ECTRIMS 2024 – Insight into the latest MS research

03:15 Overview of ECTRIMS

05:12 Brett Drummond’s introduction and background

10:50 Tolebrutinib trial and BTK inhibitors

12:56 Hercules trial and neurodegeneration

22:24 Ongoing clinical trials in remyelination, including the Cambridge trial

30:38 Biomarkers for measuring disease progression and treatment effectiveness

36:45 D-Lay MS trial and Vitamin D

39:10 ECTRIMS Patient Community Day

41:22 Diet and physical activity

42:07 Diversity in clinical trials

46:36 Overcoming MS poster on the role of uncertainty in symptom management and maintenance

51:00 Patient-centric research

51:44 Primary Progressive MS

52:48 Lifestyle medicine including diet and physical activity

59:12 The use of Artificial Intelligence for MS research and treatment

01:00:56 The gut microbiome and its influence on MS

01:03:40 How patients are involved at MS and if anyone can attend

01:12:51 Biomarkers

01:15:46 Personalised medicine and the Overcoming MS Program

01:17:09 How Tolnebrutinib is administered

01:18:12 High dose of Vitamin D in the D-LAY MS trial

01:18:52 Treatment cost and accessibility

01:20:39 Joining research studies and trials

01:22:36 Research findings in MS and employment

01:23:11 Advances in MS research and treatment to be optimistic about

Alex Holden

Alex joined the Overcoming MS charity as Chief Executive Officer (CEO) in 2023. She has over 20 years’ experience across the voluntary and corporate sector, previously as Deputy CEO at Target Ovarian Cancer. Alex has worked in the UK, Scandinavia and Australia for organisations as diverse as Mencap, Bupa, Virgin Media, Westpac Bank and GE. She has also held voluntary roles as a trustee for the Twins Trust, a member of NCT’s Voluntary Income Advisory Group, and is currently a trustee for Hitchin Girls’ School in the UK.

Dr Phil Startin

After a DPhil in Quantum Physics, Phil left his academic roots for a more peripatetic career in management consulting, initially with Price Waterhouse. After travelling the world for both work and pleasure, including a two-year assignment in Geneva, Phil was diagnosed with Primary Progressive MS in 2007. In 2011, Phil discovered the Overcoming MS Program, and coupled with his earlier discovery of mindfulness meditation, this awakened a whole new area of his life. With training and supervision from Bangor University, he now teaches the eight-week mindfulness-based stress reduction (MBSR) course to people with MS and to the general community on a pro-bono basis, and delivers the mind-body component of the Overcoming MS UK retreats. Phil is a trustee for MS-UK and wrote an article on the first Overcoming MS UK retreat in 2013, which he attended, for their New Pathways magazine. Phil is completely convinced that the Overcoming MS Program and mindfulness have positively affected the trajectory of his MS.

Brett Drummond

Brett has more than 15 years experience in MS research, having pursued graduate and post-graduate studies as a laboratory scientist at the University of Melbourne. MStranslate was developed as a result of Brett’s desire to continue contributing to the MS community beyond his work as a scientist. His knowledge of MS and his talent for science communication has been recognised worldwide. Since 2022, this recognition has included his appointment as host of the official European Committee for Treatment and Research In Multiple Sclerosis (ECTRIMS) podcast series.

Alex Holden  00:23

Welcome back to the living well with MS webinar series five. My name is Alex Holden. I’m the chief executive of Overcoming MS, joining you from the UK, where anyone else in the UK will know we are going through some horrendous weather at the moment, and Brett will be joining us from Australia and probably tell us about his heat wave that I know that they’re struggling with over there. So you can’t win either way. Thank you for joining today’s webinar. So I’m delighted to welcome back Brett Drummond from MS Translate alongside Dr Phil Startin, who is one of our Overcoming MS facilitators, who I was fortunate enough to attend ECTRIMS conference with a couple of months ago. So we’ll be discussing the latest research highlights from this year’s conference, along with our own insights on what this means for the MS community. So before we get started, I’ll run through a bit of housekeeping just to keep the webinar running as smoothly as possible for you. You’ll notice that the webinar is being recorded, and you’ll receive a link via Zoom for people to access the recording next week. So welcome those of you who are watching this back, not in real time, because this is a Zoom webinar, you’ll only be able to see our guest speakers. However, it is still an interactive session, so you’re still able to ask a question using the Q and A tab on your screen. So please do submit questions, and we’ll come to those when we get to the Q and A Q and A section in the latter part of the webinar. So obviously, note that our speakers cannot comment,we can’t advise on any individual circumstances. We can’t give medical advice. So do, please try to keep your questions generalized so that everybody can benefit from the answer. If you do experience technical problems within the webinar, best advice is to try exiting, re entering using the link in your email. We do recommend using a Chrome browser to access the webinars. Is generally the best way where you’ll get the best experience. We’ve tried to make the webinar as accessible as possible. So today we’re using subtitles, which you may see at the bottom of your screen. You can turn these on and off by clicking the CC option, and as you exit the webinar in an hour and 15 minutes time, you’ll see a short survey pop up automatically. So we really do appreciate your feedback. It helps us shape future webinars. That helps us actually get funding for the webinar, and it helps us design our events going forward. So housekeeping done. Let’s start with what is ECTRIMS. I know some of you have attended our previous webinars with Brett, but for new people, you may find it useful to have a bit of background on what it is and why we’re talking about it. ECTRIMS is the European Committee for Treatment and Research in Multiple Sclerosis. So this year was the 40th Congress that took place in Copenhagen, where there was 8,500 delegates from all corners of the world that came together for a range of speakers, scientific sessions, educational sessions, networking and a patient information session for people with MS as well. So ECTRIMS is a big deal. All the key thinkers and influences in MS circles, are there. Your neurologist, your MS nurse may well have been there. Ask them. The latest research studies are announced there. And in fact, actually, even the Danish queen was there, which caused a ripple of excitement, as she is the patron of the main Danish MS charity. So she sort of did the main introduction at the beginning and opened the event. It’s also the place where people working in MS fields come together, share ideas, share best practice, so often in the way of posters where you sort of demonstrate your findings from your research study on a large a one sheet. So we were delighted this year that Overcoming MS, we had a post accepted for display, written by Phil, who’s joining us on the webinar today, and two of our other facilitators, Dr Rachael Hunter and Dr Johnny White, who you may have met through our events. So Phil’s going to tell us a bit more about that shortly as well. But first, let’s welcome Brett to the virtual stage to share his main thoughts from the conference.

 

