S8E30: Webinar highlights ECTRIMS highlights 2025 with Brett Drummond and Karen Campbell

Overcoming MS (00:39)

Today’s episode features audio from the Ektrums 2025 Insight into the Latest MS Research Webinar, part of the Living Well with MS Webinar series. Overcoming MS CEO Alex Holden welcomes Karen Campbell, an Overcoming MS Community member, nurse, and MS researcher, and Brett Drummond from MS Translate to discuss highlights from Ektrums 2025.

 

The Joint ACTRIMS and ECTRIMS Conference 2026 will be held in Toronto, October 21st through the 23rd. Learn more at mstoronto26.org.

 

Alex Holden (01:23)

I am Alex Holden, I’m the Chief Executive of Overcoming MS Today I am delighted to welcome back Brett Drummond from MS Translate to discuss the latest MS research and highlights from this year’s ECTRIMS conference. So the European Committee for Treatment and Research in MS will also be welcome.

 

Karen Campbell who is a registered nurse, MS researcher and living with MS herself who also attended ECTRIMS this year so it will be fantastic to see you both again on screen. Karen will be sharing her insights and discussing what Brett is telling us from the research and giving us bit of insight what that means for the MS community.

 

Then with a little bit around ECTRIMS and Brett and Karen will be joining us in a moment.

 

Many of you have joined our previous webinars with Brett, but for those of you who are new joining today, just to give you a bit of background, the 2025 ECGEMS was the 41st Congress of the European Committee for Treatment and Research in Multiple Sclerosis. It took place in Barcelona in September. there were more than 9,500 delegates from all around the world came together. There was a huge range of speakers, scientific sessions, educational sessions, networking and then brilliantly patient information day for people with MS to join at the end was the biggest ever patient information day which we will come on to. So ECTRIMS is a big deal, it’s sort of all the key thinkers, all the influencers, the movers and shakers, the neurologists, MS nurses, researchers like Karen, everybody comes together to share ideas, share best practices and sort of hear about the latest research studies.

I would like to welcome Brett to our virtual stage to share his thoughts from the conference. Brett, over to you.

 

Brett Drummond (03:12)

Really the focus of this presentation is giving some highlights from the ECTRIMS 2025 conference. But so my background is in MS research and science communication and that’s why I’m here talking to you today about all of this.

 

So my job today really is to try and take some of the key highlights. At ECTRIMS I get a lot of access in terms of what’s going on. So at ECTRIMS I host the official conference podcast, which is aimed more at the research community, but it means I get to have a lot of fantastic conversations with leaders in the field, but probably more excitingly even for me with my passion in terms of communicating to people living with MS about these topics. Since 2024, I’ve run and hosted the patient community day event as well.

 

I think the biggest research highlight of ECTRIMS 2025 was the release of the Phase 2 clinical trial information on CCMR2. So CCMR2 is a clinical trial that was run out of the University of Cambridge through the Cambridge Centre for Myelin Repair and the Cambridge Clinical MS Research Group. And this was a Phase 2 trial that many of you may have heard about looking at two repurposed medications, so metformin, is a diabetes drug, and clemastine, which used to be used as an antihistamine. In people living with relapsing remitting MS, to see whether or not these compounds could repair myelin damage. So they’d both shown potential in preclinical and early studies to be able to do that. And so this was the first larger, largest trial of people living with MS to test these. One of the things that I just want to show, is just how they went about measuring to see whether or not there was myelin repair in these people, because it’s quite an interesting technique is that they’re looking at measuring the time taken for a signal to go from the eyeball to the back of the head. So how long does it take for this signal to travel along the optic nerve?

 

One of the interesting things about the trial was that it actually took them a lot longer to recruit for this than they thought it would. And part of the reason for that is just the effectiveness of new therapies, As many people with damage to their optic nerve as they thought so it took quite a while for them to find those people essentially What you’re looking for is that there will be people that will have compared to controls there will be Slowing of that signal if there’s demyelination so when you’re on the treatments, what they’re looking to see is at the end of the trial does that signal travel more quickly than it did at the start.

And so what was exciting about this trial is that they did see a significant effect of metformin and clemastine in terms of improving myelin repair in the people living with MS on the trial.

Scientifically, it’s very exciting. This is now the third successful trial that we’ve had in MS showing that remyelination is possible, which is huge. But obviously for people living with MS, what you are mostly interested in is when is this gonna be something that’s available? So how close is this to actually being something that we may be able to access?

So in terms of the results themselves, even though it was positive, it was a very small effect. 1.3 milliseconds was the change in time that it took to travel.

In terms of did the people on the trial notice anything clinically while that was on there, there was no clinically meaningful difference. So it didn’t necessarily feel any different in terms of all of the measures that were used during the trial.

