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- [00:05]
A
Hello and welcome to Breaking It Down, a podcast from the Ms. Trust. I'm Nick and we are joined by our host, Helena. Hi, Helena, how's it going?
- [00:14]
B
It's good. We're finally getting to see some sunshine, which is nice. How about you? How are you, Nick?
- [00:20]
A
Yeah, good, thank you. Very good. So, yeah, so we've got really exciting episode today, Helena, haven't we? So this is part two of our focus on progressive Ms. And we're going to be having a bit of a deep dive into that topic. Plus we're going to find out how it's treated and we are going to find out a little bit more from our content team here who've just brought out the book Progression in Ms. That's.
- [00:44]
B
Right, that book is out now, so you can, you can head to our shop and download a digital copy straight away if you want to. But before you rush off and do that, let's talk a little bit about treating progressive Ms. I thought in last month's episode we had a guest on called Yvonne and she was talking a little bit about when she was diagnosed with primary progressive ms, that she was told that there was no treatment for progressive ms, which was obviously very devastating thing to be told when you've just been diagnosed with progressive Ms. Yeah, definitely.
- [01:23]
A
We hear that one quite a lot, don't we Helena, at the Ms. Trust? So we often hear from people who are saying, you know, there's loads of treatments for people with relapsing, remitting ms, but what is there for people with secondary and primary progressive ms?
- [01:40]
B
And obviously treating Ms. Is a really complex thing to start with. And we've done a podcast that was discussing the so called DMDs, you know, disease modifying treatment or disease modifying drugs. In the past, we can link to that as well. But quite often, often we forget that there's also a lot of other treatments that are involved in Ms. Care, like, you know, symptom management and there is, you know, things like exercise and lifestyle changes and therapies that there's a lot involved in the world of, of treating Ms. So to really understand what's out there for people with progressive MS, specifically I spoke to Dr. Emma Tallentire, who is a neurologist and researcher at Cardiff University and we spoke to great lengths about this topic.
- [02:35]
A
Yeah, definitely looking forward to hearing from Emma again. She was popular last time she was on our podcast, so that was great. And we also will talk to Ali and Gemma from our content team here. As we mentioned earlier, it's about that book progression in Ms. But before we do that, let's start off by hearing all about treating Progressive Ms. With Dr. Emma Tallentire.
- [02:56]
B
Welcome back. I am here today with Dr. Emma Tallentire, who has been on the podcast before. She is an neurologist and a researcher, and we're going to be chatting a bit today about treating progressive Ms. Hi, Emma.
- [03:10]
C
Hi there.
- [03:12]
B
Before we start, would you mind just telling our listeners who you are?
- [03:17]
C
Of course. I'm Emma Talent. I'm a doctor working in multiple sclerosis. I work in Cardiff in South Wales, and I spend sort of 50% of my time looking after people with Ms. And doing clinics and so on, and then about 50% of my time in research, particularly looking at clinical outcomes and the way in which we design and deliver clinical trials.
- [03:43]
B
And that's why we thought you'd be a good person to talk to us through some of these questions that we have about how to treat progressive Ms. Now, starting off, there's often this assumption that there isn't any treatment for progressive Ms. Could you provide us a little overview on what treatments are currently available?
- [04:04]
C
Yeah, sure. I think you're right. I think this is something that people articulate to us in the clinic as well, that a lot of the licensed therapies are for people with relapsing, remitting Ms. And it leads us to feel that sometimes there isn't much for people with progressive ms, but I would say that it's worth thinking, you know, from the simplest through to the most complex things. So I think in terms of simple things, we shouldn't underestimate some of the treatment, which is to do with lifestyle, things about physical activity, things about diet, about sleep. There's quite a lot about symptom management that we should be speaking to people about in the clinic, whether it's management of, you know, bladder, of spasticity, of fatigue and things like that. And then, of course, there are now some licensed medications for people with progressive Ms. Who have ongoing evidence of inflammatory activity. So in the uk, that would be saponimod for people with secondary progressive Ms. Who still have either relapses or radiological evidence of activity, and ocrelizumab for people with primary progressive Ms. Who also have evidence of either relapses or inflammatory activity on their mri. And some people with secondary progressive Ms. Would also choose to take interferon. That would be the other treatment that would be available there. And I think we'll speak later in the podcast about some of the therapies that are just approaching the Management of progressive ms, because I'm pleased to say that it is a growing area.
- [05:40]
B
Yeah, yeah. Certainly when I was first joining the Ms. Trust and we reported on any disease modifying treatment, there was nothing for progressive Ms. So it's nice to see that it's moving along those lines. So drug treatments can be used to treat the symptoms of progressive ms, but they're often used along other therapies. Could you talk about how rehabilitation therapies can help with symptom management and maintaining good health more generally?
