possibly more important than anything else. But so the baseline high diet, quality, better physical quality of life, baseline meat consumption, lower physical quality of life, baseline dairy consumption, lower physical and mental quality of life. So quite compelling evidence, I think, or a high quality diet.

Sandra Neate  21:32

What about sticking to a diet, we’ve conducted two studies that have looked at sticking with an MS-specific diet. Now some of these are named MS diets, like the Swank diet, the OMS, diet, the Whals style, etc. So one of our studies found that we looked at whether following an MS specific diet led to improved health outcomes. This is not yet published. But is being written up. That persistent adherence to the OMS diet led to lower fatigue, disability and depression than both non adherence and adherence to the diet. So your ability to stick with the diet is a very important thing. The UK MS Register diet study is one that we’re about to begin. It’s a collaboration between our wonderful colleagues in the UK at the University of Swansea, Imperial College London, and Oxford Brookes University. We’re going to use the data from the UK MS Register, and probably many people on the call are part of the UK MS Register as well, where people it’s an annual survey of national survey of the UK of greater than 2,400 people. And it’s been going since 2011. And participants fill in a survey twice a year, which is very good. Often that’s be quite an onerous task. And the UK MS Register has lots of data about their their health, their clinical condition, who and what they are, and some lifestyle characteristics, not as many as we had in our home study, but some lifestyle behaviors.

Sandra Neate  23:51

In 2015, our colleagues inserted a large a 120 question diet survey, which is a very intensive instrument and much more intensive than the diet habits questionnaire that I spoke on earlier. So giving a lot more detailed information about foods that people are consuming and their outcomes. So we are going to in collaboration with this group, repeat the survey either this year or early next year, so that we will have the information from the 2015 survey. All the characteristics of the people in the intervening years, repeat the survey see what people are doing now have they changed if they adopted a healthy diet? Has their diet gotten less healthy, and what their outcomes are up to 10 years? Why are we doing this? Well, we think it’s adding depth and breadth to the current diet data. It is very difficult to conduct a randomized controlled trial regarding diet as you can imagine making people eat a specific diet, but we think there is potential there for some sort of intervention that we could perform based on the information that we received from this study. To try and conduct an RCT (randomized controlled trial), at some point in the future, to try and increase the level of evidence yet again.

Sandra Neate  25:09

So that’s diet, let’s have a little look at physical activity as, as the behavior and in the, in the HOLISM study, the physical activity is defined as fairly vigorous exercise three to five times a week for 30 minutes. But so that’s the sort of level of exercise you have to do to achieve the results we’re going to talk about. But that’s not to say that that’s the only level of exercise that’s beneficial. Any exercise is good exercise. But we have to define it somehow, for these studies, we have to have a tool and we have to have, you know, measures and things like that so that it’s consistent across the research. So please don’t get the wrong message that that it has to be extreme exercise. Any exercise is good. But the evidence about exercise is quite strong. Once again, the NEU studies in the red box, the prospective study in red print, and multiple cross sectional studies have shown that greater physical activity is associated with less disability. It’s probably this is some of the detail that you don’t really need to read. But one prospective cohort study substantiates this finding lower disability associated with greater physical activity. I think that’s a pretty strong message these days about physical activity and disability. And a very important one to keep in mind. What about physical activity and relapse? To cross sectional studies evaluating relapses and outcome both show greater physical activity associated with with reduced relapse, but both cross sectional studies and nothing prospective, but they’re still evidence, you know, they’re still important information. What about vitamin D, that’s the next behavior. The next lifestyle modification that we can examine. And we we examined supplementation of vitamin D, it’s quite difficult. We do measure sun exposure in the HOLISM study, but it’s quite difficult and unreliable. But so the funny thing about the vitamin D research is that it took a while to get going. And by the time it got going, a lot of people with MS was supplementing with vitamin D. So the results have been a little difficult to interpret. And we think that’s because that’s possibly due to latitude. We know there’s a latitude gradient with MS. The people who are in sunnier areas have less MS. And that, for a long time, people weren’t measuring vitamin D, they didn’t think it was important. And then people began to supplement. So by the time we started to measure, people with MS already had higher levels than the average population. But we have got one prospective study here showing that list is showing list disability with increasing vitamin D. Vitamin D and relapse most prospective studies show a beneficial relationship between vitamin D, increasing vitamin D levels and reduce relapse rate. And two of these are prospective studies, both by Steve showing the strong relationship between vitamin D and relapse.