Now, what does that mean? Well, it means that yes, these compounds have the potential to repair myelin damage in people living with MS, but the clinically meaningful outcomes are possibly mostly to do with the fact that the trial only went across six months. Most of the people who work in this field will tell you that they think that to see a clinically meaningful benefit, we’re talking about a year or two years of being on these treatments before you start to see an actual impact on symptoms for people living with MS. So these results don’t necessarily mean that it won’t happen. It’s just that the trial design needs to be extended out for that. One of the things that I think is really important that I mentioned in this and done a number of talks around this and I’ve talked about this trial a lot in the lead up to the results being announced at ECTRIMS is around how should we be thinking about these medications? Metformin and clemastine to a lesser extent are relatively easily accessible. But what the research is involved in the trial and the general consensus would be around this is that these are not medications that would be recommended for people living with MS to start taking for a couple of reasons. One, as we’ve already said,

 

There’s no clinically meaningful outcome at the moment. You’re not necessarily gonna feel different on the medications and we don’t know the long-term effects. But even in the short term, there were certainly some safety issues that needed to be dealt with. Now, none that forced people off the trial, but still things that are gonna impact on quality of life.

So in terms of metformin, it definitely comes with a lot of gastrointestinal symptoms potentially. So a number of people on trial on metformin experience diarrhea and other GI symptoms. Clemastine has a huge sedative effect. So this is one of the big reasons why it’s not really widely used as an antihistamine anymore. So in a group of people who are already dealing with quite intense fatigue. Obviously the sedative effect of clemastine is not something necessarily that we want to add on to that. What are the next steps? I think around this now when was mentioned at ECTRIMS 2025, there’s a few different things that are going to be looked at. The big question now is, do we already have the therapies that are going to be our remyelination therapies? And we just need to think about extending trials, following them out for longer to see these big benefits that we might see, or are there going to be more powerful remyelination therapies that come through that are gonna be better and we’re gonna start to see them in the existing trials? The answer is probably both. So I think there will be some follow-up on this trial to start to monitor out further to see, is there ongoing benefits or do we see a greater change over a longer period of time? But there are lots of other compounds that are also being investigated.

The exciting thing around this, I think there’s two exciting things around this.

One is that we know it’s possible, but we also know how to do trials around this. And this is not a small thing. It’s not that long ago that conversations at ECTRIMS were around, we really think myelin repair is possible, but how do we design a trial that’s going to capture whether or not it’s happening? We now have three trials that have shown it’s possible, but also to show that we know how to capture and measure this in.

In a clinical trial, which is a big step forward, because it means with any new compounds that might be coming through, we know that we’re being able to test them effectively. So we’re not going to miss anything. I think the second exciting thing around this, going back to sort of how I framed this at the start in terms of what does this mean for you, is that when we talk to people in the field around myelin repair, the two questions are, is it possible?

And when are we gonna see it available for people living with MS? In terms of the first question, this is not an if anymore. People are very convinced that we will have myelin repair therapies for people living with MS. There’s almost zero doubt when you talk to people, they say, yes, this is going to happen. It’s just a matter of when. And in terms of the when, people are pretty confident that sort of within the next five years, we should start to see a myelin repair therapy. Now I know five years isn’t necessarily the shortest amount of time, that’s still a lengthy period of time, that’s quite good in terms of these sorts of things. So, I think that’s a really positive thing for me around this, because I think Myelin repair is one of the next big steps forward in terms of the treatment and management of MS.

So moving forward with that and a few other new treatment approaches So one is the BTKIs. This year we have the Fenobrutenib trial results.

So these are just a different type of therapy, a different class of therapy where there’s been interest in looking at this in MS. that they’ve shown now across two trials, both the TOLIBRUTENIB trial and the FENOBRUTENIB trial have shown a positive outcome in people living with progressive MS. Fenobrutin have also showed one in relapsing remitting MS.

When a person’s diagnosed with relapsing remitting MS, the disease is being driven by inflammation and you have these periods of attacks called relapses and then, disability worsens and then they go into periods of remission and then this process goes on and on and on. And then eventually a person might transition into secondary progressive MS. And the big difference being at secondary progressive MS, we just see a continual worsening of disease and this is driven by neurodegeneration rather than inflammation. Primary progressive MS starts essentially that from disease onset it’s this worsening. So this is how we would think about it traditionally is this inflammation component that we saw at the start. So we still see that this is the highest earlier on, but it continues on throughout the disease. Importantly, this neurodegeneration, We now know this is going on from the earliest phases of the disease. And then you see the disability worsening over time. What’s important about these medications and the earliest trial results from this, which was the tolobutinib, it’s now also been shown in fenobutinib, is that they saw a positive result in people with secondary progressive MS or progressive MS that didn’t have relapses. So essentially very low inflammation. And what this is telling us and we still need to unpack these results is that it seems like these treatments do actually manage to target some of this neurodegenerative component. And this is huge because none of the others really do that. All of the other existing therapies that we have are more around the minimizing the inflammatory component of MS. So hopefully now we’re having some treatments that may be able to target neurodegeneration, which is big for people with progressive MS, but also gonna have benefits for people with relapsing or remitting MS as well. So these are exciting treatments that have come out. The FENABRUTENIB trial results were really just off the back of ECTRIMS.