Brett Drummond  04:51

Thanks, Alex. Thanks for the introduction. It’s a pleasure to be here again. I think this is my third year in a row of doing these ECTRIMS highlights and. As Alex said, I am joining you from Australia, Melbourne, Australia. So it’s just ticked over 6am here, so the heat hasn’t hit yet, actually, so it’s quite nice to be up at this time. You can see a little bit of the Melbourne skyline in the background, but what I will do is just share through my slides, so hopefully everyone can see these now. So as Alex said, I’m going to be giving a bit of a review of some of the highlights of the ECTRIMS 2024 meeting, understanding that there may be some people on the call who haven’t necessarily heard from me before. I’m just going to start with a very quick background into who I am and why I’m here talking to you about ECTRIMS and about the latest in MS research. So as Alex said, I’m from an organization called MS Translate, and MS Translate was formed just over 12 years ago now, in 2012 by myself and my brother Eric. And so my background is in Multiple Sclerosis research. I did that for many, many years, trying to understand what causes the immune system to start to attack the central nervous system, but during my time working in a research lab, I also was getting a background in science communication, and what I really found while I was working in research is that there was this massive gap that existed between people doing the research and the people who were directly impacted by that research. So in my case, people living with MS. In all of the time I was doing research, I think I got about one opportunity to talk to people living with MS about my work. So I’m not going to make this the point of the presentation, because I could talk about this for a really long time, but essentially, we formed MS Translate to try and bridge that gap. And so what MS Translate does is that it provides updates on the latest in Multiple Sclerosis research in a way that is easy to understand. So that uses the science communication background, but importantly, is also accurate. And so that uses the MS research background, because I’m sure I don’t need to tell people on this call that not when you see medical research and science reported in mainstream media, it doesn’t always necessarily have the highest level of accuracy to it, and everything you read is the new potential cure. And we all know that that’s not necessarily the case with all of these, all of these updates. So if you want to hear more from MS Translate, you can find us online. Just search for MS translate basically on any of your social media channels, and Alex has already done a really great job of this, so I don’t really need to do too much, but on this slide. But just to to reiterate what what Alex said so ECTRIMS, or the European Committee for the Treatment and Research into Multiple Sclerosis, is an annual conference that happens where roughly 8500 people from around the world, from different parts of the MS community. So we have neurologists, we have researchers, we have MS nurses, we have other allied health professionals. We have industry, and now more than ever, we also have people living with MS coming to the conference to talk about the latest in MS research. It’s a really important meeting because this is where people can not only hear about what’s going on and hear directly from the source in terms of the most interesting research that’s happening, but also it provides a really great opportunity for new collaborations to be formed and for people to start to discuss how they can work together to really accelerate progress and make sure that we’re getting to the answers that we need to improve the lives of people living with MS in the the quickest way possible. And if you can guess, be interested. If anyone can guess based on the photo there where ECTRIMS was held in in 2024 but we were in Copenhagen this year for this I as well as attending as part of MS Translate, I have a couple of roles with ECTRIMS, one I’m going to talk about at the end of this presentation, but as well as that one, and I touched on this last year, but I’m not going to touch on it too much this year, in 2022 in Amsterdam, ECTRIMS launched an official ECTRIMS podcast where we talk about the latest research, and I’m actually the host of that podcast. Now those podcasts are aimed at people attending the conference, so they tend to be a little bit more technical in nature, but a number of the episodes are still really interesting. So I encourage you to go and listen to those podcasts as well, if listening to podcasts about MS research is something that you’re interested in, but with that background done. I want to go into some of the highlights from the conference this year. In terms of research, I’ve kept it relatively brief. I’ve also tried to make sure that I focused on some topics that I didn’t necessarily discuss last year. But also I want to make sure that there’s plenty of time for Q and A and to answer any of the questions that you might have on what’s happening in the MS research field and what was discussed at the conference, because I know that the topics you’re interested in might not necessarily be the topics that we talk about to start with here. So probably the biggest news to come out of Copenhagen 2024 aas the tolebrutinib trial results. So this was in the late breaking session. It was actually the last presentation at the conference. And so won’t go into too much detail in terms of what it is, but this is a new medication or a new part of a new class of medications for MS called BTK inhibitors. So BTK just stands for Bruton tyrosine kinase. It’s basically an enzyme in the body. Enzymes are things that help chemical reactions in the body take place. And it’s been found that if you can stop that enzyme from working, that may have benefits for people living with MS, it stops important processes in the disease. There’s been a number of different ones of these BTK inhibitors trialed in MS, we actually have four different ones that have been trialed with mixed success. So there was quite a bit of excitement around these results, because we’d had a bit of an indication before the conference that there may be maybe something positive coming out of this, which was interesting, because not long before the conference, we had another one of these classes of medication fail a phase three trial, and there’d also been a few safety concerns with some of these medications. But so essentially, there were two different trials that were presented using this medication. One was in people with relapsing remitting multiple sclerosis. So those were the Gemini one and Gemini two trials, if you want to try and Google these and find them, and the results of that trial was unsuccessful, though, I should really say that was unsuccessful, because I will explain a little bit around some of those results that it may not necessarily be the end of the road for that medication in people with relapsing remitting MS, but the very exciting results is came from the Hercules trial, and this was in a group of people with secondary progressive multiple sclerosis. But importantly, these were people with non relapsing, secondary, progressive multiple sclerosis, and I’m going to explain why that’s particularly important in a second. And the fantastic news there is that the results were positive, so they met their primary endpoints in that trial. So I want to explain why that’s particularly important. And to do that, we kind of need to go a little bit back in terms of our understanding of MS and sort of back to what we thought was happening, really when I started MS research, not to age myself, but in in 2006 so this is a, this is an image that I saw a lot when I was when I was starting out doing MS work. And so this was our sort of traditional view as to what MS looked like, or the the journey of a person living with MS. Now, hopefully you can all see my cursor on the screen as I try and indicate a few things here. So the majority of people diagnosed with MS are diagnosed with relapsing remitting MS are RMS. And so we around 90% of people, and that’s characterized by these periods where relapses or attacks can happen, where you get a worsening of neurological function, and then you’ll go back into periods of remission. Things get a little bit better, never back to where they were, but things get better, and. Then everything’s stable for a while, and then you know, you may have another attack. And this journey is very different for each person living with MS in terms of how often these attacks happen, how long their remissions last for. And we know that the main driver of what’s happening during this phase, or what we thought we knew is that the main driver of what’s happening here is inflammation, and so the reason why essentially all of the existing medications that we have for MS are effective in relapsing remitting Multiple Sclerosis is that they really target that inflammatory process. So and then what we sort of thought happened, and back at the time, it was sort of 50% of people living with MS would progress to secondary progressive MS within 10 years of diagnosis. That’s definitely changed now with the therapies that have come in or people are diagnosed with with Primary Progressive MS, which is around 10% of people diagnosed, you see that there’s a change here in terms of, instead of this, these periods of remission, we just have a constant sort of deterioration of neurological function. Now the slope of that line is very different for different people, and this is obviously a very simplified version, because what we know, as well as that a number of people during this phase can also still have have relapses and ongoing inflammatory activity. But the biggest shift here is that during that progressive phase, we talked about the main driver now having not being inflammation, but now being neurodegeneration. And so the Holy Grail, or what we’ve been trying to search for, is therapies that can act on that neurodegenerative component. And we don’t really have anything to this point that does that. Now, this is what we thought was happening. Over the last few years, we’ve realized that this is probably too simplified and not exactly what is is going on. And so I’m about to show what’s going to look like a really complicated diagram, but I’m going to talk through the key points of what you need from it, which is only a few things, but a few years ago, this concept of peer was starting to be understood. You may have heard of the term PIRA before peer stands for Progression, Independent of Relapse Activities. It’s also sometimes referred to as smoldering MS, as the other term that you might have heard for it. But so as I said, this is going to look complicated, and I’m going to show a slightly cleaner version of this next but if I just highlight a few things on here, this purple line here is basically what I showed you before. So you can see the relapsing remitting component here. So there’s relapses, remissions going on. And then you can see that, then you start to get, you know, a worsening, a more progressive version of the disease here. What’s important on this is this blue part happening in the background, and that’s really the neurodegeneration part. And so if you remember, I scroll back, that’s what we were saying was happening here in the progressive component. What we now know is that that is actually happening from the very