- [06:11]
C
Yeah, I mean, I think it's so important. Again, I think in the clinics, as neurologists, we often spend a lot of time thinking about the tablet treatments or medication treatments, but, you know, I wouldn't want to sort of under emphasize how important it is for those to be delivered alongside the other therapy interventions. So, for instance, physical therapy or physiotherapy. I'd probably prefer the use of physical therapy because I think sometimes people say, you know, I haven't had any physio for a while, but I think my aim working with people with progressive Ms. Is to encourage everyone to be and to remain physically active. And that doesn't necessarily have to be physiotherapy in this sort of truest sense. So, you know, there are lots of benefits of physical activity. We know that people's outcomes with Ms. Are better, but there are, of course, general health benefits, cardiovascular health and so on. There are so many social benefits, you know, depending on what sort of physical activity you undertake and sort of mental health benefits and things like that. So, you know, physical therapy. So working with physios, thinking about which community sort of facilities have things on offer for people with Ms. It might be an exercise referral scheme or a group or a class. And I think it's important that physios listen to people with progressive ms, not only for what are the barriers that I face in accessing, you know, gyms or classes or whatever, but also what are the things that I enjoy, you know, so there's no point in sending someone to a yoga class if they have just never enjoyed yoga and they much prefer to do something else. So that's sort of physical therapy. And then I think, you know, there are certain aspects to physical therapy that could work on, for instance, balance. So falls prevention, could work on flexibility and sort of prevention of spasms. It could even be. Our physios are doing quite a lot of work in Cardiff at the minute on breathing exercises for people with more advanced, advanced disability who might experience more chest infections. And it's trying to prevent those. So lots of physical things and then occupational therapy. Well, you know, for people listening who aren't quite sure what their occupational therapist does, often a wide range of things to do with functional activities. So things like it could be helping people to address issues with employment, whether that's trying to remain in work or trying to retire through ill health, or whether it's kind of barriers and needing someone to talk about reasonable adjustments with employers and things like that. It could be to do with activities. So our occupational therapists in Cardiff have done some brilliant things, like recently a scheme called Down To Earth, where people were in an allotment and doing some gardening work as a kind of means to explore people's function and also to kind of provide social activity and so on. And then occupational therapists can sometimes give interventions for things like fatigue and sort of living well with Ms. So managing some of those silent symptoms, that can be quite troublesome. Psychological therapy would be the other sort of third thing that I'd highlight. So not all Ms. Services have a dedicated Ms. Psychologist, but there will often be access that Ms. Services can link patients to and that could be helping to deal with mental health, things like anxiety and depression. It could be cognitive problems that are impacting and there are various sort of approaches to those symptoms.
- [09:32]
B
I think it's so important to talk about the other teams. I always find OTs are a little bit like the unsung heroes in the Ms. Treatment world, aren't they? Because there's so much things that they get involved in and certainly since my time at the Ms. Trust, learned an awful lot because when you just hear the word, you kind of think, oh, it's just to do with work placement and.
- [09:54]
C
Yeah.
- [09:54]
B
And equipment. But, yeah, certainly learned that they. They do an awful lot of interesting things.
- [10:00]
C
Yeah.
- [10:02]
B
So when we're looking at progressive ms, are there any symptoms in particular that should be treated or managed early?
- [10:11]
C
Well, I mean, I think what I would say about Ms. And I think, you know, equally or perhaps particularly relevant to progressive ms, is that I think it's just about prioritising the individual and their needs. So, for instance, recently in Cardiff, we've been exploring something where we send someone a link before the clinic that allows them to give a bit of thought and time to prioritizing their, perhaps top three things that they want to discuss at their annual review. I think recognizing that sometimes as a clinician we have an agenda and we think, oh, I'd like to talk to this person about their disease modifying therapy or their Blood test results or something. But actually they may want to talk about, you know, three quite different things. So I'm not sure that I'd necessarily say there are certain things that need to be managed early, but I would say that it's worth, you know, before a visit, thinking about what are the, you know, two or three things on my agenda that I absolutely have to cover today. And I think that will be helpful to your neurologist or your nurse or therapist, you know, and it will make you feel like you've had the chance to direct that consultation.
- [11:23]
B
Brilliant. People with progressive Ms. May end up on multiple medication to treat different symptoms. How should someone, or how often should someone's medication be reviewed to ensure that they're still working for that person or not interacting with other drugs can get quite complicated. This.
- [11:44]
C
Yeah, absolutely. You know, and I think coming back to, you know, what's the clinician's agenda when you have an annual review with someone? You know, I think quite often for me it is medication. So that would certainly be an opportunity at the annual review. I'd like to think we would reviewing things even more regularly than that in terms of with the team, the nurses and others, but absolutely, I think at least annually it's really helpful. Take a list. I mean, sometimes your neurologist will have last year's list and it may have changed. You know, it's really helpful to take a prescription or to write down what you're taking. And I think the sorts of things we should be reviewing is, you know, do you still think this is helping you? There are various ways to know that. So when we're talking about symptomatic medications, you know, for pain, for spasticity, for bladder and things, you know, I think with the best will in the world, most people miss the odd dose. And it's worth thinking about what happens when I miss a dose. Do I notice a difference? Am I still convinced this is really working for me? And then likewise, if I miss a dose, am I freer of side effects? You know, so I think it's worth us weighing up. You know, many of the medications for bladder, for pain will have sedation as a side effect. And, you know, are we making fatigue worse and not really benefiting, you know, the symptom that we're supposed to be treating? And, you know, it's important that your neurologist knows what you're taking for other conditions. You know, you may be on medications for other conditions that are impacting on your symptoms, that are interacting with some of the neurology medications and so on. So, yes, I think. I think we are all responsible for starting medications and probably not being very good at reviewing them each year to say, do we really still want these on board?
- [13:28]
B
It feels like it's a whole mathematical equation with all these different things at.
- [13:33]
C
Times, you know, it often is. And I think the other thing I'd say is that, you know, people listening with progressive Ms. Should feel empowered to sort of direct their clinicians about what they believe is working, because I think as a clinician, you want to try and give recommendations and advice, but I think everyone's different in the way they respond to these medications. And I think that I will often want people to know what's available to them. So I might want to say, look, there is a choice of three or four different pain medications that if these symptoms get really troublesome, you can have. You can access, but I'm not necessarily saying they should have them. And if that person makes a judgment that I would rather manage this pain and not have the sedation of those medications, then I think that is, you know, the right decision. I think for us, we're just trying to help people to work out what's available. So, yeah, it's. It's important to feel like you're listened to when you say, actually, I've. I've tried that, but for me, it wasn't the right thing.
- [14:34]
B
So I was wondering one thing when it comes to. Because, like you said, you know, you review the. The drugs on your app when you see your neurologist or your Ms. Team. But how involved does the gps get into. Into this? Because obviously they will be prescribing medication as well.