CAR T cells, I just want to mention they’re very, very early in terms of how they’re being used in MS, but I know there’s a lot of interest in it. People have heard about CAR T cell therapies. CAR T cell therapy has been used in cancer, which is where it’s come from, similarly to HSCT, which you may have heard of as well in terms of a treatment for MS, also started as a cancer therapy.

And the process isn’t too dissimilar, except now we’re taking T cells, which are cells that are in your immune system. T cells we know can be cells that do damage in MS. But in this instance, they’re being taken out and they’re being engineered in a laboratory to target something else in your body. And in terms of MS, mostly what these are being used for are to target B cells. So not dissimilar to things like ocreluzumab or rituximab, which are B-cell depletion therapies. This is just another way of trying to get rid of those B-cells, which we know cause problems in MS. The exciting thing or probably the advantage of CAR T-cells is we know that they can access the central nervous system better. So in terms of being able to get rid of B-cells in the brain and spinal cord, they have a greater access to that. So the idea around this is that they may be better at getting rid of the troublesome cells in the areas where they’re causing trouble. This is very, very early. So we’ve just seen one of the first patients in a clinical trial in the UK go onto a CAR T cell therapy. There are definitely some safety things associated with this treatment. So we need to work through. This is definitely something where we’re going to need to go through clinical trials, understand how this works in people living with MS, but just as another new potential treatment option that’s on the horizon. This is also something that’s being investigated.

So shifting out of the treatment space a little bit, but to talk about viruses,

In pretty much every condition, it’s impossible to get MS unless you’ve been exposed to EBV. So it seems like a necessary part of the pathway to developing MS that you need to have been exposed to this virus. Being exposed to the virus alone, however, is not enough to develop MS. 90 % of the general population get exposed to EBV at some point during your life. EBV stands for Epstein-Barr virus, and it’s the virus that causes glandular fever in people or infectious mononucleosis depending on your part of the world. But many people get exposed to EBV without ever feeling sick or having any symptoms.

We’re learning more and there’s presentation in ECTRIMS around how much this be involved. And so there’s some interesting research showing that little bits of the virus seem very similar to little bits of the myelin that gets attacked in MS. And so there’s a growing theory here that essentially this may be a case of mistaken identity.

Your immune system reacts to the fact that you’ve got this virus that’s infected you, it starts to attack the virus. And as it’s doing that, it starts to attack something that it thinks is the virus, but it turns out it’s actually part of the myelin sheath. And then that’s what then triggers once that starts to happen, that triggers off a series of events that then lead to MS. That research is all still preliminary, but we’re getting some interesting results around.

 

What that might be and what those targets might be. Can we target EBV or other viruses as a way of treating MS? there’s been some interesting results around this in a very small number of people.

There’s isolated case studies from around the world of people living with MS who also have HIV. And what they’ve seen in those individuals, in some of those individuals, is that when they are put on antivirals to treat HIV, antiretrovirals there seems to be an improvement in their MS.

 Now importantly around this, we cannot draw any conclusions from this. This is a very, this is less than 10 people that we’re talking about. So we can’t say that this is actually a causation and not just a correlation that would have gotten better anyway. But there is interest in this around, well, could antiviral therapy be potentially a treatment for MS? And so there are now some research projects definitely around the world that are looking at that.

This is something I would expect we might start to see some things around at the conference next year. But there’s certainly some interest in some initial talks around this that happened at ECTRIMS this year. Something that continues to be of interest is just around vaccinations. Consensus guidelines, all of this, and it’s talked about at the conference again, is that vaccinations are safe for people living with MS.

Obviously in an individual circumstance, if you have any concerns, always talk to your healthcare professional, but high level of safety and people should be getting vaccinated against COVID, against the flu, to help protect against those sicknesses as we know that those sicknesses can also worsen MS symptoms.

 Rehabilitation and lifestyle modifications was a big topic at the conference.

I think the biggest change in messaging at the conference this year, is that these aren’t late stage issues.

The idea now is that all of these rehabilitation strategies and lifestyle modifications are things that should be talked about from the very beginning of the disease and implemented from the very beginning of disease. think the phrase last year, prehabilitation is better than rehabilitation.

Basically, we don’t want to wait until function is lost to try and restore it. It’s much easier to try and keep something than to get it back after it’s gone. And the other thing I really want to talk about is mental health. It’s something that I think we need to talk more about in terms of MS. We know people living with MS have higher rates of depression, have higher rates of anxiety, have higher rates of suicide, it’s something we need to do more about.