beginning of the disease. So this isn’t something that just kicks in later in the disease. It’s happening right at the very start. And that’s a little bit cleaner, a little bit cleaner, on this diagram. So here again, you can see this is sort of the disability here in the purple line, you can see these periods of attacks, again, going on. But this blue line here is this period of neurodegeneration. So back when I started, we wouldn’t have thought that this blue line would have started until, say, sort of here on the diagram, and now we know that it’s happening here. Now why is this important? With those clinical trial results that I was talking about before, well, what if you remember the people with secondary progressive MS that I was talking about, I said that they were all non relapsing secondary progressive MS. And so while we’ve had a couple of medications that have shown some success in secondary progressive MS. Generally, that’s been in people with relapsing secondary progressive MS, so they still have that inflammatory component going on. And so the medication has been targeting this. This is the first case of seeing a successful medication in a group that doesn’t have that inflammatory activity, which indicates to us that this medication is actually targeting that neurodegenerative component. And so this is actually super exciting, if this is the first medication that’s able to do that. Now the reason that I say that the relapsing remitting trial is maybe not finished yet is that the main goal that they were looking for was more around, say, the disability progression and some of the relapse rates that they were looking at. There is some evidence from that trial suggesting that there may have also been some benefits on this neurodegeneration. And remember that this is happening in the background of people living with relapsing remitting MS as well. So this is, this was very exciting, because this is potentially the first therapy that’s able to target that, and that is a really big thing. So that was that was very exciting. I moved from that to, unfortunately, the other major trial results that were announced at ECTRIMS 2024 which was the results of the MS stat two trial, which was a trial that was largely run through the UK has been run for a number of years now. So this was a phase three clinical trial looking at the effectiveness of Simvastatin. So Simvastatin is a commonly used medication to treat high cholesterol, and there had been a lot of early data from early clinical trials, but also pre clinical data in different models, showing that this may be effective in MS as well. There was some indication that could have some anti inflammatory effects, and we also know that high cholesterol levels are detrimental in people living with MS. So there was some hope that this would be beneficial, not going to spend too much time talking about this, because the results across every measure in that trial was negative. So unfortunately, this trial failed, failed to the point where this won’t be pursued any further, but I think raised the importance of also presenting negative trials at a conference. I think too often, when things don’t work, we tend not to talk about them. Obviously, we like to talk about the successes and not the failures. But it is really important that the failures are communicated as well, because now people won’t go and continue to try and look into this medication, so we’re not wasting time and money on research that we know is not going to not going to work. So yes, so that was one, that was the other big clinical trial results that came out of the conference, moving on from clinical trials that have been completed to clinical trials that are ongoing, the the biggest one at the moment, or sorry, I should say that that one of the other topics that is of key interest to people living with MS is re myelination, so the tolebrutinib results, which are dealing with that neuron for the neurodegenerative component, that’s obviously one of the big key areas in terms of moving forward in the next stage of managing MS. The other one really is, is Myelin repair. So while we can slow the disease with our existing therapies, what none of the therapies do at the moment is actually repair that damage that exists. And so that’s a big, a big focus area. And biggest trial that’s going on at the moment is happening at the University of Cambridge, and they’re testing metformin and Clementine in combination to see whether or not they are effective at at being able to repair myelin in a group of people with relapsing or meaning ms little plug. So they expect the results of that to be done by roughly at ECTRIMS 2025 so at around about third quarter of next year, around about September next year. But you can follow them on Facebook. Cambridge Clinical Multiple Sclerosis Research on Facebook, we actually work closely with them to help communicate their research outcomes, so you will see updates on that trial on that page. So if you want to follow that trial, we know a lot of people are interested in that trial, I do recommend that you go and follow that page as well to be able to find to be able to find out what’s going on, but to go into that a little bit more to explain what’s going on, really what’s happening. So there is that one trial, but there’s a lot of other work happening in the remyelination space, and really what that is about is trying to understand what factors impact on myelin repair in P. People living with MS. So to just delve into that a little bit more, we know that that early in disease people living with MS can repair the damage that occurs. We also know that that myelin damage can happen in a lot of different conditions. So if you get a concussion, if you have an infection, these things can all cause damage to myelin, but they’re all very easily repaired by the body. It’s just in people living with MS over time that repair potential drops off significantly. And so we’re trying to understand why is that what, what is causing that blockage in that repair process? Because if you can understand that, then that opens up avenues to address that therapeutically. And probably the most promising avenue for that, or what’s been shown to be the most interesting factor that seems to be preventing it is biological aging. Now, biological aging is very different to chronologic chronological age. So chronological age is just how old we are, whereas biological age more has more to do with how old are the cells in our body, essentially. So your biological age can be very different to your chronicle chronological age, and this can be impacted by a number of of different things. And so, as you can see on the right, and I do think this is a graphic that I showed when I did this talk last year. So you may have seen it before, but this sort of summarizes what we’re what I’m talking about here. So if we just focus on the bottom bit to start with, oligodendrocytes, are the cells that are responsible for making myelin in the body, and what happens, and what’s been shown in a number of different things, is that when these cells are young, when you have young oligodendrocytes, they’re quite capable of repairing myelin. However, when these cells get older, they’re much, much worse at being able to to re myelinate or to make new myelin. And so what we what they aim to be able to do in these trials is to sort of slow down that aging process, or reverse the aging process biologically, the aging of these cells. And so to give a little bit of background in terms of where this trial has come from, they actually started looking at intermittent fasting, because intermittent fasting has been shown as one of the best ways to slow biological aging. So they had a trial using an animal model of MS, using mice, where they had mice that were intermittent fasting versus mice that ate normally. And the mice that were fasting so they were eating only every second day, they found that when they developed MS, their ability to re myelinate was significantly better than those who were eating normally. And then from that, they then tested the potential of metformin. So Metformin is a drug that has been approved for many years for the treatment of diabetes. It mimics the process of fasting, and they saw in these mice that similarly, on the mice that received Metformin, as to those that that didn’t receive any any drug, the ones on Metformin also were able to re myelinate much better. And so that’s really the rationale for using Metformin in that clinical trial that I talked about to try and slow that that aging process. Clemistine, which is the other drug that’s being used in there was one that was found by the University of California San Francisco in some of the work they were doing, and that also shows an ability to re myelinate it works in a slightly different way. So they’re using the trial to test both of them in combination to see if you get a better effect. The other sense that we get from the fact that aging probably has an important role here to play in in remyelination is that we know in pediatric MS, so in children diagnosed with MS, or people younger than 18 diagnosed with MS, their repair potential is really, really good. So they they are actually able to repair that damage really well, again, suggesting that biological age seems to have a role here. So these are really exciting results. Remyelination is really the next big thing in MS. Excitingly when we talk to people working in this space, they are very confident that we will find an effective remyelination therapy. It’s just a matter of, it’s not a matter of if, just a matter of when, until we get there. And people are hopeful that, you know, we should be in sort of major clinical trials for this in the not too distant future. And so sorry, I can also say that people are raising hands. I’m well, we will be doing Q and A at the end, I believe. And there is a Q and A function, I think, somewhere where you can drop questions, but I promise I will answer all of the questions at the at the end. So the other one of the other big things that was talked about at the conference this year were around biomarkers. So biomarkers are essentially something that we can use to give an idea as to what’s happening in the disease. So, you know, we have a best example of a biomarker at the moment, I guess, is things that we get from imaging. Obviously, we have MRIs, where we can look for new lesions and things like that. That kind of like a biomarker. But we would prefer to be able to get an idea of what’s happening with something simpler than having an MRI. I don’t think I need to tell this audience that you know going in and having MRIs isn’t the most pleasant experience, and also not something that you can do on a daily or weekly basis. And biomarkers will have a number of benefits. We want biomarkers to really accurately be able to measure disease progression and to measure treatment effectiveness. So if we were to have an effective biomarker that was, say, in the blood or the urine, probably most likely the blood. You know what you could be doing when you started a new treatment, or when you were on a treatment, is having regular blood tests and looking for this biomarker to see if it was, if it was working, and to get a really early indication as to when it stopped working. Because we know that obviously the more time you can spend on an effective therapy, and the earlier you can get on an effective therapy, the better your