- [14:50]
C
Yeah, I think it's very variable, actually. So it's variable hospital to hospital, and it's also variable for me, within Cardiff, GP surgery to GP surgery. So, you know, there might be various reasons for that. I think that some GPs will feel more confident than others in prescribing in certain areas. I think some GPs are at absolute capacity and find it very difficult to take on the initiation of medications in particular, and titrating up doses and stuff. So they want the specialists to do that. And sometimes there are ways in which the drugs are regulated where the approval system says that they should be initiated by a specialist and not by a gp. I think, in my experience, I think the gps can play a really complementary role. So, for instance, you know, the majority of them will be quite happy to put things on the repeat prescription once they've been initiated and sort of up titrated by a specialist. And actually in many times when it's medications they're confident and more familiar with or that are clearly approved by, you know, committees like the NICE committee, they will be willing to initiate things as well. I think sometimes, you know, people feed back to us and say, gosh, it's just so hard to get in with my GP to get that first prescription, could you please provide it? You know, and there, there are sort of complicated funding rules in different parts of the UK for why sometimes specialists want the prescriptions to be initiated and then taken on by gps. So I think we have to try and work together as best we can.
- [16:17]
B
There are many disease modifying drugs for people with relapsing, remitting Ms. We already talked about this at the start a little bit and you said, you know, we have two drugs, well, three drugs, I guess you saying that gets used sometimes in treatment for progressive Ms. Do you think that the research focus is shifting a little bit here when it comes to, to treatment?
- [16:42]
C
Yeah, I mean, I'm pleased to say that the research focus has really changed in the last sort of 10 to 20 years. I think people are recognizing that there are still many questions to answer in the management of people with relapsing ms, but certainly the huge unmet need is the modification of progressive Ms. So I think there are some really exciting, interesting things coming. I mean, there have been some immune medications that have, you know, reported even in the last year. There was a positive trial on one of the BTK inhibitors for secondary progressive Ms. So that was a Hercules trial that was reported at the European Ms. Conference in, in September that people who had less active secondary progressive Ms. Benefited. So, you know, I'd already mentioned that saponimods available to people with secondary progressive Ms. Who still have relapses or still have inflammatory activity on their scans. The interesting thing about the Hercules trial was that it tried to recruit the other type of people with secondary progressive Ms. Who didn't have recent activity and that they, they seemed to benefit and the benefit was in trying to reduce slightly the progression. So not stopping progression, but trying to slow it down. The Perseus trial is the sort of partner trial using the same BTK inhibitor, but in people with primary progressive Ms. And that's due to report soon. So there are some immune drugs that, you know, probably still will benefit. The Chariot study is just approaching at the end of this month, completion of enrollment. So that's really exciting. And that's another immune medication, cladribine, looking at whether that benefits people with both Primary and secondary progressive Ms. Who already have slightly more advanced disability, but seeing whether in particular it can slow down the progression of disability affecting the arms, which is really important in maintaining people's independence. So that's fantastic. And then I think there's a recognition that some of the future medications and the unmet need may not be immune medications. They may be medications working in slightly different ways. So there are two terms that we often use in this area. One is neuroprotection, so in other words, protecting the nerves and trying to stop them from dying away. And then the other one is remyelination, so trying to actually regrow and regenerate myelin that's been lost. Now, I think the remyelination trials are largely focusing on people actually with sort of earlier relapsing, remitting disease. But I would say that the neuroprotective studies, you know, continue to be very challenging but, but somewhat exciting in, in that they are, you know, moving through the stages. So for instance, the Octopus trial is this multi arm, multi stage trial, which means that we can be a bit more efficient in the way that we trial medications. And that's looking at, at the moment, two different, what we would call repurposed medications. So that means medications that have already been used in other areas, and the advantage of that is that they're still somewhat tried and tested in human with disease, so they're not a complete, unknown investigational product. And the OCTOPUS study has already completed enrollment in stage one, and that was with two medications, alpha lipoic acid and metformin, compared to a placebo. And that's now moving into stage two. And there may be additional medications that we see on the horizon in that study in the next year or two.
- [20:12]
B
It's very exciting stuff happening then. It's very nice to see this moving forward.
- [20:18]
C
Yeah, absolutely, yeah.
- [20:21]
B
Why do you think that it's harder, or rather taking longer to find treatments to target progressive ms?
- [20:29]
C
Yeah. So, I mean, the challenges are for several reasons. One is that ms, as you and the listeners know, is a lifelong illness. So people live with Ms. For many, many years, and the accumulation of disability is variable, for one, but in many cases gradual. So we would be expecting people to accumulate disability over 5 or 10 or 20 years. So studying the outcomes that are important to people takes time. And it's very hard if you just follow someone up for six months and look at how they've changed over six months to predict really accurately whether a medication is working for them or not. You know, the ideal scenario would be, you'd give someone a medication and follow them up for 20 years, but that's clearly not feasible. So one of the things that has had a lot of work, I suppose, invested, and it's still really ongoing and a bit of an unmet need is having really good, what we would call surrogate markers. So that means something you can study over a quite short period of time, like six or 12 months. That's a really reliable predictor of whether a medication is going to work on disability. So examples of surrogate markers would be like brain scan markers. If someone has an MRI scan, one of the common things we do is we look at the size of the brain, the volume of the brain, we call it, and then how that changes over quite a short period of time can be quite predictive of whether the medication is going to be successful in improving someone's outcome. When we. When we think about disability, but I think we recognize that we probably need to prove those measures, and it may be that we combine, you know, an MRI with a blood test or with another measure of the way in which the nerves are functioning. It might be that we need to combine, you know, MRIs and blood tests with other, what we would call patient reported outcomes or even things like wearables. You know, we're often wearing smartwatches and so on, and whether we can look at changes in people's walking pace or walking distance, and that might be a little bit more sensitive than some of the measures we have at the moment. So that's sort of a couple of the reasons, you know, the length of time it takes to study things. Have we got really good markers? And then being honest with you, I mean, you know, recruiting to studies, getting sites involved and delivering studies, you know, that's something that I'm quite involved in, in my sort of research time. And it's a huge challenge. I mean, even the nhs, as we know, is just facing such challenges for being, you know, at capacity with long waiting lists and so on. So asking those same clinicians to give time to, you know, run research studies, with all of the sort of bureaucracy that we face when we're doing that, it is a big ask. And of course, you know, the funders of research, you know, would like, would like to be able to give more, but they're equally stretched. So sometimes you're asking research teams to deliver these trials on really quite a shoestring budget. So those are the sorts of things. But I mean, you know, that paints quite a negative picture of why things take so long. But I think the Future is promising because of the way in which trials are being designed in terms of better outcomes, in terms of that efficiency, like I gave the example of the OCTOPUS study, and also the way that the international community is working together. So, you know, I'm sure people listening might be aware of something called the Progressive Ms. Alliance, which is an international network of researchers. And that's really important because it's making sure that people aren't duplicating work around their world and they're not competing with each other, they're collaborating with each other and so on. So all of those things, I think, leave me feeling fairly optimistic that we will see some breakthroughs for people with progressive Ms. In research in the coming years.