Sandra Neate  28:30

Stress reducing activities. In the OMS program, we talked mainly about meditation, but we include other stress reducing activities as well in our examination like mind body activities. Physical activity, we sometimes include in stress reducing, but in this study was one of our prospective HOLISM papers that looked at stress reducing activities over a five year period. And the most worthwhile result, or the most compelling result was that meditation over that, over that period, resulted in reduced depression, increased feelings of mastery, I’ll talk a little bit about mastery more, but it’s about the feeling of that one’s life is under one’s own control and not controlled by external forces, feelings of empowerment, that sort of thing. And the interesting finding was that those who were meditating even as little as once weekly for 20 minutes was still experiencing a benefit. So I mean, I think you can take a lot home from that study. It’s a prospective study, stress reducing activities are useful and particularly in reducing depression.

Sandra Neate  29:46

So what does it all mean? Well, the message is fairly simple in a way, the diet studies the diet data, the diet research is quite compelling. A high quality diet is essential. Data with improved health outcomes, disability, fatigue, depression, and sometimes relapse rate. Relapse rate is a difficult measure. Because it’s about self reporting and recall as all of these things are, but it’s not quite as reliable as the other measures. vitamin D supplementation, non smoking, physical activity and stress producing activities. That is the other four behaviors other than diet are all associated with improved outcomes also. And when you look at it the other way around, what about the health outcomes, quality of life, disability, fatigue, depression and relapse rate are all affected by some if not all of the behaviors in these large populations. So, up to this point, we’ve been looking at individual lifestyle behaviors, diet, smoking, vitamin D, etc. What happens if you put them all together? So we have developed a another study called the Stop MS study, which is the study of people attending an MS retreat. And this was looks at a whole of lifestyle approach. We have conducted a large group of people over the years a large group of different people, residential workshops, five day residential group workshops promoting the OMS program, and these commenced back in 2002. But we specifically studied six workshops, we find a lot of people but this these particular six workshops that ran between March 2012, and May 2013, we had a lot of detailed data from rather than just some some quality of life data. So we followed those participants at one year and three years after their attendance at the retreat or the workshop. And the findings were very important, because we’re looking at the whole of lifestyle approach. And we’re looking at whether people can maintain that approach over time. So what we found was that, after attending the workshop, there was the participants reported overall an improved physical and mental quality of life, a small decrease in their disability. Now, this is the only study where there’s actually been an actual decrease in disability, not just that rate of increase that I was referring to, but a real decrease. It was small, and not statistically significant, or sorry, not clinically significant, we thought, but it was still there. Fewer reported a relapse in the year preceding filling out a survey. And the behaviors, importantly, were maintained, not all together, but in general. And another important factor was that medication use increased over that period of time. And the reason I say that is because we don’t study medication, but we totally accept that medication is a useful intervention. And can be, you know, extremely worthwhile and important to discuss with your neurologist. But it’s not something that we we we examine but also not something that we feel is not worthwhile, we certainly feel it’s very worthwhile. It’s just that we don’t study it. So over that period of time, medication use increased. But the important finding, I think, apart from those ones was that lifestyle modification was both feasible and sustainable, because a lot of people wonder whether you can stick with this for a long time. And I mean, the group of people who went to these workshops were obviously highly motivated. But people can stick at it. And they do. And from personal experience, I know many, many people who have. So what about the question, can you just do some of the behaviors? Or do you have to do all of them because some of them are easier than others, to different people find different things easy and difficult. So one of our studies looked at the individual lifestyle behaviors and related them to quality of life over a 7.5 year period. So another prospective study. So we found that if you did equal to or more than three behaviors, this was related with having a higher quality of life. So less than three behaviors didn’t have an effect. But the optimal effect was found with all five behaviors. And prospectively greater than three behaviors at 2.5 years and greater than two behaviors at five and 7.5 years lead to improved quality of life. And we felt that it was most likely driven by diet and physical activity. They seem to be the two most important ones. But as we said, all five gives optimal effect. So this study suggests that multiple healthy lifestyle recommendations should be encouraged and supported. What about MS type? It’s quite unusual and I’m sure many people with progressive MS will agree to see researched specifically about progressive MS. And this is one study and only one I’m afraid. But one study where the NEU collaborated with the Accelerated Cure Project for multiple sclerosis in the USA, using another large population, the I Conquer MS database of about 1100 people. We looked at diet, supplements wellness activities, which included mind and mind-body activities and physical activity and related them to quality of life. This was a cross sectional study for people with progressive MS and diet was measured differently in this study. So I’ve just turned to various healthy diets or various high quality diets, they were classified as low carbohydrate diet, anti inflammatory diet, they were classified slightly differently, but various sticking to a healthy diet resulted in better mental and physical quality of life. But I think more importantly, physical activity was clearly associated with better cognitive function, mobility, less depression and fatigue. In people with relapsing remitting MS. wellness activities were associated with improved cognitive function, social participation. And once again, physical activity had a great impact, higher mobility, positive mood, meaning less depression, social satisfaction, lower anxiety, depression and fatigue, and improved sleep.