long term outcomes. But as well as that, I mean, we need, as well as disease things that measure disease progression and disease activity, we’re also looking for biomarkers for other things. And so I just recorded a podcast the other day, which isn’t yet released, but will be coming out soon, talking about fatigue in people living with MS. And one of the things that we talked about in that is needing an effective biomarker to be able to measure fatigue, because we know that there are this is obviously fatigue is a big thing that affects the quality of life of people within living with MS, but we don’t really have a great way of being able to measure that in any sort of trials. If we’re to develop interventions to try and help with that, we don’t have a great way other than, you know, reported outcomes coming from people living with MS now, they obviously have a place. They’re also really important. But what we need to make sure is that we’re not missing potentially important information around this. And just to digress a little bit for to talk about fatigue, there was a clinical trial for from a number of years ago now, probably six to seven years ago, for a potential therapy, one of the benefits of the therapy seemed to be quite a significant improvement in fatigue. But the way the study was set up largely around how that was captured, was getting outcomes measured from from people living with MS, so you know, how fatigued do you feel on a scale asking questions around that. And what they found was that before the therapy, if you looked at the fatigue scores, that people were rating themselves before they started the therapy, and during and after the therapy, there wasn’t a huge change in terms of the numbers. However, what was happening was that there was significantly more activity that the person was undertaking when they were on the therapy. So while the person might have said they were eight out of 10 in terms of their fatigue at the start of the trial, they were an eight out of 10, where, basically, they were able to get out of bed and, you know, spend the day on the couch, needing to have a sleep in the afternoon, not able to do too much. Whereas, when they were on the trial and on the therapy, they were still an eight out of 10, but they were able to, you know, get up, vacuum, clean the house, go to the supermarket, to the grocery shopping, go for a long walk, all of those things that. Getting to the same level of tiredness, but their activity levels was much higher, showing that clearly the therapy was having an impact on on fatigue. It just wasn’t captured in terms of that. And so we really need effective and accurate biomarkers for lots of different things in MS research in terms of disease activity, just to I’m not going to go into this in in too much detail and talk about the the results of this, but there are two that you may hear about that are looking the most promising at the moment. So neurofilament light chain is probably one of the ones that has had the most attention for quite a period of time. So neurofilament light chain is basically a part of the nerves, part of the myelin that gets released into the bloodstream when there is damage to that myelin sheath. So if you were to look at blood samples across time, you would see little bits of neurofilament light chain. But if there was a relapse or something happening where you’ve got a direct attack, you would expect the value of NFL to jump in the blood. So if you’re routinely monitoring the blood and looking at at NFL, that would give you an indication as to you know whether a relapse is happening. It may even give you a really early indication that a relapse is happening. The other one is Glial fibrillary acidic protein or GFAP, that looks like it might be more specific. So there was some really interesting data on that this year that shows that it actually may be a much more sensitive marker of what’s going on. So that’s one that will follow closely over the next 12 months to see how that develops. So also, just to talk about another trial. So Vitamin D has been an interesting thing that’s been discussed in MS research for again, as long as I can remember being involved, and one of the earliest figures that I remember seeing when I started working in MS was a global map that shows that the closer you are to the equator, the lower your incidence of MS. Less people get MS if they live close to the equator, and then the further you move away from that, the the higher the risk of developing MS, interestingly, and just as a side note to that, it really seems to be where you live for the first 10 to 15 years of your life. After that, it doesn’t seem to really matter where you are your risk is. Your risk is already in but because of that, people thought it was sun exposure and thought it was vitamin D, and so there’s been a lot of work done on this. There was results presented from a French trial called the Delay MS trial. And so this was people with clinically isolated syndrome or CIS so basically where there’s just an initial just a singular lesion. So not yet MS, not yet multiple lesions, but the precursor to that so they took people with that who had low levels of vitamin D, did a randomized control trial where some of them got high dose vitamin D, and basically asking the question of whether that could slow, how long it took them to develop MS. The outcome of that was that the high dose vitamin D was safe and well tolerated from everyone that took it, but also that it seemed to have quite a significant impact on reducing disease activity. So the outcome from from that, in terms of the conclusions of the researchers that did it, is that high dose vitamin D could be useful add on therapy for people, especially early in their disease process. Now the results of Vitamin D is certainly quite mixed, so it’ll be interesting to see how that plays out when asked about that during the conference, as to why this one was positive when others have been negative, the thought was that perhaps they were looking at the wrong outcome measure in terms of what they were doing looking more relapses. So yes, that’ll be interesting to follow as well. But certainly I know there’s a lot of interest from people living with MS about vitamin D. So that was an interesting update. So the last thing that I want to finish on, and Alex mentioned this at the start as well, is that one of the best additions to the ECTRIMS conference is that since 2022 at the end of the conference, there is now the ECTRIMS patient community day. And so this is around communicating outcomes to people living with MS about the highlights from the conference. So essentially what we’re doing today, but from directly from the conference. So usually it happens the first two years. It happens the day after the conference finished. This year, it happened the afternoon of the conference finishing. And for me, it was quite an honor that this year I was heavily involved in the planning of that event. We made some quite significant changes to how that day was was run. Previously it had been people giving presentations, whereas this year, we just had a panel discussion around a number of topics that we know are of interest to people living with MS. So I was involved in the planning on that day, and I also hosted the event. So it was really exciting. We had more than 300 people join us in person in Copenhagen, and we also had well over 1000 people online join us as well during that. And I’m not going to go through too much of these now, in the interest of time, I don’t know quite how I’m going, but I’m probably used up my my 30 minutes, and I want to make sure we have plenty of times for for questions, but so you’re aware, you can all of the ECTRIMS patient community day was all recorded. It is available online in many different languages, so you can access that through the ECTRIMS website, or just go to YouTube directly and type in ECTRIMS patient community day, to give you an idea as to some of the topics that we talked about lifestyle modifications was one that definitely was talked about so diet and exercise and the role that they play in helping to manage MS, talked about this a lot last year, really at this point, the guidance and what the research is showing is yes, diet is important. Yes, exercise is important in terms of diet, a healthy, balanced diet that has, you know, a focus on minimizing inflammatory foods and maximizing anti inflammatory foods is important. And exercise and finding an exercise that works for you as early as possible to maintain function rather than try and restore function after it’s lost. Is important. Diversity was another big topic that came up. There is definitely an understanding now that clinical trials in particular, and research studies for a long time probably haven’t been picking up the diversity of people living with MS. And so, you know, we know that there are different outcomes, social determinants of health, that can have an impact on outcomes for people living with MS. So that’s not just things like race and ethnicity, but also socio economic status, education level, these can all have a have an impact. So discussion around that diagnostic criteria. So there are new diagnostic criteria coming out probably next year. Now we’ve been they’ve sort of been organized, but we’re waiting for the publication on that. Probably not as interesting to people who have already been diagnosed with MS, but certainly an important thing in the in the field, and risk factors, both in terms of genetics and environmental risk factors, haven’t talked about EBV at all in this presentation. Happy to answer any questions about EBV. It’s obviously still a big topic in MS research. It’s our leading risk factor for MS, but there are a number of other ones in there as well, smoking and genetic ones that are there as an aside from being able to watch that so during that we obviously had discussions with panel members. The panel members were fantastic. We had some really exciting people from throughout the world and through many different roles in the MS community. So it’s a fantastic, fantastic opportunity to get to hear from from them. We answered questions on the day from the online audience and the in person audience, but we were absolutely bombarded with questions from the online audience. And so what we did, what I did after the event, was went through all of those online questions and wrote responses to those. They are now published on the website as well. So if you want to go and see a lot of questions that came from the audience and the responses to those, they are all there. So that might be an interesting resource as well, as well as the fact that there was an impact report published afterwards that’s also available on the website. So this goes through and discusses each of the topics that were discussed on the day, and provides the key highlights from each of those quotes from different people involved, as well as people who attended the event. So that might also be of interest to read through that and with that, if I’m correct, that is the end of the things that I wanted to talk about. I. But yeah, obviously, when we get to the Q and A pot, happy to answer any questions. Please follow MS Translate online. You can also ask me questions after the session through any of those platforms. But thank you very much for listening. I’ll stop sharing this now. Go to here. I think I’m handing back to Alex, if I’m not incorrect.