- [24:08]
B
That's brilliant. That's really exciting. You already mentioned quite a few health professionals that might get involved in supporting people with progressive ms, but have we got any more that we should do a shout out to?
- [24:23]
C
Yeah, absolutely. I mean, it's, you know, it is such a multidisciplinary, you know, approach that we should be taking. And I guess the disciplines that I think of when I say that, apart from the things I've mentioned, I mean, I didn't really give us a big shout out to Ms. Nurses because we were talking mainly about therapy interventions earlier. But clearly the Ms. Nurses are fundamental in delivering care and many people listening will know and will have interacted with their Ms. Nurse. There are other things, like wheelchair services, that sometimes it's easy to forget about how important that kind of thing could be. So these are experts that think about seating. It might be a wheelchair, it might be a static chair that you have in your home. They look at whether those are, you know, appropriate for you in terms of your posture and your positioning and your ability and your upper body strength and things like that. They try and make sure that people are comfortable, that people aren't at risk of getting pressure areas from sitting and things like that. And likewise, similar sort of experts think about what we'd call orthotics. So they would be devices that people might wear on their body to try and improve the way that they function. So it might be, for an example, something that lifts up someone's foot, if someone has a foot drop to stop their foot from catching on the floor and causing falls and discomfort and so on. So orthotists and wheelchair services, speech and language therapists, really important for people who are experiencing difficulties with swallowing. And some people, you know, might experience some difficulties with communication if they have weakness of the muscles of speech. So speech therapists would deal with both of those sorts of symptoms. Actually, you know, opticians really important when people come and they often say, my vision is deteriorating, is that my Ms. Or not? Sometimes a neurologist isn't the best person to establish that, actually. And it is really important to keep up with, you know, things like optician checks. Continence experts, obviously, is another big sort of group of specialists that I would regularly call upon and we have a fantastic relationship with our sort of bowel and bladder nurses as part of the Ms. Team and as part of the community teams that serve people with lots of different neurological problems. Pharmacists. You know, it's growing that we have an Ms. Pharmacist on the team. We're lucky enough to have one in Cardiff. And it's hugely important because you can imagine a lot of the medications we're prescribing, either disease modified therapies or symptomatic medications, as you mentioned before, they can interact with each other, they can kind of undo each other's benefit and so on. So I think having pharmacists on the team is really beneficial and individuals with Ms. Might find more and more that they are interacting directly with their ms, pharmacist consultations, telephone calls and so on. I think the final thing I'd say is social workers and then third sector organisations, because, you know, quite often if I say to people, what are the top three things you want to discuss today? It might often be things like, am I getting the right financial benefits? Could I. Could you help me with my PIP application, which has now been, you know, declined several times and I'm not quite sure why I need to be rehoused because I can no longer, you know, the place I'm living is no longer, you know, fit for me and so on. So I think those sorts of organizations can be really key in helping with those sort of practical things. Yeah. So lots and lots of people and I think you have to see your neurologist or your Ms. Nurse as your sort of care provider, but almost project manager in terms of linking in with all of those different services.
- [27:52]
B
Yeah, it's so important, isn't it? And I guess that's one thing that where the Ms. Trust like to help out, because we often signpost people to who they need to talk to as well if they. If they can't get a hold of their nurse or neurologist. But yeah, there's a lot of people involved, aren't there?
- [28:08]
C
There are, and I think it's important to know about them because sometimes When I say to people, actually we've got this individual we could link you into that can really help you with your PIP form or something, you know, it's like, gosh, I wish I'd just known that. Struggled with it on my own for many years. So it's definitely worth asking your team who can you, you know, and it's just signposting, isn't it? It's not, it's not a lot of work for your team to be able to say yes, I can, you know, put you in touch with this person.
- [28:32]
B
Brilliant. Now, people with progressive Ms. Quite often feel forgotten about Ms. Nurses often spend a lot of time monitoring disease modifying treatments for people who's got relapsing, remitting Ms. How often should someone with progressive Ms. Actually see their Ms. Team and what should from those appointments and how can you get the most of them? You already said a little bit about preparing for them, but yeah, I could.
- [28:59]
C
Say a bit more about preparing and I think the frequency will differ but you know, and it, and it depends often on people's needs. So we are quite keen as a service to be flexible in the sense that if someone's going through a really rough time, whether it's with symptoms or you know, things outside of their ms, but just needs a bit more contact, I'd like to think that we would try to make that happen during that period. But you know, the, the default I would say for most teams is going to be an annual review. And I think what I recognize and people you know, that come to see me will reflect on is that that's really not very often and there's often such a lot to cover in quite a short appointment. So I think the preparedness is really important. And at your annual review I think it is really helpful to bring something written down. You know, I'm not suggesting that you take reams and reams because it might take your clinician all the time to read that and not have the conversation with you. But I think it's really important to, as I say, take along with you. These are the three things that I absolutely want to discuss today. Let me not forget them. I think it's great to bring your medications written down, ideally something you can hand to your doctor and leave with them, you know, because then it stops them having to spend some of the consultation writing that down. They've got it already and it is really a chance to go over what are the main challenges that I'm facing, what are the main symptoms that are troublesome. So in Terms of what to expect, I think you should expect to be able to shape the agenda yourself. I think that your clinician will undoubtedly have things that they might need or want to speak to you about. So they might say, look, I must cover with you that your MRI showed this, or I must bring up the fact that, you know, I'm aware that you've been contacting us with these symptoms, but I think largely you should expect to be able to shape those appointments and to try and get the most out of them. I think it is preparing for them almost in a way that you would for, you know, a kind of. Well, I think just feeling like you want the ball to be in your court from the. From the outset. So, you know, what are the things that you want to cover? What must you make sure that you don't leave the room without discussing?