Sandra Neate  36:38

What about other outcomes? I said, we often look at those hard outcomes disability fatigue, relapse rate depression, what about other outcomes and other types of studies, the EU sort of prides itself really on looking at some less common outcomes and using some less common study types, the outcomes that we’ve looked at, to include mastery, as I said before the extent to which an individual perceives their life circumstances as being under their own control, engagement, that is the value of participation and the sense of belonging, and study types. I briefly mentioned our qualitative work where we look at interviews, sorry, we conduct interviews, talking to people directly about their experiences of MS and lifestyle modification. And another study where we’ve analyzed some written answers from the HOLISM study. And the other, slightly more uncommon way of approaching things that I’ve wanted to describe to you was through personal experience and collective experience. Mastery, our paper on mastery, which was a prospective study, over 2.5 years, found that those with the highest level of mastery had less depression, less fatigue. But in the prospective study, we found that those in the top half of mastery had 70%, less depression. So if you felt a sense of control, you felt less depressed. And we know that all the lifestyle modification behaviors that we’ve talked about, through various other studies we’ve conducted lead to a sense of control. So lifestyle modification through mastery also may lead to less depression, engagement, I really liked this study, it was a cross sectional study, not a prospective study. It was from the HOLISM database, it looked at engagement with MS resources, and they were either the having attended an OMS residential workshop, engaging with the Overcoming MS book or engaging with websites, such as the Overcoming MS charity, etc, and other MS related websites. So what do you had to do was engaged with one of those activities, and you had improved quality of life and lower rates of depression and fatigue? For the people who had attended a workshop, their rate of depression was half that of the whole sample. Once again, there might be many reasons for that. For those people who didn’t engage with at either any of the three things, there was three times the level of fatigue 10 times the level of depression, and lower physical and mental quality of life. So the interesting message from this, I think, that is engagement or developing a community or developing networks or engaging with material about the illness that you have, from those good outcomes.

Sandra Neate  39:32

Just briefly, our qualitative studies study that we conducted on the free text responses in our baseline HOLISM survey regarding people’s thoughts about lifestyle modification, we just said Do you have any other comments you’d like to make? And there were hundreds of comments from people about all sorts of different things. So what we did was we looked at all those comments and we found themes that arose from all those written comments. And they were very interesting. They to use and this is what I was saying before about how this sort of research even though it would come down on the bottom level of that hierarchy of evidence still tells us, I think, really amazing things. And it’s the research that I’m best at and that I enjoy the most and get the most out of the themes that arose from from that study of that one question were practical challenges about lifestyle modification, physical and psychological barriers to adoption. And we talk very positively all the time about lifestyle modification, all the benefits, but the reality is, of course, to those of us who are new, who tried to adopt lifestyle modification modifications, sometimes not easy, and that there was many challenges and barriers. But equally, there were enablers of change things that helped us change, and many people reported some outcomes that they had experienced. So an example of the practical challenges where the person says I’m a firm believer in lifestyle change and dietary change. However, I’ve found it a bit hard to implement something that we can probably all identify with, a bit contradictory. I know, with three young kids I do seem to still put myself last are very common expression. Despite my illness, there is never enough time in the day. So someone who feels strongly about it, but still, the practicalities of life get in the way. And we can all sympathize with that.