 

Alex Holden  45:28

Thank you. Brett, so many questions coming through. I think I should have mentioned at the beginning, Jake is behind the scenes answering people’s questions and doing a fantastic job of filtering them through for us to do the Q and A shortly, but first we have the delight of Phil giving some of his insight from action. So Phil, I’ll hand over to you.

 

Phil Startin  45:54

That’s great. Thanks very, very much, Alex and yeah, brilliant. Brett, that was just a brilliant talk and presentation. So I’ll keep my piece really quite short, because I can see, yeah, there’s loads of questions that have come in, and be great to get through as many of these as possible today. And Alex, as I’m going through my brief talk, if you want to kind of join me at any point to give some of your experiences of the conference as well, that’d be great. So as Alex mentioned that the reason I was there with my co facilitator, Rachael Hunter, was because we had a poster that we proposed and was sent to the conference early last year, early this year, and it was accepted, and it was fantastic. And let me just I’ll just say a few words about the poster first, before I talk about some of my key observations and insights from the conference itself. So let me just quickly, just share a couple of slides with you. So yes, Rachael and I actually put together thoughts for this poster, actually during the Overcoming MS retreat in March earlier this year, and we had some spare time between sessions. We thought it’d be great to submit a poster. And the thing that we’ve been discussing around this time was just, I think, for all of us with MS, regardless of when we were diagnosed or the type of MS we have, the thing we all live with is this, this uncertainty, this unpredictability about only just the condition. So, I mean, if you’ve just been diagnosed, just had a relapse, how long is it is going to going to last? Are you going to fully recover? Then when you have are you going to go on into any DMT? Are those going to work even what’s available for you, and what about the kind of the long term, sort of prognosis for the condition. Are you going to physically, cognitively get worse, and you just don’t know. You just don’t know with this condition. But also, then, how is that going to affect you as an individual? How is it going to affect your relationships, relationships with your partner, with your children, your friends, your family, your job. So it’s a really, really tough one when you’re living, I think, particularly with this condition, where say, there’s just so much uncertainty around how this condition is going to play out for you as an individual and your wider family, family as well. What can that can then drive is increased levels anxiety can take down our mood levels. That actually takes away almost our sense of agency, which feels really trapped by this condition. So it increases this sense of sense of learned helplessness, which then just adds to this whole level of unpredictability and uncertainty. So what Rachael and I were suggesting, and this is really what we do as part of the Overcoming MS program, is what we can all do is implement some self management strategy, and those are anti inflammatory so by exercising, by meditating, which is something I teach, and we privy our social connections, eating a low inflammatory diet, we can reduce the inflammation levels in our bodies, which can actually has been shown to have a definite impact on slowing the progression, slowing the number of relapses we have, which, and that’s increases our sense of agency and the right control we have over our condition, and which then really just improves our overall quality of life, brings down our sense of learned helplessness. So those were kind of the key messages that the paper was. The poster was trying to bring out and say it was great to have that there and to go along to the conference. I’ll just stopped sharing now, and yeah, just some, some of my insights from the conference. And it was actually such a fantastic experience. And as Alex was saying there were kind of over 8000 people there, and these were some of the most senior, most qualified researchers into MS and MS healthcare providers from around the world. I mean, some really, really big, big names. And there was, there’s a chap there called Fred Lublin, whose name you might have heard of, but he was actually chair at the committee that originally defined the different course, clinical course descriptions for MS. So came with the terms of relapsing eemitting secondary progressive, Primary Progressive MS. He was responsible for that. He gave a couple of brilliant talks. So it was, it was amazing just to have the this, this just the sense of expertise there. But I think one of the big things I took away from it, and this was mentioned a few times fairly early on in the conference, was just how good now the treatments and the DMTs are for relapsing remitting MS, they are really, really strong now, and there’s the potential to reduce relapse rates to really quite low levels, and to actually, then also, as things Bret mentioned, delay the onset of secondary progressive MS. So clearly, for a large number of our community, the Overcoming MS community, this is really, really important. So that was that was lovely to hear how much that has really improved. But I think one of the other phrases that I heard a lot of was a lot of the researchers talked about being much more patient centric. And even during the one of the keynote slides at the beginning, there was a slide I went up to a talk about putting patient voices at the heart of our research. And again, it was just so reassuring to hear this from these clinicians, from these scientists. And I know not all of us had great experiences with our neurologists and our healthcare providers. So actually, to see some of the leaders in this field talking about that, that was just absolutely fantastic. So I was really taken away by just really how much almost care and compassion that these researchers, in these scientists had for us with the conditions. So yeah, I really get sensitive, sort of strong sense of empathy there. But I’ve got progressive primary proggressive MS. And was diagnosed about 17 years ago with that. And to be quite honest with you, I’ve been quite frustrated over the years at just how little research has gone on into progressive MS. So again, it was wonderful to see at this conference the number of sessions that actually with explicitly looking at Progressive MS, the pathogenesis of the of the condition, what kind of really underlies it, the PIRA and progression in that sense of relapses that Brett mentioned. So a number of sessions on that. So I finally got the sense that actually the MS scientific community is really turning its focus to this huge, actually unmet need of what to do about this progressive form of this condition, what this sometimes called this, smouldering, form that I know Professor Gavi Giovannoni has talked to talk a lot about recently. So just absolutely fantastic to hear a lot more about that as well. And in addition to these more technical sessions, there were a lot of sessions actually talking about lifestyle medicine, which, again, I was quite surprised to see. So I was expecting it to be really science, science focused. But there was a whole session on exercise. There was a whole session on diet and a number of other areas as well. And looking at those, they were just brilliant. I mean, the exercise session, Professor Dalgas and Motl, they’re both giving presentations in this session. And to my mind, I think these, these guys are the leading professors looking at MS and exercise in the world. I mean, it’s just fantastic to see go those guys there talking about just how effective exercise is and how it can improve physical function for those of us with MS. So that was fantastic section. The diet session was also very good. And there was, there was a scientist there from Monash University that talked about the research that’s been done. And it’s, I mean, it’s interesting that I think one of her quotes was that there’s little basis to recommend a specific MS diet, but there’s a lot to recommend that we should all with MS be following a healthy diet. And there’s a lot more work being been done on that, but she also talked about that. In this session, they talked about diets, not alone. You need to do more than that, so it should be part of a self sufficiency framework for living with MS really, really be lost holistic, which is, again, exactly what what’s Overcoming MS is now, again, just putting the slightly more parochial Overcoming MS hat on. There was, there was a professor from Norway talking about some of some of the studies he’s been doing on fish, and again, people who fish, they’ve been in the study he did show that that had a really positive effect on the trajectory of the condition. But what he also showed was people just eating fish oils didn’t see that same effect. He also then showed some research that then looked at, rather than using fish oils, using plant based Omega three oils, and that did show the similar reduction in inflammatory behavior. Now, as somebody who takes my three tablespoons fulls of flax seed oil every day, which I know is full of ALA, that’s fantastic. So it was, I guess, in terms of me coming away from that, from the conference, yes, it was amazing to hear all these really clever, passionate people talking about MS and the research that’s gone into it, but and somebody with prime progressive MS again reassuring to see that there’s a lot of research being done on it, but there are still and I think, as Brett was saying, there are no DMTs available license for primary progressive or even fully on secondary progressive MS at the moment. There are some in the pipeline. But are those going to happen next week, next year? Probably not, but it’s very clear. And again, it was lovely to hear what the scientists saying, there’s things I can do. And so it’s now been picked up by the subject that by the scientists that actually by eating a healthy diet, by exercising, by looking after our cognition, working on our cognition, we can actually make a huge difference. So, yeah, I came away, actually almost reinvigorated to keep going with the progress with the program, and know that this, yeah, really can make a difference. So, so that was my kind of, I guess, key, key takeaway from this. I don’t know, Alex, did you see anything similar or different?