- [31:15]
B
Yeah, I think when we've done. We've done a few episodes actually, specifically on how to prepare for both seeing neurologist and an Ms. Nurse. And we always get that advice about. Think about that question that you will think of just as you touch the door when you're about to leave. Because that quite often happens, doesn't it?
- [31:31]
C
Yeah. And I would say, I mean, maybe one question that everybody should be making sure they ask or they already know the answer to is, how do I contact you in between my appointments? Because I would always say to people, we see you annually, not very much. I want to know that in between the appointments, if you have a question for me, if you need to contact us, you know, this is. And I would always make sure they've got the email and the phone number. Different services might interact in different ways. It might be email, it might be telephone, but I think that's a really key question. So that when you do leave, if you do think of a question five minutes later that you forgot to ask, at least you know how to get back in touch.
- [32:06]
B
Yeah. So you don't have to wait another year.
- [32:08]
C
Absolutely.
- [32:11]
B
Now, at the start, you mentioned a few of the importance of lifestyle as well as, you know, medication and treatment, but is there any evidence to support the use of complementary therapies in progressive ms?
- [32:25]
C
Yeah, so it's something that people ask about a lot. And I think, being honest with you, it's quite a difficult thing to research, you know, for various reasons. I mean, some of the complementary therapies, you know, it's hard to find a sponsor that wants to invest a lot of money to study some of these things. Whereas, you know, the newer drugs, of course, they're owned by pharmaceutical companies that have, you know, heaps of money and want to run trials and things. But I think it's also quite tricky because if you think about something like diet, that's something I spend quite a lot of time thinking about. It's not necessarily complementary therapy, but it's certainly a lifestyle choice that is complementary to your medications and your physical therapy and so on. I think it's quite difficult to run trials of things like diet just because of people's adherence to it, people's choices, and the fact that there can be quite a lot of what we'd call confounding. So people that want to adhere to certain diets might also be the people that want to take exercise and want to not smoke and things like that. And those things might interact and benefit in a way that's a bit hard to unpick. So complementary therapies. I would say that it's not a very evidence based area, but I would say that it doesn't stop me from discussing it with people in my clinic. And the sorts of things I encourage people to think about is, is there any sort of anecdotal evidence or kind of supportive evidence? It might not be really strong evidence from a trial, but there might be some signal out there, number one. Number two, I think it's really important to think about harm. You know, is there any evidence that something could harm you? And I'll give an example in a second. And then the harm could be financial, you know, so if you're spending heaps of money on something that your neurologist is saying, look, I'm just not really sure there's really any evidence for that. And scientifically I don't think there's a very strong rationale for it, then I would dissuade people. But on the other hand, there might be something that's, you know, really quite cheap and someone isn't sort of spending their life savings on it, that I would say, well, look, if you feel it helps you and it's not harming you and it's not costing you the earth, then I think that's okay. And you know, I think the other thing to say about certain complementary therapies, if they're sort of herbal remedy type of therapies, is just checking with your pharmacist or your neurologist, because, you know, there have been examples where something that seems quite sort of innocuous can, can actually interact with some of your prescribed medications. And if your pharmacist doesn't know, you're taking. Then that can be a bit tricky. So those are the things I'd encourage people to think about. So, you know, at the moment, people are often talking about some of this CBT oils and things like this that you can purchase in health food shops now and again, you know, I think it's the case of, well, if you have tried it and you're saying to me in clinic, you know, I think it's really helping me, you know, what do you think, Doctor? Then I suppose I would go through that sort of checklist and say, well, look, how much are you spending on it? And, and, you know, is there any harm it's doing to you? Any side effects? I mean, the other thing to say is that sometimes even if we haven't got the strongest of evidence for something helping ms, there might be evidence it would help your general health. So, for instance, vitamin D might be an example of that. And, you know, we haven't got fantastic evidence that vitamin D is going to improve your Ms. In terms of slowing progression or anything like that, but we've got pretty good evidence that it will improve things like, you know, bone health and things like, you know, your general health and so on. So for that reason, because it's not too costly and it might have some wider health benefits and, you know, certainly encouraging people of supplementing with vitamin D at the amounts that are recommended by the association of British Neurologists and others.
- [36:08]
B
Yeah, there's a, there's a huge big market on this. We've spoken a little bit about it on the podcast in the past and I do remember we had one neurologist who said, just be careful so you just don't end up with very expensive urine. And I thought.
- [36:23]
C
Yeah, I mean, I think that's right. You have to be a little bit conscious that I'm certainly aware that there are some individuals who've tried to capitalize a little bit on this financially. So, you know, some prescribers or, or kind of complementary therapists who would, you know, put people on quite complex regimens of lots of supplements and lots of things and, you know, it can end up being really quite complicated, costly. So I think it is worth discussing with your Ms. Team just to sort of sense check, you know, is there anything in this? But lots of things, you know, people come and ask about lion's mane, about turmeric, about, you know, lots of other sort of supplements, and I think, you know, often our answer is that we, we simply don't know, but it's just applying that Checklist, I think.
- [37:08]
B
Yeah. So better to sort of bring along anything, even if it's. Yeah, even if it might be slightly out there, it's better to bring along. To make sure that it's not interacting with anything else that you're.
- [37:19]
C
Yeah, absolutely. Yeah. Yeah.
- [37:23]
B
Well, so my final question here then, what can people with progressive Ms. Do to look after their health and well being more generally? I mean, we've touched on a few of these already, haven't we?
