S4E29 10 minutes with George Jelinek: Learnings after following the program for years and the future

(4:25) “Some of the best things I’ve seen have been in people who didn’t physically get better. A good example is someone who came to the program very early on when I first started running the retreats, who was using a wheelchair and had had MS for 25 years and was very disabled and was very depressed…. I saw her again, some months and then years later, and she was still using a wheelchair to get around and she still clearly was very disabled. But for me, there was this sort of radiance coming from her…. And I thought, now there’s an outcome worth celebrating, even though it doesn’t quite fit into some of the preconceived ideas we might have about overcoming [MS] or recovering.”

(10:36) “There’s stuff in the literature now about cryotherapy – about regular exposure to cold – and some people have already adopted that. But these things are in their infancy, really, and we aren’t at the point where I think it’s sensible to adopt it as a mainstream recommendation in the program. But like all evidence-based programs, as the evidence keeps accumulating, the program will keep evolving, and that’s how it should be.”

(12:24) “There’s no guarantee, but if you can modify the risks, (and there’s a good science on which factors cause the illness to progress)… then you give yourself every chance of having the best possible outcome. And these are generally diet, exercise, stress, sunlight and vitamin D. They’re really the key planks [of the Overcoming MS Program].”

Geoff Allix   

Welcome to the fifth edition of 10 Minutes with George. And welcome back, George Jelinek.  

George Jelinek   

Thanks.  

Geoff Allix   

So just a few questions today. Firstly, I think this is quite a good question, actually. And one that maybe I wish I had an answer with when I started. What do you wish that you’d known earlier on when adopting the program? 

George Jelinek   

Ah, that’s a tricky question to answer. I’m not sure that there’s any particular thing that would have made it it easier. I guess, the thing for me really is, in a sense, I wish I’d known the enormity of what change would happen in my life, once I started changing. I mean, most people sort of feel it’s very hard to change. And I think I was probably in that sort of camp, prior to getting diagnosed with MS. But in a sense, I wish I could have seen the future, and how different life would be when I first started doing this, because I might have, I might have made a few different choices along the way. For me, everything about life change, once I started changing, apparently simple things like diet, exercise regime, you know, the other parts of the program, but also, once I started interacting with the MS community in a sort of more broad way. And I guess, had I known some of the enormous changes that were going to happen in my life, I might have been a bit better prepared for them when they came along. 

Geoff Allix   

And how would you sort out different impacts of the program, as you’ve seen results across huge ranges of people over the years? 

George Jelinek   

It relates a little bit to what you asked me in the last session, Geoff, but the words recovering and overcoming and so on. We often sort of, people tend to occasionally get a bit focused on those as being the principal and main goals of the program. And that some of the best things I’ve seen have been in people who didn’t physically get better. So I mean, I guess a good example is someone who came to the program very early on when I first started running the retreats, who was using a wheelchair and had had MS for 25 years, and was very disabled and was very depressed and came with a partner who was doing everything for her and was finding it clearly very difficult, as is expected. And she he went through the program, and each day a sort of the interaction with people on the the support he was getting from others the the sort of sense that she might develop some control over this process of inexorable deterioration. You can see that sort of veil starting to lift and I saw her again, at the end of the week, she left looking very different than when she had arrived. But I saw her again, some months and then years later, and she was still using a wheelchair to get around and she’s still clearly was very disabled. But for me, there was this sort of radiance coming from her, she had this enormous energy and joy that came out of her and she was just surrounded by people at this event that I particularly recall, where everyone just wanted to talk to her and interact with her. And it made me realize that actually her life had improved dramatically, without really, in a sense, having overcome or overcoming or recovering any physical function. And it started to make me aware of the sort of breadth of outcomes that people can get from adopting this program that aren’t necessarily linked to physical recovery. And of course, you know, when you think about the degree of damage that the central nervous system must have suffered, for people who have very profound disability after 20 or 30 years, it’s probably unrealistic to think that we’re going to reverse much of that. But there are other ways in which life can improve significantly as it did for her. And she was now connected, she was vibrant, she was alive, she was no longer depressed. She said she had her fatigue lifted. And I thought, now there’s an outcome worth celebrating, even though it doesn’t quite fit into some of the preconceived ideas we might have about overcoming or recovering. 