 

Alex Holden  56:25

I found it fascinating. This is going to sound though I’m sucking up to you because you’re on the call, Phil, I found it fascinating going around the different sessions with you and Rachael, partly because there are so many sessions. There’s six or eight sessions happening at any one time. So there’s an awful lot of content, which Brett does a fantastic job of then summarizing on his podcast at the end of the day, your brain must be working super fast, but having you, me and Rachael, all representing Overcoming MS, I think meant we were able to take in a lot more information, but also the opportunity to then digest it from three slightly different points of view. That you’re coming at it with somebody with meditation training lived experience of MS, Rachael, the clinical psychology also has lived experience of MS, and I’m coming at it from a charity point of view. And we’re all then sort of thinking, right? Well, what do we what do we do with this information? Because it’s great that we go there, but in order to make the best take advantage of that opportunity, it’s what happens with those conversations. And actually, again, all three of us have been very busy since so yes, there’s various other studies about lifestyle. There were lots of conversations about fatigue, exercise, a plug for our own resources, because you mentioned Professor Motl, and he’s done a podcast session for us quite recently. So people can find that on our on our website. But again, we we can link up with those people, and we are linking up with those people. So by having more of us there, the number of conversations since around, joint information, joint sessions, future webinars, information that we can co produce for a website that isn’t just Overcoming MS, but actually is the best of all the global research that’s out there, I think will really benefit the whole community, because there’s a lot of people working on this. So I yeah, I found it the quantity and the quality of the information was overwhelming, but I think in this is now my second year of having gone to actions, I think we did a better job of maybe digesting and working out what we do with the information that than I had done last year. So that was great. And yes, Brett, definitely your podcast helped with that, because it reminded me of the sessions I’d kind of seen, and a bit when you’re busy in them, you’re busy listening, you’re not thinking about and then what? What happens next? Shall we move on? I’m conscious of time. We’ve got a lot of questions, and we may need to come back to some of them and send them around afterwards, but there’s some great questions in there. So thank you very much. And I’m also really enjoying the reactions from everybody popping up on the screen with the thumbs ups and the hearts. So thank you very much for those. Let’s start with a couple of pre submitted questions. So Brett, we saw on the ECTRIMS website, we, I know, presented back. So one of the hot topics was all around artificial intelligence and how we use AI in MS. So what can you tell us about that?

 

Brett Drummond  59:30

Yeah, so it’s definitely a hot topic. There’s lots of different ways that AI is going to be attempted to be used in research and in a lot of different things, and I will say it’s not my area of expertise. A lot of the AI stuff definitely goes over my head. But I think probably one of the biggest ways that’s shown benefits, and one of the most exciting ways, at the moment, is to be used in the imaging space. And so there’s a lot of interest in can we use AI to be looking at MRI images to be able to pick up lesions that potentially we can’t or that radiologists will miss? And so there’s a lot of work that’s being done on that, and that’s been shown to be really positive. So I think that’s something that we might actually see implemented into clinical practice sooner rather than later, especially because we know that there are things and a poster on this around silent lesions and things like that. So there are some interesting things around what we might be able to pick up. And using this technology to help us pick up things earlier is going to be really important. So that’s in terms of the AI space, that’s probably what I think is the most interesting around that.

 

Alex Holden  1:00:43

Yeah, I’ve read some interesting information about that, about the difference between the computer eye versus the human eye, and you almost need both, from what I can gather, because they both interpret slightly differently. You did touch on this, but any more information about the gut microbiome and its influence on MS and the conversations. You did mention that in your presentation, but if you could tell us a bit more?

 

Brett Drummond  1:01:06

Yeah, so it’s certainly, it’s certainly an area of interest. So there is a lot of evidence now suggesting that the gut microbiome might not only be involved in development of MS, but also in progression. There’s been lots of studies that have looked at how does the gut microbiome differ in people living with MS versus healthy controls. There was actually a really interesting study that looked at it, where it took people living together, so it looked at people living with MS, living with a person without MS, and compared to their gut microbiomes across the world. And so we do know that there are pretty consistent differences. So we do see that some of the microorganisms in the gut microbiome are higher in people living with MS than in healthy controls. Some are lower. In terms of why this is the case? What it’s actually doing? We’re not 100% sure yet, but studies have shown that there is an interaction between these gut microbiome and the immune system can affect some of the antibodies that are involved in what’s going on. So yeah, there’s definitely, I think, an interest in better understanding, while there’s evidence showing that there is something going on there, better understanding what is exactly going on and the mechanisms? Is still a question that’s trying to be answered. And then probably around can we, if we know that this is the case, how can we modulate that gut microbiome therapeutically? Now, we probably don’t know what the ideal gut microbiome is yet, but there has been some interesting research looking out of out of the US that looked at one of the bacteria, specifically Prevotella histicola, from memory, there we go. That’s pushing my pushing my brain cells back at this time of the morning to try and remember what very impressive. Well, it’s only impressive if you believe me. No, I’m 99.99% sure that’s right. And looked at what happens if you bring that back to normal levels, and they found in an animal model that definitely had benefits. So, you know, looking at can we adjust the gut microfiber, but gut microbiome to do this, and diet is one way that we know that can affect the gut microbiome. But, you know, working out exactly how we can do that. There’s also been some look at fecal microbial transfers. So, you know, fecal transplants essentially as another way of being able to do this, but yes, it’s certainly an area of interest, but there’s still a long way to go in terms of that to being something that’s that’s going to directly impact on the lives of people living with MS.

 

Alex Holden  1:03:40

Now this is an interesting question around, it’s probably aimed at both of you. So the question is, how are MS patients involved at ECTRIMS, which, again, we’ve touched on with the patient involvement day. And Phil, you’ve sort of given your insight as the person living with MS who’s been and also, can anyone go? I wonder what the question is, as much the difference between someone with a scientific background and a non scientific background is, you know, regardless of whether someone has MS or not and there’s there’s also a slight difference between the pitching of the main conference versus the patient information day, which was more of a translation of that research, yes. What are your thoughts? I mean, essentially, it is open to anyone, isn’t it?

 

Phil Startin  1:04:25

I believe so, yes.

 

Brett Drummond  1:04:28

Definitely, anyone can, definitely, anyone can go. I will say that the there’s obviously a registration cost associated. There is a cost which you don’t have with the patient community day. The patient community day is free for everyone to attend, to attend the conference itself. I can’t remember the exact number, but it’s not necessarily super cheap. It could be 800 to 1000 euros or something like that, to attend the conference somewhere in that facility. So it’s difficult in that space. I mean, I loved hearing what you said about. Yeah, being there, Phil, I think that’s those, those comments are what we want to hear. Because, you know, obviously for me, I think I straddle this space really interestingly, and that I obviously have the research background, but now I’m really heavily linked to trying to communicate with people living with MS. So you know, the idea of having people with the lived experience in the conference is really important. And I think having people in the scientific sessions there is value to that, because you will have come up, I mean, you obviously also have the ability to understand the science there. But you know, the questions that we get from people with a lived experience is really important to help shape the research direction better, linking these two parts of the community together that aren’t at all separate can only benefit things. So I think that the better we can, the better ways we can find to have people living with MS involved in in research in general, but also in the conferences, as being the time of the year when we have the most people coming together to discuss it, is really important. But yeah, the I think the patient community day, in terms of being able to interact with it and hear what’s going on is is a free way where it’s also provided in a less scientific format to make it a bit more accessible. But Phil, I don’t know if you’ve got more more thoughts on that?

 

Phil Startin  1:06:20

Yeah, no thanks. Brett, yeah. I mean, certainly some of the science sections were really kind of full on scientific and you would definitely would need, I think, probably a medical background to really get probably the most out of those sessions. But they were still also really good in just, I mean, I went to some of the really scientific sessions on PIRA and progressive MS, and they talk through the different processes that underpin PIRA or Smoldering MS, and how they are distinct and probably not awfully defined yet, and how potentially you’ll have different biomarkers for each of them. And mean, ultimately, when, when we do get to potentially diagnose and we look for treatments, we won’t just be one treatment or one treatment looking, looking at one process. So So focal information, as as is in relapsing MS, that could be several different treatments, looking for different aspects of that, the smoldering MS or the Pira. So it was really interesting to see, to see some of that, and get, get some of those insights, and simply some of the more therapy sessions, so looking at lifestyle modifications were very accessible. And again, just, just great to hear the the fact that people are now talking about things like exercise and cognition was again, a big area that came up during the conference. It, I mean, it feels like shame sometimes that some of these ideas about diet, exercise aren’t being pushed out by the by the neurological community as as a whole, but, but hey, Alex and the team are working, working on that. So, so we’ll see if that that changes. It changes eventually, at times I have to go a bit strange. Will these people talking about MS not living with it. So I’m not kind of used to being in, sort of in MS community quite a lot, and that a lot of things I do for Overcoming MS. You’re in groups of people with MS. And yes, although there was the compassion there and the real desire, I think, to hear from the patient’s voices, it did feel a little bit odd at times, having all these people talking about this condition without having so reliving it. So there was a slight, slight, odd one at times, I have to say, as well. And it was this thing, as Alex was saying, exhausting over three days, four days.