- [37:35]
C
Yeah, I mean, I think there's lots. And I think that sometimes because of the hype that surrounds some of these medications, I think we forget that there's probably a huge amount people living with Ms. Can do to improve their outlook that, that actually, you know, is within their own sort of sphere of influence and not necessarily going to come from their Ms. Team. So, you know, things like a healthy diet, you know, it's not necessarily that there's a certain diet that I would, you know, recommend. People often come and say, well, I've heard about the, the Paleo diet or fasting or, you know, the different diets that are sort of overcoming Ms. And, and Jellinek and things like this. So. But I think it's more about having a healthy diet that again, has the wider health benefits. It keeps your body weight as healthy as possible. We know that having a healthy body weight is associated with better outcomes in ms, so your diet might be around just trying to have, you know, achieve your ideal body weight. Certainly anyone who's smoking tobacco, you know, should, should not be, if possible, if they have ms, because we know that that's associated with, with worse outcomes being physically active. And as I said before, I don't think it has to be the same for everybody, but I think there's. I was actually reading in the British Medical Journal this week that, you know, if there was ever any doubt about physical activity and improvement in sort of health outcomes in general. They've done this enormous kind of analysis of about four different trials, but it's about 2 million people in total were kind of included in the analysis. And this was, was the general population, including people with lots of different illnesses but not specific to Ms. And across the board, but actually more benefit as you got older was remaining physically active. And people we know with Ms. Will face all sorts of barriers when it comes to being physically active, you know, people that have less use of different body parts and so on. So it's really important that as Ms. Teams we're working with those individuals and helping them overcome their barriers. And our physios will be so experienced in saying you're a wheelchair user, you have, you know, limited upper limb function, but let me still do something that can maintain your physical activity at the best level we can. Maintaining cognitive activity, you know, so spoken a bit about, you know, interventions like psychology and so on, but actually people themselves maintaining cognitive activity. Again, I would encourage people to do what they enjoy, you know, not force yourself to do sudoku if you absolutely hate it. But I think being cognitively active might be socializing. It might be, you know, doing brain games and puzzles and so on. It might be reading, you know, so I think it's important for you to think about what, what you're motivated to do because it's more likely that you'll keep doing it. But that's really important. Equally, I think, you know, people's mood is so important, and I think that there are sort of interventions that your Ms. Team can help with. Certainly we've been really helped by having access to some local counseling services that we're able to refer to. And other people in other places may find that their Ms. Teams can also access similar things, or perhaps their gps can access similar things. But I think, you know, helping with your mood, again, it's going to be individual to you. It might be medications, it might be things that you're doing in your lifestyle, like seeking different types of social interaction, or it might be counseling, talking therapy, cognitive behavioral therapy, things like this that might be open to you locally. But we recognize that people's outcomes and, you know, in other words, how they rank their symptoms are quite linked to their mood. So people, you know, who improve that will often find that things like fatigue improve and coming to fatigue. So finally, I just wanted to make a mention to sleep because I'm almost getting to a point now where I feel like every consultation I have with people with Ms. And people with other neurological conditions, we should be discussing sleep, because there are just so many reasons why your sleep might be interfered with if you have ms, and particularly progressive ms, that, you know, sometimes there are things that might seem a bit simplistic that could just be very revolutionary in terms of managing people's fatigue and so on, if we can get someone's sleep right. So whether that's making their bladder better, whether it's changing their medications, as we've talked about, you know, even practical things about where they're sleeping and who with and, you know, whatever. So I think trying to get people sleep right is probably something else that people should be thinking about when they think about Their health and well being more generally.
- [42:17]
B
So lots of things that people actually can sort of start getting active. Well, I say getting active, of course, obviously one of them, but like actually approaching themselves.
- [42:26]
D
Yeah.
- [42:26]
C
And I would just, you know, again reiterate that, you know, sometimes in conferences we sit and we look at the results of studies. So for instance, I've mentioned the Hercules release trial. You know, it's very exciting to sit there and see a sort of positive result. But at the same time, when we look at the effect size of some of these medications, I truly believe that if someone was able to sort of have the support to allow them to manage their sleep and their mood and their cognitive activity, physical activity, their diet and their weight in a really positive way, I think the effect size would probably be even bigger than some of these medications. And I think sometimes we sort of forget to add, emphasize that to people. So I think people shouldn't be disheartened and they should know that if they put in the effort, because of course it is an effort, isn't it for any of us to manage all of those things well in our lives. I think they should feel that they, you know, they will have a benefit from that. It's obviously very difficult to know what the benefit is because a lot of people with progressive arrest say to me, well, you know, I'm on this medication that's supposed to be slowing progression, but I'm still getting worse. So I think the idea is that, you know, you may still get worse, but these things will mean that the pace at which things deteriorate rate should slow. Yeah, so it's definitely worth thinking about all of those aspects to lifestyle and.
- [43:41]
B
Self management and can people get some help with it if they don't know where to start? If they go to their Ms. Team, will the Ms. Nurses be able to point them in the direction of where to go?
- [43:53]
C
Yeah, I mean sometimes it's getting help in this sense of support. So as I said, you know, some of the things we've done in Cardiff, again as you mentioned, a big shout out to occupational therapists because our local OT here, here has run some fantastic groups that, that are called Living well with Ms. So it kind of really addresses what we've just discussed about how can the person with Ms. Feel empowered to sort of change things about their lifestyle that are going to have a meaningful, you know, benefit to their Ms. Outcome. So it might be that you have some support like that. It might be just talking through some of those things I've mentioned and saying, okay, think Help me think of a way to be physically active, cognitively active, you know, how can I, I troubleshoot these issues with my sleep or my mood? And then I would also say that again, looking at the Ms. Trust literature, looking at the Ms. Society literature, there's such an awful lot of really good, you know, I'll give people the Ms. Trust literature on fatigue and say, I know that you might read this and know an amount of it already. But almost always when I give someone the Ms. Trust information on fatigue, they'll say, actually there were still two or three things. Yes, I did know quite a lot of it because I've read around fatigue, but there were still two or three new things that I took away that I didn't know. So again, I'd really encourage people to go to those sorts of websites and look at some of the info that's there in terms of self management and empower yourself to do some of it.