 

For people living with MS, you need a team of healthcare professionals around to provide that support. So obviously there’s the neurologist who have those interactions with and they’re helping to manage the disease, but then it’s, having access to an MS nurse, That has huge benefits. Implementing other allied health professionals, so physiotherapy, exercise physiologists, but also ensuring that clinical neuropsychologists and psychologists are involved in this process as well to help with mental health and also with cognition, which is a big thing. the important message here for people living with MS is knowing that these are topics that are being discussed at these big conferences. Definitely over the past few years, there’s been a shift going to these conferences in terms of, we obviously talk a lot about basic science, we talk a lot about exciting things from the research perspective, but it’s also around what are the other things that we can be doing that can help people on a daily basis living with MS and mental health and shining a spotlight on that research highlight that I wanted to go through is just around biomarkers. So biomarkers for a really quick sort of definition and basically anything that we can measure that indicates change over time.

In terms of MS, one of the things that we’re really interested in doing is trying to identify is there something that can tell us whether or not the disease is progressing, that can maybe predict whether or not there’s gonna be a relapse that’s coming, seeing whether other things are changing under the surface. This can also apply to different symptoms. So looking at other biomarkers, other things that we can measure that can indicate cognitive changes over time that we can pick up early, sensitive things that we can see that are also non-invasive. Obviously traditionally our main way of being able to do this has been through looking at MRI images over time and seeing, is there a change on the new lesions? I think most people living with MS would say they’d prefer it if there could be a simple blood test or something that could give some indication, especially if this could give an indication early so that decisions could be made and maybe we try and stop things before they progress. So there’s a couple of ones that you may have heard about. neurofilament light chain or NFL and GFAP Glial for brilliary acidic protein are both ones that are being investigated in terms of things in the blood. So NFL is the one that’s had the most research done on it. Essentially it gets released into the bloodstream when there’s damage to the nervous system. And so what you see is when there is an attack or relapse, you see NFL go up in the blood. And so there’s interest in, you know, being able to do this to see, we work out what’s going on?

GFAP looks interesting in terms of being potentially a biomarker of more of the progressive disease. So more of the neurodegeneration that we’re seeing. These are both still relatively research-based. They’re not being used clinically at the moment. There are some people who believe more strongly in NFL and might start to use that a little bit in terms of the clinic, you know, for treatment monitoring. So if person goes on to a treatment measuring NFL over time to see, you know, is that treatment working? Are we seeing NFL come down because there is no disease activity? And then over time, you know, just making sure it doesn’t go back up. And if it starts to go back up thinking, all right, do we need to make a switch here in terms of the treatment that the person’s on? Imaging and digital technologies are another big one in the space. So, you know, are there actually wearable devices, this was another big topic at the conference, other wearable devices or phone apps that people can be using to, you know, input large amounts of data on a daily basis, either directly or indirectly just through their activities that may also be able to provide us information that could be used as a biomarker. So it was a very simple example of that. If there were things that were monitoring step counts and activity, you know, can that be used? Or would that be a good marker of starting to see if there is a relapse coming or if there’s disease worsening, do you see a reproducible effect in terms of a person starts to walk less because things are getting worse? That’s a very simple example. They’re looking at this in terms of many different things, especially in terms of cognition. But I think importantly, just to highlight that there is a lot going on in this space as well and progress is being made. Because what we know is the earlier we can realise that things are starting to change, the better it is.

But also I think the other thing that I want to highlight in this is it’s also a little bit around healthcare professionals understanding that this is something where they need to get better or have better tools at their disposal. Cause I think it would not be an uncommon thing for people living with MS to think that there is, that they’re feeling worse. They think that there’s progression going on. They go to their appointment. Nothing has changed on an MRI, nothing seems to be happening, but you can feel it. You know that there’s change. And so we need more sensitive markers to be able to pick up on that, because generally you’re gonna understand it better, and it just takes time for other tools to come up. So are there better ways that we can be monitoring this that better align with when you start to feel it, we can also see it and changes can be made.

The other big thing around ECTRIMS 2025 was a focus on how do we have people living with MS more engaged in research.

I think there is a really clear understanding now across the research community that things work better, things work more quickly if we involve the people who are impacted by the most of it at every stages of research. So in terms of designing research projects, coming up with research questions, obviously being participants in studies, One of our big ways that we’re trying to maximise this engagement coming out of the conference is an initiative that started four years ago that, as I said at the start, I got heavily involved in two years ago. But at the end of each conference, on the last day of the conference, there’s a three hour event where we talk through the highlights that have just happened at the conference. We have a panel of experts from around the world, some really exciting people in terms of real leaders in all of these topics.

Full replays are available from Barcelona. We’re already in terms of planning for MS Toronto 2026, where we’ll be hosting this event again. The other thing that I wanted to mention in terms of engagement with research,

One of the other exciting things that happened at ECTRIMS 2025 was the launch of TRUSTED. scientists love acronyms and they love coming up with these things. So TRUSTED is the trials and registries unified signup tool for equitable discoveries. Now this is being run out of the University of Cambridge as well. You can look up that website, trusted.org.uk.