 

Alex Holden  1:08:32

I think the fatigue definitely for which was an issue, probably for everyone. I was just wondering if anybody is thinking that they might want to go, because I know a number of our community are really interested in the research and might decide that it’s something they wanted to go. I suppose a question for me was a lot of those researchers and scientists and neurologists are presenting, yes, they’re conscious that there will be people with MS in their audience, but I suppose not to an extent in terms of how they are presenting the information, particularly if there are negative research results or anything that’s particularly hard hitting in terms of progression, or something like that. So is there, I suppose, just people knowing that that’s a possibility. If they’re going, I just wouldn’t want people going and then kind of going, oh my god, this is sort of the confronting,

 

Phil Startin  1:09:24

But it’s interesting, actually, Alex, so I think, I think you’re right, but I wonder if that’s about the presentation. The presenters themselves, coming from a scientific background. I know we’ve been to scientific conferences where you get some, some great presenters who make, even if you understand the field very well make it very accessible, and those that don’t so some of the presentations, possibly they could have done with some presentation skills themselves.

 

Alex Holden  1:09:50

I feel we probably have more influence over being able to warn people than being able to influence the presenters, right? Phil, I think are you? You’re the next set of couple. Of questions.

 

Phil Startin  1:10:00

Do I just go through some of the set questions that came out so from that? So again, I mean, there was a question on, are there any updates on therapies, treatments for progressive MS, which I think Brett went through in a fair amount of detail. And we’ve got the new, the new offering from Sanofi that was presented at the conference that successfully completed phase three for secondary progressive MS, and does seem to attack, or look at the processes that are not related to information, or fo focal information, which is great. And I think one of the first times that’s that’s been done, but it’s, I don’t think it’s quite clear yet exactly how that works. And again, which kind of are the underlying processes that related to, let’s say, smoldering MS or Pira it actually attacks. And Brett, do you know? Do you have any idea how long it would now be until that becomes available as approved by the FDA or by NICE here in the UK?

 

Brett Drummond  1:11:00

Yeah, no, no real guidance in terms of what we’re looking at there, in terms of timelines for it. Generally, the process will be FDA approval will then lead to quick approval elsewhere around the world, but we don’t know exactly what that’s going to be. I think I saw another question on that around will it work also for Primary Progressive MS that came up, which I think is a really good question. The short answer is, we don’t know, because they were, they weren’t included in the trial. But the slightly longer answer is, I think there is definitely some hope there, because the idea would be that it’s targeting the same process that we’re seeing in the cohorts were tested. But yeah, in terms of timelines, I mean hopeful can especially the one thing I will say is that when you’re dealing with a therapy that is completely unique in the fact that we don’t have a therapy for this yet, the timelines tend to be shorter, that they tend to try and fast track it when you know this is a newer sort of medication that is meeting a completely unmet need?

 

Phil Startin  1:12:04

I completely agree. And another question that I think was put in mind my direction, was about, mentioned about biomarkers, and how could that they figure out what treatment is going to be best for us? And again, great, you talked a little bit about the biomarkers. And again, there was a fair bit at the conference about those and how the different biomarkers that they’re looking at, so the kind of imaging biomarkers that they’ll use, PET scans, or MRI scans, or all the blood and the fluid biomarkers, the Clinical Biomarkers, there’s a number of different things they can measure. And for why, I picked up that, potentially for kind of the different strains of the condition, there could be different processes that each of us are experiencing, and these different biomarkers will look at these differently, so, which almost, I think, comes back a little bit to the need, almost to must change that classification of MS away from Just relapsing remitting, straight to progressive and primary proggressive, to something else that actually better, so better describes really what’s going on with us. And it’s only, I think, when they do that that will really help them in terms of all the research as well, because that will potentially then dry up, dry the research. It will drive all the measurements or the tests that are done as individuals with MS, they’ll be very, very different. So it’s, it was all seems quite tied together. And again, Fred Lublin did it, gave a brief talk on the work that he’s doing with the with a team now looking at coming up with it, with a new definitions, the new classifications. And again, I’m not sure when that’s that’s due out, right? And Brett, if you have heard any more about that or how that’s progressing?

 

Brett Drummond  1:13:45

Yeah, I don’t know when, when we’re expecting that, but I do agree, and this has been a conversation for a while in the MS research space that we kind of want to get rid of those terms. They’re sort of there historically, and they give us a framework to work in, which I guess everyone knows. But you know, it’s also, we can already say with Pira that, you know, it’s not accurate in terms of what’s necessarily going on, and I know that a lot of people don’t necessarily use it because depending, I mean, it also has regulatory impacts, depending on where you are in the world, because there are some countries where, if your neurologist writes on your form that you’ve now gone to secondary progressive MS, you basically don’t have access to any DMTs anymore. And we know that that’s not, you know, the research has shown that people who, even by these definitions that we may or may not agree with, once you go to secondary progressive MS, a lot of these existing medications can still have really large benefits if, for example, you still have relapses. So you know, there are many reasons why we don’t necessarily want to use these, these terms anymore, in terms of choosing the best therapies. Biomarkers will probably be better in terms of working out when a therapy is not working. But there’s probably a conversation, and a long conversation, which we. Don’t have time for but around global registries and how now we’re getting a lot of clinical data across a really long period of time. And the hope with this is that we may be able to shift to a more personalized medicine approach. So you know when a person living with MS comes in and is diagnosed, you can look at that person and all of their characteristics, search these databases and go, Well, you know, we have 10,000 people who match your characteristics, and based on having followed them over a long period of time, we’ve found that the most effective therapy was this. Now that’s obviously never going to be 100% effective, but in terms of guiding these treatment decisions and trying to find one that works best, that’s probably going to be our, our best way of doing that.

 

Alex Holden  1:15:46

We actually had a really interesting conversation about personalized treatments across the team a couple of weeks ago. Because actually, I think that reflects into lifestyle as well as medication, medical treatments. Because in the same way as in any day life, some people react to certain foods. Some people find certain forms of exercise, work for them and other forms of exercise. People need different amounts of sleep. And I think that will be really interesting to see, sort of how the Overcoming MS program can adapt to that, that it becomes it’s around personalized, individualized treatments across, yes, both medication as well as lifestyle treatments. I think that’s a really interesting director.

 

Brett Drummond  1:16:24

And I think it’s the sort of thing that should start to get you know, the more data we can capture in these databases, the better. And that’s the sort of information that’s not yet really being captured. It’s focusing more on the clinical but yes, if we can start to bring in a lot of those lifestyle factors in there, that will be really helpful.

 

Alex Holden  1:16:40

And some of the registries are collecting lifestyle factors. So for people who haven’t registered with your local MS registry in your country, it is well worth doing and well worth encouraging them to be collecting those lifestyle factors. We are talking to some of them about it, and around how we can then use some of that data to sort of be able to provide evidence on the Overcoming MS program. But the more people are asking for that, and the more people are interested, I think the better. I’m going to throw a couple. I’m very conscious of time. I’m going to throw a couple of really, really quick answer questions, just because I think we can easily cross them off the list. They’re about two on two word answers. So Brett, how is Tolebrutiniv administered? Is it tablets? Infusion, injections?

 

Brett Drummond  1:17:24

Tablets.

 

Alex Holden  1:17:28

Excellent. Thank you. Do you know if the Cambridge trials include people of all ages?

 

Brett Drummond  1:17:33

There is definitely an age restriction on this trial at the moment, and there was a few questions around that it is definitely something that’s been discussed in that came under the diversity part. If you watch the patient day, it’s a question that we talk about in terms of increasing age on these things. But yes, it is fully recruited at the moment as well, so that’s not taking any new participants.