- [45:16]
B
I think we shall end on that because that was a great saying. Thank you so much. It's been very, very interesting and yeah, great to talk to you again.
- [45:26]
C
Well, thanks very much for the invite. I've really enjoyed chatting about it, so thanks again.
- [45:31]
B
We are at that mid section in the podcast where if we were a commercial podcast, there might have been some adverts. But we are a charity so we don't do adverts. But we would like to take this opportunity to tell you a little bit about our own fantastic resources for people.
- [45:48]
A
With Ms. That's right, Helena. So if you head to our website, which is mstrust.orguk on there, you'll find lots of information and resources for anyone who's impacted by Ms. Since our topic today is progressive Ms. On there, you will of course as well find lots of information about progressive ms, both secondary and primary. And if you head to our shop, you can order a physical copy or a digital download of the book progression in Ms. That we've been talking about today. It is free for both the physical copy and the download, but there is the option as well to leave a donation if you feel that you would like to. And with that in mind, let's now head back over to Helena, Ali and Gemma so we can hear actually a little bit more about that book.
- [46:37]
B
I'm here now with not one but two of my Emma's Trust colleagues. Well, I'm gonna throw it straight at you. Who are you and what do you do at the Emma's Trust?
- [46:48]
D
Yes, I'm Gemma. I'm part of the information team here at the Ms. Trust and I write our website content and our book publication content as well.
- [47:00]
E
And I'm Ali and I work with Gemma in the information team and my role is the same as her. So focusing on writing content for both the website and for our publications.
- [47:10]
B
And today we're here to talk about the new book that we've just published that you both were writing. But can we start off with a little bit of background here? So what was our old information about progression and Ms. Like and how did we actually decide to update it?
- [47:28]
E
We've had two books around progressive Ms. In the past. The first one was written back in 2011 on primary progressive Ms. And there wasn't really a lot of information around at that time.
- [47:39]
C
So there was a little bit of.
- [47:41]
E
A bible on everything progressive Ms. And then we realized after having done that there was a bit of a gap and we need something around secondary progressive Ms. As well. And the trust had actually been involved with some research on the transition from relapsing Ms. To progressive Ms. So that sort of helped shape that book as well. Whenever we survey people, we always get back that people went more around progression in Ms. And we knew it was time to update these books because they'd become quite outdated and there was a lot of overlap in the content between the two of them as well. We, you know, we had a good look at what was there already and actually decided we just need the one book and we probably need to start from scratch again because things have changed so much in the last 14 years.
- [48:29]
B
And what does the book cover and who is it for?
- [48:33]
D
Yes. In terms of who the book's for, it's really for anyone with Ms. That's experiencing progression in progression in their ms, sort of no matter what, what type of Ms. They have. So I think it's a really important book because it will be of use to people, most people with Ms. At some point through their journey with the condition. So we can talk through some of the chapters that are in the book. So we cover sort of coming to terms with the progressive Ms. Diagnosis and also living with the uncertainty of what might come in the future. And, and we spoke to sort of health psychologists on this topic to help inform those chapters. A big chapter is around treating and managing progressive Ms. So we look at disease modifying drugs that are currently available, what might be coming up in the pipeline potentially. And then also we do a lot on symptom management, so we touch on the different drug treatments that might be used to manage symptoms. But we mainly focus more on the health professional Support. So different health professional teams that can support with certain symptoms in your Ms. And then we also look at sort of adapting to change in various aspects of your life, so family life, in your working life or socially, sort of changes you might have to make to continue living independently with Ms. Then some.
- [50:01]
E
Of the other things that we cover is we look at progression in Ms. And what is that? Because actually the language around progression has changed a lot. There's probably a lot of people going into clinics and you know, hearing terms like relapse associated worsening, pyramid progression independent of relapses, smouldering ms, silent progression and that kind of things. So we've, we've made a lot of effort to try and describe what some of these terms mean. We also talk about why, you know, there's such variability in progression, you know, why it happens at different rates and at different times to different people. It's a really big section on living well with Ms. So all the things that you can be doing for yourself, you know, to try and live better with Ms. And to help manage symptoms and prevent complications in the future as well. We also look at care and support options for the future if you ever find yourself in the position you might need, respite care or palliative care. And we also touch on advanced care planning as well. And then we finish the book off with a little bit about research. Not so much about individual drugs, but more at the approaches and how research into progressive Ms. Has changed us in the hope that we can speed up the process to find better treatments for progression. I think one thing I would say is it's, it's quite a long book. It ended up much bigger than we wanted it to be, but we really didn't feel like we could lose any of the information that was in there. So absolutely it's not something we're expecting people to read cover to cover. It's, you know, dip in and out if it find the bits that mean you. So if you're talking to your nurse or your neurologist and you don't understand the terms, I'm eating that, then you know the progression in Ms. Chapter is a good one to do with. If you're thinking about lifestyle changes, then Living well is perfect for you.
- [51:49]
B
So this book clearly covers a lot. It must have been quite complicated going about writing it. How did you approach it?
- [51:58]
D
It's quite a lengthy process, sort of start to finish. We use the primary progressive and secondary progressive books as a starting point point in terms of topics we wanted to cover. Then we had a big sort of planning brainstorming session where we went through all the possible topics we could, we could cover in the book and then we sort of streamlined that into the different chapters and what topics we definitely wanted to include. And then it's sort of a process of going away, looking at the literature so looking at what evidence there is in these different areas and looking at the research. And then we started writing and we had sort of, whilst we were writing we were also in touch with various health professionals that helped us review our review the content and check what exactly check that what we were saying is accurate. So there was quite a lot of, there were quite a lot of health professionals that were involved in the writing process with us as well. So we, we had feedback from neurologists that specialized in ms, Ms. Nurses, we spoke to a rehab consultant, health psychologists and then some researchers that are involved in sort of clinical trials as well. So yeah, it's quite a lengthy process.