Essentially, this is just a way of getting people in the UK for now, it’s solely the UK for now, more involved in research and being able to give you more insights into the research projects that are happening in the UK for MS and giving you a way that you can be easily contacted if there are studies available that you are eligible to participate in. So basically you sign up on a form, some people will have already done it, this used to be called consent or a lot of Clinical sites throughout the UK are already involved, but you can sign up even if you’re the place where you are being treated clinically isn’t one of the sites, you can still sign up. One form, you sign up, you go through and then you can be contacted to participate in studies.

The MS nursing session really went through a couple of big things, health literacy, which is a massive thing for me in terms of science communication. How do we actually ensure that people living with MS are accessing the right information and credible information? And this is something that needs to be discussed with everyone and MS nurses play a key role in terms of this. We obviously want people to be finding out about research and looking up things that may be beneficial, but how do you separate the good stuff from the bad stuff is important. but also in shared decision-making. people are coming to these conferences to learn and learning that there’s still more that we can do. there was a study that was done that looked at basically asking people living with MS and MS nurses, what are your top 10 priorities?

Not a single one of those 10 answers overlapped. So there was complete, and the MS nurse said, for me, that was a real eye-opener in terms of I might have things that I wanna talk about in those appointments but I need to do a better job of listening and we need to do a better job of coming together and making sure we’re in alignment on the things that are important because in the end they’re to help the person living with MS. So being able to have those conversations and, have a better understanding of how we listen better and understand more around both sides of those situations is something that we’re starting to learn more about.

 

Alex Holden (28:22)

Brett, that was excellent. I really, really appreciate you.

 

Overcoming MS (28:26)

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Alex Holden (28:50)

Karen, welcome to the screen and lovely to see you again. And welcome. Do you want to just sort of introduce yourself to the community and then I think share a little bit about what it’s like to be in that patient role sort of at the conference, but as a person with MS.

The majority of the conference is not targeted at people with MS, it’s targeted at the researchers.

 

Karen

Yeah, for sure. So my name is Karen. I am an assistant professor at York University in the School of Nursing in Toronto, Ontario in Canada. And I came to ECTRIMS because I am also a researcher and a researcher doing work in MS. I actually work with women that have experienced intimate partner violence and looking at what that does to women that also are living with MS. So that was my interest in attending ECTRIMS And then obviously, I have the other side of that of also being a person that lives with MS.

So on top of all of the actual sessions, there were also research posters and there were hundreds of those, too many to even go through. I think it’s also interesting to listen to researchers and to physicians

 

talking about patients, like patients this and patients that. I think sometimes they forget a little bit and similar to what the MS nurses found that people are involved in here. And so just thinking about shifting that language I think was important to me, even talking about people with MS rather than patients because we exist outside of our lives as patients.

I think that the other thing that was important to me, was to look at or to attend some of the sessions that were specifically around lifestyle modifications. I certainly was interested in some of the new therapies and drugs. I have a PhD, I’m in healthcare and still that went over my head in terms of the actual genetics of what’s happening. So it was really helpful to attend some of those sessions.

 

Alex Holden

Excellent, thanks Karen. Yeah, think there’s something about, I think the point you’re making about being people with MS for a lot of those presentations are data points, particularly when talking about a big clinical trial when you’ve got several thousand people who have been participating. There’s a quite high profile academics and researchers who are attending that patient community day and are having to present their research and make some interpretations for a audience, which is purely people with MS What are your thoughts in terms of where that goes?

 

Brett Drummond (31:31)

for me, it’s been a massive inclusion into the program in terms of what I do at MS Translate and what I’m, what I’m passionate about. completely agree with the language thing. And this is something I think this is a listening part of it as well. And something that I learned very early during MS Translate of shifting the language that I use around this. You know, see people, articles in the media talking about someone suffering, they’re an MS sufferer and hearing, you know, when we just hear so much feedback around this is not language we wanna hear around what’s going on. yes, our biggest issue with patient community day is people living with MS community day is a bit of a mouthful and also it’s not just an MS event now. We also have NMOSD and MOGAD that come under the umbrella that we talk to, But yeah, I think that the fact that we have, mean, the people who come up on stage for the panel during that event are really the leaders in the fields on the topics that we talk about.

 

I think what’s a really nice behind the scenes part of this that I can share is they are all super excited about being involved. This is a very genuine thing in terms of we understand that this is something we need to be doing and we’re excited to do. Because it’s also important for them. That’s the other, that is very much the other part of this that we can’t overlook. This is not a one-way conversation where this event is about, hey, we’re gonna tell you about what happened at ECTRIMS. That’s obviously part of it. But it’s that two-way conversation going back where the MS research community can learn a lot from people living with MS. And it starts to those conversations guide what the next 12 months, 24 months of research looks like.