 

Alex Holden  1:17:54

Okay, Phil, could you please repeat the names of the professors at ECTRIMS talking about physical activity.

 

Phil Startin  1:18:02

Yes, it was Professor Dalgas, who is based in Copenhagen, and Professor Motl. who’s in the US.

 

Alex Holden  1:18:13

Excellent. Thank you very much. Final, I don’t know how quick this one is, but we’ll see how high was the high dose of vitamin D in the Delay MS trial. Can you remember?

 

Brett Drummond  1:18:24

Yeah, 100,000 international units over two weeks, which was a very weird way of doing it, but yes, that’s what it was.

 

Alex Holden  1:18:32

fantastic. I’ve just confused Jake in the background. Who’s going? Hang on, you’re not answering the questions in order. But I just thought, at least then we cannot. We’re not going to get through everyone’s questions. I’m really sorry, but at least we can get but at least we can get some of those quick ones out the way. One question I thought would be quite interesting, particularly given different health care systems. Some of the treatments sound amazing, but they can be expensive or hard to access. Were there any conversations about making them more available to everyone, no matter where they live? Which, of course, is, you know, it’s one thing that when they’re licensed, it’s another thing whether they’re funded by different countries and different health systems. Have you got any thoughts on that? Either of you?

 

Phil Startin  1:19:09

Yeah. I mean, just very briefly, in terms of some of the numbers are at that. I mean, I saw that presentation, and it was really quite shocking. I mean, I think it was saying that in kind of mid income countries, the kind of the availability of DMTs is only about 50%, in low income countries is zero. So there is a huge amount of inequality around the world in terms of where DMTs are available, and particularly about around the higher efficacy DMT things like Ocrevus, I think even on the micro scale, I think I mean Brett, where you are. So in Australia, apparently, there’s quite a difference between Australia and New Zealand in terms of availability of DMTs. So it’s, yeah, it’s interesting and not good, not good at all.

 

Brett Drummond  1:19:57

Yeah, it’s definitely a thing that. So the next part. Podcast that’s coming out next ECTRIMS podcast is around diversity and inclusion, and one of the things that we discuss on there is around access to DMTs, and one of the guests on there says that this basically isn’t a healthcare issue anymore. This is a social justice issue when how we know, we know that the impacts these therapies can have, the fact that some people living with MS just can’t access them, just isn’t okay, essentially, and we have a moral obligation to change this. So yes, it is definitely a problem, and definitely something that people are thinking about how we can address it.

 

Alex Holden  1:20:39

Yeah, really, really important. Okay, just I think we’ll just have two more questions. Then, for people who are wanting to join MS research studies and trials, clinical trials, what is the best way, surely, to speak to their MS nurse and their neurologist around what they would be eligible for? Do you have any device,

 

Brett Drummond  1:21:03

Stay engaged, is my first thing. So definitely participating in things like this, following different different pages that talk about it, so that you can see when new things are coming on. And one thing that I will give a plug for that should be up soon, and especially if a lot of the audience is based in the UK, there is something that’s going to be coming out of the Cambridge group that I talked about before, who are working on a system where, basically you can put your details in and you will be notified anytime a clinical trial, automatically notified anytime a clinical trial comes up that you are eligible for. So this is based on the fact that we know that people living with MS do really want to participate, but often they don’t, can’t find the information. So this is, you know, a very easy one step registration, and then you don’t need to do anything, and you’ll find it. So yeah, we will be talking about that. We’ve got a whole plan to start talking about that soon. So again, if you follow that Facebook page, that’s where you’ll find out about that, but it’s going to be a really easy way to get involved in lots and lots of different clinical trials.

 

Phil Startin  1:22:08

Yeah, and it’s not sometimes the easiest thing to do, because I tried for a while to go into the Octopus trial, and I went through various websites and things like the MS register and even clinicaltrials.gov and really couldn’t get get on it, but it’s actually only after speaking to my neurologist and I got it with it within a couple of weeks after that. So I think that’s, that’s good advice as well. Yeah, get a neurologist who likes doing the science stuff and possibly is involved in trials, and yes, badger them to get you on.

 

Alex Holden  1:22:36

Badgering is always very important. I said, with any treatment decision anyway, just Okay, I think we’re going to have to end there. There was a question about research findings in employment, which I’m not going to answer, but I’m going to leave you with a little sense of anticipation, because Overcoming MS is has signed up to be part of a research project around maintaining independence through employment, and we will be making some announcements next year. So the person who aren’t asked that question, I’m afraid I’m leaving you hanging for a couple of months based on time. Final question for you both, just to end on what advances or discoveries in Are you in the field of MS treatment and research are you most optimistic about quick fire answer.

 

Phil Startin  1:23:31

Just really quickly I was so encouraged by the amount of research and the attention that is on Pira research around Pira is going on at the moment, and those different processes that align, that underlie that that’s part of the condition. So I I’m expecting that some of that to happen, but, I also think, as I said, after I did my brief talk, there’s so much we can do as individuals as well to adjust this condition, and just how this, this condition progresses, and really just change our kind of flight path with the condition. So it’s, I think the more research we can get around that and promote that more, the better it’ll be.

 

Brett Drummond  1:24:15

One, remyelination, I’m optimistic that we’re going to get somewhere with that, and I think that’s going to be a massive step forward in terms of helping people living with MS, potentially being able to actually reverse what’s happening in the disease. I think will be really exciting. And everyone that we talk to, as I said, it’s going to be a matter of when, not if. So that’s one. I think the thing that makes me most optimistic and most positive about MS research is that it’s not being siloed anymore, and it’s not just researchers talking to researchers. The fact that we now have really tangible ways that we’re including people living with MS in this, both at the conference, but in research programs around the world, I think, is hugely important. None can only accelerate the progress that we make. So I think that’s the thing that probably makes me the most optimistic about where we’re going.

 

Alex Holden  1:25:07

 Brilliant. Thank you. I think, yes, I was going to say remyelination, and I think Brett that actually, I think we both said remyelination at the end of last year’s webinar as well. And the fact that you’re saying there could be some very positive news in 2025 I think that makes that really exciting. That’s been something that’s been a lot of focus on and and we should be able to see some progress. And I was really pleased you touched on personalized medicine, because that’s something I think is very exciting, particularly within MS because of the individualized nature of MS as a condition, the fact that then treatment can be individualized around and it person’s needs, to me that just it seems to mesh very beautifully together, to actually give people the right support that works for them at that particular time. Okay, well, so a big thank you both to Brett and Phil for today’s webinar. Hopefully, everybody you have enjoyed the session. You will receive a recording via Zoom next week, and some of you this might be the first time you’ve seen the session from having received the recording. And also this will be on the Overcoming MS website and our YouTube channel. So please do share it with other people if you think they would find it interestingly. Thank you to Jake, who’s been supporting us in the background. With all the questions. And I do feel bad there has been so many more questions received than we could have possibly answered. We will, I know Jake and I will have a chat about this, and we will then look at how we can answer some of those questions in website information and social media posts. So we do actually still take them all in and try and make sure that they come through in some of our content in other ways. So the questions are not wasted, because it still helps us understand what you’re interested in. This is our last webinar of the year. So thank you to those of you who’ve joined us all throughout 2024 we’ll be back on the eighth of January, at 7pm UK time for our first episode of season six, where we’ll be hearing from our Overcoming MS facilitator, Laura Crowder. She’s going to be doing an expert insights webinar on the Change Your Life for life pillar, I’ve heard Laura talk about this. It’s something she’s so passionate about. It’s really interesting just listening to that passion coming through. So I would really encourage you to register for the webinar on the Overcoming MS website events page. Finally, just as a reminder, as you leave the webinar, please do try fill out this short survey, because it’s really helpful to us to get your feedback. So please, do take the time to do that finally. Thank you. Thank you again. Brett, thank you, Phil, thank you everybody for joining us. Do take care over the holiday season and we will see you again soon. Take care, everyone. Alex, thanks. Bye, thanks everyone. Bye.