Geoff Allix   

I think that’s when we came up with the name of the podcast, Living Well with Ms. We spent a lot of time in meetings and going back and forth. And that was one of the things I felt that we’ve had all sorts of different people with different disability levels, but most of those people are living well. They’re having a good life. And so a good life doesn’t necessarily mean you’re running a four minute mile. 

George Jelinek   

Yeah, it’s great to celebrate the people at that end of the spectrum, of course, but equally, there are people like this woman who, really sick in my mind. I’ve seen many, many such instances now that I’m sort of more attuned to that. And I mean, you’re right, it’s about living well, and about life improving. 

Geoff Allix   

And because the program has been going on for quite a long time now, is there any additional or even conflicting evidence that’s been discovered since you founded the Overcoming MS program that has led to a change in recommendations? 

George Jelinek   

Well, early on, we changed recommendations, a bit in light with the evidence, I guess, people probably who haven’t been on the program a long time would be unaware at the beginning, I was eating fat free dairy, for example. I mean, Swank, said fat free dairy products, were fine. It was really, in 2000 and 2005, a couple of papers came out from very renowned research institutes that showed the risks and dangers of the protein in dairy, which made me modify the program. And then of course, there was fish oil, which we used to recommend either fish oil or flaxseed oil. And our HOLISM work showed no association at all between fish oil consumption and health outcomes. Whereas it showed a very strong association for flaxseed oil. And the sciences evolved around that. So we know now that fish oil that you buy off the shelf at the grocer, basically, most of it is oxidized, it may even be harmful, let alone be healthy. Whereas flaxseed oil, we know is usually very carefully stored and looked after properly. And so you get the direct benefits of the Omega threes without all that oxidation going on. I mean, they’re the sort of two obvious ones that that sprang to mind, where we’ve actually made significant changes to the program. But equally, there are things that come along all the time. And I mean, that is the nature of a research-based program, that this is based on the best available evidence, and the best available evidence is always changing. There’s more coming out all the time. And we’re starting to hear more, for instance, about intermittent fasting. And in the end, there may come a time when there’s enough data to recommend that as part of the program, again, as a choice, some people won’t want to adopt that, others will. There’s stuff in the literature now about cryotherapy about cold, regular exposure to cold, and some people have already adopted that. But, again, these things are in their infancy, really, and we aren’t at the point where I think it’s sensible to adopt it as a mainstream recommendation in the program. But like all evidence-based programs, the evidence keeps accumulating, the program will keep evolving, and that’s how it should be. 

Geoff Allix   

So I mean, I think that’s a key point you made there about the evidence. So I think there are quite a lot of people who are implementing intermittent fasting and cryotherapy. But the program won’t change until there is actually a level of evidence. So, you know, if it’s something we think, well, I think that might be helping and actually feel better for that. That’s great, but it’s not gonna go into the program. It is an evidence based program, you’re not going to change that until there is the evidence to back it up. Is that the case? 

George Jelinek   

And it has to pass a certain threshold really, to be credible enough to warrant changing the program for. 

Geoff Allix   

Okay, it’s very interesting. So final question. So when it’s hard enough to do everything in 10 minutes, but I’ve been throwing this question to ask you, how would you explain the OMS program to a stranger in one minute to get them on board? 

George Jelinek   

Oh, golly, that’s that’s a task. Okay. Well, it’s a program that involves changing a lot of your bad lifestyle habits into good lifestyle habits. So that you modify the risks of deteriorating from this illness. So there’s no guarantees, but if you can modify the risks, and there’s a good science on which factors cause the illness to progress, if you can modify those, then you give yourself every chance of having the best possible outcome. And these are generally diet, exercise, stress, sunlight and vitamin D. They’re really the sort of key planks. 

Geoff Allix   

Okay, and I think that’s about a minute. Yeah. Thank you very much for joining us GeorgeJellinek.  

George Jelinek   

Thanks, Geoff.