 

Alex Holden (33:08)

That afternoon was probably the most exciting part of the entire conference, that it was palpable how excited people were to be there on whether they were people living with MS, people that were supporting people with MS, wherever they came to it from. I think that it was probably the most exciting part for me. And it was the part that put a lot of really complex things into plain language like MS translate, right? With that idea of how do we take some of these big complicated things that are happening and what does this mean for people?

I agree that the energy that it felt in the room and obviously it took place in Barcelona and the Spanish charities I think had clearly done a very good job. There was a huge representation of Spanish speaking people with MS.

And I really see Overcoming MS’s role in how we get some of that really clear information out to people, particularly obviously in our role around health and wellbeing and lifestyle around, okay, this is what the study said. This is what this means for the community. That’s what I see our role as being. I mean, on that topic.

Do you around EBV, which you touched on. So do you know if you test negative for EBV, does that mean you don’t currently have it or that you have never had it?

 

 

Brett Drummond (34:22)

Good question. Generally, you would pick up whether anyone’s ever been exposed to it in these tests. So very unlikely, but you don’t necessarily catch it at the time. It’s more of a historical thing. I mean, most people are getting exposed to this in, in adolescence. It’s colloquially called the kissing disease is that’s how it’s passed on all of these teenagers sharing their saliva and passing on these viruses. So it should be historical.

It is certainly possible that a person will test negative. Again, that doesn’t necessarily mean though that they haven’t been exposed. There was a couple in the studies who were also negative, but yeah, generally our thinking on this at the moment is that every person with MS have been exposed at some point in their life.

 

Alex Holden (35:02)

I think about it COVID, the PCR tests. The PCR tests will tell you if you have it right now. And the same thing with EBV. But it’s likely, there’s like 90 to 95 % of us have already had it. So unless you’re getting tested for all the antibodies, it’s not really going to tell you. A test isn’t going to tell you too much. You can just assume you probably have been exposed.

It’s more the potential then of then looking at vaccinations and things in the future rather than what it tells you to know whether you’ve been exposed, isn’t it? So someone has said T-cell therapy looks very interesting. Could the mRNA approach be adapted to deliver T-cell therapy in the same way?

 

Brett Drummond (35:41)

So there’s slightly different, things. in terms of the mRNA therapy related things, we have our mRNA vaccines. I don’t think we’d use mRNA to try and code for engineered T cells necessarily. But there is some mRNA stuff I guess linking to the previous question, Moderna are looking at an mRNA vaccine for EBV and looking to see whether this could be a novel treatment for MS that has just launched in a few sites across the UK. in terms of mRNA vaccines, that’s what’s being looked at in terms of MS, but I don’t know about mRNA for T cell sorts of things.

 

Alex Holden (36:19)

Thank you. And then was there any discussion of GLP-1s for using MS around inflammation?

 

Brett Drummond (36:27)

So, I mean, Forman is probably the main one that we talked about as being part of the CCMR2 trial. There have been discussions of other ones potentially around that, but I would say there’s not a huge amount of data.

 

Alex Holden (36:39)

I think there’s lots of language like this where I was like quickly like trying to go back into my science and then learn things I’ve never learned before.

 

Karen

GLP is referred to weight loss drugs those drugs that help you to lose weight. some of these trials are still going on in mice. And so, we’re still steps and steps away before this is actually something that you will see getting prescribed to us. And I just think that that’s important, but also to recognize that there has been a huge shift. And I think that this was really something that stood out to me at ECTRIMS was around kind of the golden age, of drugs that we’re using in terms of Kesimpta and Ocrevus. But those drugs being used and how far we’ve come in a short period of time, because when I was diagnosed 10 years ago, those weren’t options and they were in trials. And so we may see these things, who knows?

Even though the GLP ones, maybe don’t have good information around this, the lifestyle factors and that dealing with obesity was one of the clear things that came out. Whether it came out in the exercise sessions, it came out in the diet sessions around dealing with obesity and lowering obesity rates is going to be helpful for MS and MS symptoms.

The other thing around diet that as a person that follows the OMS way of being for 10 years, that it was really clear that although there’s lots of different diets that the ones that are showing the most significance are those that are that are following Mediterranean type. And specifically what they talked about was no red meat, no sweets, which kind of hurt me a little bit, lots of fruits and vegetables, less processed foods and the fish. So thinking about Mediterranean and again exercise came up. So while we don’t yet know about the GLP-1s, I think it’s worthwhile to continue to think about what OMS offers in terms of the support and whatnot for living a healthy lifestyle.

 

Alex Holden

Thanks, Karen. We often sort of just talk in big senses around, yes, it’s beneficial for people with MS. But actually that differentiation between progression or reducing progression and the impact on the symptoms can sometimes be two completely different things. And we maybe need to be clearer.

Does myelin repair lead to reduced symptoms or reduced progression, or is that not yet known?