Sandra Neate  41:23

In terms of an experienced outcome, one of the participants wrote, I wouldn’t be as determined and individual as I am, if I hadn’t been told of my diagnosis or experienced these symptoms, I can say that I would never have achieved what I have without them. So someone who has found that having MS and making the changes, and adopting lifestyle modification has led to some beneficial effects on him as an individual. We heard some amazing things. So it’s always amazing to hear what people have got to say, just to speak briefly of my own personal experience. talking really about the OMS, what we used to call the OMS, retreats or workshops that we’ve been conducting over 20 years, both in Australia, New Zealand, Europe and the UK. And this is one of the places that one of the retreats was conducted in the UK that I’ll was obviously unfortunate enough not to attend. I’ve, we have all the facilitators of these retreats and workshops who come from all over the world have met hundreds of participants. And we’ve seen those participants develop strong networks with each other, they form social media groups, they have reunions, one group in particular, the UK group had a reunion every year until COVID put an end to that. The other facilitators have watched people over these years self manage their MS develop their own expertise, and frequently remain well. And just you can spend your life developing evidence about lifestyle modification and MS health outcomes. And when you meet the people who are doing it, it’s a very different experience. It’s a wonderful experience. So we’ve seen a lot of people with some very positive outcomes. We wanted to produce a book for people with MS written by people with MS. who’d been on the program who had a long experience of lifestyle modification. And, but were also experts in the topic about which they wrote the interesting thing I think about the book and I guess I’m a little biased, but it covers a range of topics that are often not covered. It’s really a companion to the Overcoming Multiple Sclerosis, seven step program book, which is very scientific, very evidence based, this is a little bit more of a conversational book. It covers a range of topics that are often not covered, such as mental health, choosing your healthcare team, resilience, work, pregnancy, progressive MS, disclosure, all sorts of things. So I think it’s a very useful book. It’s written by a team of international experts, most of whom have MS. The only people who don’t have MS. Dr. Brandon Beaber, who was the neurologist who wrote the first chapter about what is MS. And myself and my stepdaughter who wrote about families of people with MS. And everyone has their own particular expertise and experience so for example, we had a chef with MS write about diet. Psychiatrists with MS write about mental health psychologist with MS write about resilience and so on. Every chapter is associated with a personal story from a different person, each of whom have MS talking about their own particular struggles and challenges and wins etc. Very inspiring stories, and the Overcoming MS Handbook: Roadmap to Good Health which was published this year. It was edited by George and myself and Michelle O’Donoghue, Harvard cardiologists with MS.

Sandra Neate  45:05

So what are we aiming for in the NEU? Well interestingly, I think we’re aiming for exactly the same thing that Overcoming MS is hoping for we’re aiming for. We’re trying to build a picture of what lifestyle modification can do in MS. And by doing that we hope to help people with MS find confidence and empowerment through the knowledge they’ve gained. We hope to provide people with MS with the tools to self manage because the principles are fairly simple the practicalities may not be so simple, but the tools are there. And we hope that people will live with hope, based on the evidence that we’ve provided.

Overcoming MS  45:48

Thank you for listening to this episode of living well with MS. Please check out this episode’s show notes at overcomingms.org/podcast. You’ll find useful links and bonus information there. Have questions or ideas to share? Email us at [email protected] or you can reach out to Geoff on Twitter @GeoffAllix. We’d love to hear from you. Thanks again for tuning in and see you next time for tips on living a full and happy life with MS.

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Associate Professor Sandra Neate’s bio:

Sandra’s career

Associate Professor Sandra Neate is a clinician researcher who is the head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at the University of Melbourne in Australia. 

NEU research

The NEU researches lifestyle-related risk factors in MS and health outcomes and the experiences of people who adopt lifestyle modification. The NEU is also developing and researching novel ways to deliver evidence-based information about lifestyle modification to people with MS, including online modalities. Sandra’s personal research interest is in talking with people with MS and their families regarding the experiences of lifestyle modification.