 

Brett Drummond (39:01)

I’d say we probably don’t know it. Theoretically, we would assume if we have an effective myelin repair therapy, across a long period of time that we would expect there to be some symptom improvement because a lot of the symptoms that we’re seeing are because of the damage to the myelin that’s occurring. So if we’re repairing that and making it, a lot healthier than we would expect to see it, but that’s theoretical at the moment. We haven’t really observed that any real effect on symptoms across the clinical trials, probably just because they haven’t gone long enough other than obviously you have this slight quickening of signal across the nerves.

 

Alex Holden (39:36)

Any new information about slowing disability progression.

 

Brett Drummond (39:40)

Well, so yeah, I guess in terms of these new therapies that are coming out, the BTKIs, I mean, they’re ones that we’re looking at that may be able to do that. I mean, that’s obviously the goal of all of our therapies that are coming out is can we actually have an impact on that? I think it’s probably more what we’re looking at. Traditionally, relapse rate has been a thing that people have looked at a lot and gone, is that what’s going on? But maybe that’s not our focus anymore. It’s not necessarily because we know that even with that disease can continue to progress there’s other things going on leading to disease progression beyond relapses. And so trying to target those components to stop it is probably one of our biggest avenues. then, I mean, I don’t think we can have these conversations without always coming back to there are things other than pharmacological things that we can be doing to reduce disease progression.

 

Things like smoking. I mean, we know that smoking is a massive thing in terms of disease progression. We know it heightens susceptibility to developing MS in the first place, but we know that it has a huge impact on worsening disease progression. So, know, quitting smoking at any time, the data are shown us can reduce disease progression.

 

Alex Holden (40:47)

Yeah, I know our medical advisor, Dr. Johnny White, always says, there’s the Overcoming MS programme, these are the pillars, but actually the one thing that has been proven to have more impact than anything else is stop smoking. I think we should make that a lot clearer.

Clinicians are moving away from the categories of relaxing remitting primary progressive. But there are a couple of questions that relate to that if I can. One of them was any updates on treating primary progressive MS and the other was, was there any discussion about drugs for secondary progressive MS?

 

Brett Drummond (41:17)

I think there’s some interesting things here around going back to our discussion on language. And I think more and more, we a little bit want to shift away from relapsing, remitting secondary progressive, primary progressive, because they can potentially cause us more problems than they do good.

Scientists love being able to categorize. And so there is a nice easy thing, especially when we look at clinical trials and how we do this of saying a person is relapsing or remitting, but we know it has impacts on treatment access.

Certainly because things are listed as this is only a treatment for relapsing remitting MS. Now we know that even if a person has transitioned to secondary progressive, if there’s still inflammation, those treatments can still be possible.

 

Alex Holden (41:57)

Brett. I can’t stress how much of an eye-opener this was to me. And I know somebody asked about mental health as well, and you touched on that.

 

 

Karen

The idea of kind of not thinking about am I RMS, am I like, because I know I live with that anxiety, am I moving into, is there progression happening? this my MRIs have all been stable? I have never had a relapse and yet.

Is there something that’s changing here? Is this just aging? Is this what’s going on here? And so I think the idea of kind of like walking away from those categorizations, was such an eye-opener to hear neurologists talking about that and looking at different typologies and thinking about is this one disease broadly instead of kind of organizing us into these categories. I think it was so important. And the other thing that I took away, which I think is what you’re about to say, is around this idea of Kesimpta and Ocrevus these drugs have a broader reach so that they might have the best outcomes in terms of progression, because so much of the conference was talking about progression independent of relapse activity or Pira.

And we talked about smoldering, how do we think about kind of this progression that’s just happening in the background, these weird things that are happening to me on a day-to-day basis, where when I look over five years, I might see a difference, but I’ve never really had any relapses. So thinking about that, I think listening to that part was really helpful for decreasing anxiety for me. And I know everybody’s different. But for me, not needing to worry about that, like, am I going to go into this place really was so meaningful. having this almost moving away from the classifications is a sign of how much more we know than when those classifications first came out. And it was easy to just sort of put people, you’re in this bucket, you’re in that bucket. Whereas actually, if it’s, there’s all these different things going on that actually people are more likely to be treated as individuals and looking at what is actually happening for you as a person, rather than going, well, this is the journey that you’re on, whether you like it or not. I think it’s got to be a more positive way of looking at things.

 

Brett Drummond (44:15)

There is a huge push to shift towards a more personalized medicine approach in MS. And that’s not just from a language mindset. I think we’ve talked a lot about how important that is from a language and mindset perspective, but also from a medical treatment perspective going, you we now have huge databases around the world that have been collecting.

 

Clinical data on people living with MS for a really long time. And sort of, guess paradoxically, the fact that we have can look at so many different people means that we can almost do a better job of looking at the individual because now, you know, we’re not quite there yet, but we’re hoping to shift over the next few years to a point where we can take a person and say, okay, well, you know, based on all of the information that we’ve recorded over the past 10, 15, 20 years, this is our best guess in terms of what your future with MS looks like. And so this is what we think for you. This is the best treatment that you should go on now. These are the other things that you should be looking at. You all of that work can be done now. You know, 20 years ago, it was a, have some brochures and decide what you think might be best based on, know, we’ve changed a lot, but it’s, trying to focus more on that individual. And then, you know, that obviously takes in, there’s a lot of lifestyle things.

It wasn’t enough that and individual things that need to be brought into those discussions. You know, where are you at in life? Are you, you know, is career a big focus? Do you want to be traveling? Are you going to start a family? All of those things be put into this discussion so that then you can, you know, stir it all around and work out, you know, what is then the best thing for this? having an idea of, you know, this isn’t a lucky dip where we’re just pulling something out and hoping for the best, but we’re now shifting to, I should say that that’s how things had to be, because we just didn’t have the information that we have now, right? We’re building this, this evidence base, but being able to have someone sit down and talk to you and say, we think this is going to be the best and having that as a two way conversation is huge.

 

Karen (46:08)

More options for treatments that are disease-modifying treatments, and also just lifestyle-modifying treatments. There’s so many more things. It was really interesting to listen about stigma that people live with whenever they’re disclosing their MS diagnosis. And so interesting to me to even think about how are you going to disclose, and who do you need to disclose to, and who don’t you want to disclose to. This is my first time actually disclosing myself. So I not open about this to people that I work with. And if they see this then that’s great.

 But this is just where I am in my journey. And it was really, really interesting to listen to the anxiety that that causes. And what do we hold back? Do we hold back on bladder symptoms? Because we don’t want to share that with somebody, but we will say our diagnosis or are we okay with physical things, but not cognitive things. So many, so many pieces like that. And I think that sometimes those get left out when we’re working with MS nurses who are particularly and in Canada, they’re entirely around disease modifying therapies and specifically drug companies. And here we are now, and people are living for much longer, and they’re living for much longer without disability. And one of the sessions that I went to, Alex, I think you were there too, was around treatments for menopause. So we know that this is a gender disease that it’s different in men and women and how they experience things and certainly around things like having children and going through perimenopause and through menopause. And it was interesting listening to the researchers because they were saying that they were so focused on disability before that never before have they had women starting to tell them that they have menopause. But now that women aren’t as disabled at the age of 55, now they’re starting to talk about menopause. And it just made me realize how much sometimes it’s difficult to be listened to or it’s difficult for healthcare practitioners to listen to people. Because I bet all of those women that were also disabled were also having symptoms of menopause in addition to the disability that they were feeling. There’s lots of good work that’s happening around menopause in terms of looking at should there be some gynecologists that are also working in this neurology space so that they can look at how these work together. just a little plug for anybody that is in a perimenopausal stage with me, that good things are coming.

I think that’s really important. And I think I was really, really warmed. I found it so positive, the sheer quantity of discussions and presentations and gender topics on the topic of lifestyle.

 

Alex Holden

Living well is more than just the pillars of the Overcoming MS programme. It’s menopause, it is your sex life, is whether you disclose whether you have MS at work because you’re concerned that it might impact on a promotion or even employment in general. It’s all these different dimensions. And I think that the representation, Brett, you touched on the nurses’ sessions and when they were talking about things like shared decision-making,

And even some of the presentations about trials and just talking about listening to people with MS a lot more. I do think that message was coming through really strongly.

I do think there was some really positive messaging coming out of ECTRIMS a lot of work in progress, but just the sheer volume of presentations and conversations about lifestyle, far more inclusion of people with MS, I do think it’s a positive point to end on, that it’s definitely sort of the up direction and a lot to feel positive about.

 

Brett Drummond (49:46)

Yeah, I completely agree. And I think this is, mean, I’ve been fortunate enough to go to ECTRIMS for, think Berlin in 2018 was the first one I went to. So a bit of a seasoned pro at walking around the venue and stuff now and trying to, trying to get through the conference, but it’s very different now in terms of those topics and representation in the program. And I think the, if I was to say one thing about that, that is because of the voice of people living with MS. Those changes don’t happen necessarily because I mean, researchers are obviously keen to talk about the things that are there, but I think this is hugely a push because of the MS community has made it very clearly known that as much as they’re interested in the basic science and they want new treatments and they want to understand the disease better, they also want things that are going to help them here and now. And that symptom management, that’s lifestyle factors and the research community, the healthcare community have listened to that and it’s now a big focus of the conference. And so that means keep shouting from the rooftops about things that are important for you because that leads to change and it leads to it being discussed at this huge research conference. And it means then we can talk about it during the patient community day event.

 

Alex Holden (51:01)

Brilliant, yeah, thank you. A huge thank you Brett and Karen for your time for today’s webinar.