- [53:14]
B
And were people with Ms. Involved in it as well?
- [53:17]
D
Yes. So we also had a team of reviewers who all had progressive Ms. So they read through every chapter and provided their feedback and they also shared some of their own personal experiences which really helped, helped inform the chapters and sort of shape them a bit better. Yeah, so all the reviewers that were involved for were people that had lived with progressive Ms. Quite for quite a few years and they were all really complimentary of all the chapters that they read and a lot of them said that they kind of wish it's something, it was something that they had had when they were first diagnosed. So hopefully other people with Ms. Will find it useful as well.
- [53:56]
E
Yeah, it was quite interesting as well. You know, some of the people living with progression for 20 years or more and they said they still learned new things from the book so hopefully it will be really useful to everyone.
- [54:08]
B
Speaking of learning new things, did you yourselves learn anything new when you researched it?
- [54:14]
E
I think for me it was just how much the thinking around progression has changed and I think that's partly done down to advances in things like imaging techniques and being able to measure biomarkers in the blood as well. And I think it's helping us understand the biology of progression more and that having a knock on effect on how we think about Ms. In general and it's always been divided into relapse and remitting, secondary progressive, primary progressive and there's a shift away from that and I think, you know, just learning about more about that and why that thinking is changing was fascinating.
- [54:54]
B
So where can people get a Hold of the book?
- [54:58]
D
Yeah. So it's available on our website. So if you go to mstrust.org uk shop, you can find the book in there. It's called Progression in Ms. You can order it for free as a physical printed publication or you can download it digitally as a PDF and we'll link.
- [55:18]
B
To it in the show notes of this podcast as well. So my final question here then. What would be your top tips? From researching and reading this and from working at the Ms. Trust for many years, helping out at the helpline and all these, you gained some knowledge. What would be your top tips for living with progressive ms?
- [55:40]
E
Be I think one of the strongest themes that came out for me is with the lack of really effective treatments for progression at the moment, just how important lifestyle and wellbeing factors are and looking after yourself. And it comes into so many areas. It's whether you've just been newly diagnosed with progression, whether you've had a change in your diagnosis, just helping you live with the psychological impact of that and how important it is in that, reducing the impact of some of the symptoms as well, helping prevent complications in the future. And also we have a big section on the impact of aging on Ms. And the changes in your immune system. And actually lifestyle factors can help moderate that impact as well.
- [56:31]
D
And I think all of those lifestyle and wellbeing factors, factors, they're all things that you can control and help you feel a sense of control with a condition that can be unpredictable as well. So, yeah, it's definitely important from the mental health side of things as well. The other thing I was just going to mention was because I wrote the chapter on treating and managing progressive Ms. And I think in writing that chapter it kind of highlighted the importance of being proactive in your care and, and being aware of the different health professional teams and services that are out there to support you if you get a new symptom or your symptom worsens or something changes. Just having that awareness so you know what support to push for can be really helpful. In that chapter we talk about neurophysios, occupational therapists, orthotics, teams, like things that maybe people aren't even aware exist to support them. So being aware of that and taking a proactive role in that I think is really useful. And then, then being aware of the latest research and news on Ms. As well. So if a new treatment does come up, you can talk to your Ms. Team about it straight away. Just things like that, I think are really important.
- [57:43]
B
Keep yourself informed and proactive. I Like that. Thank you both so much for coming on and chatting to me. Very excited about this book and it's out now and I thought it was really interesting to, to actually chat to the content team there, Gemma and Ali, about how the books were put together. You know, I've worked at the Ms. Trust for many years and, and you see these fantastic publications being done, but you don't actually realize how much work goes into this when it comes to not just the writing part, but actually getting all the feedback from the health professionals and people with Ms. And anyone who is involved in, in that sort of process. And there's been, you know, some kind of quite significant changes in this book compared to the last two books that we had before. So it was a whole new process of writing it. So I, I've had a look at the book and it's really, really good. So I, I can really encourage people to, to go and either download it or send after a copy. If you're in the uk, you can send after a copy. If you're listening from abroad, you will have to make do with the download.
- [58:50]
A
That's right, Helena. Really, really, really helpful resource. You know, really excited that it will be there for people living with progressive Ms. So make sure you do have a look at it as well and see if it's something that you would like to order.
- [59:05]
B
Yeah. And you know, one of the things that we did in preparation for, for this book was the interview with Dr. Emma Talent Hire. And I, you know, I listening back to it while I was editing this podcast together, you kind of realize how extremely complex Ms. Care it really is because it's not just like there's one doctor involved. You know, there's neurologists, there are Ms. Nurses, there could be physiotherapists, there could be OTs. You know, there could be also, you know, having all these different, different types of medications that might interfere with each other. I mean, it's, it's not easy. And, and, and I think she did a good, really good job of sort of untangling some of these pain points. And, and, and I think one of the things that really got me excited talking to her is how much the shift in focus on research has been on progressive Ms. Because like you said at the very start, there's always been some much talk about how progressive ms, it's not treatable. We don't see anything being done. There's nothing, you know, everything's just for relapsing, remitting. But it really has been a big shift in what is being done for, for, for, for new medications and new research into this. So I think it's, you know, watch this space there. It looks like there, there could be stuff coming up and I think that's, that's really exciting.
- [60:35]
A
Absolutely, Helen. I know that's right. And listen, if you do have any questions about progressive Ms. Or any questions about life with ms, please do contact our helpline. It's available from Monday to Friday, apart from UK bank holidays. And the hours that it's available are 10am to 4pm Outside of those hours, you can of course, leave us a message and we'll get back to you as soon as we can can. The number that you need is 0800-03-23839. If you'd rather not talk to someone over the phone, but you still have a question for the helpline team, you can email them and that's askstrust.org and we will of course link to all of these resources in the show notes.
- [61:24]
B
And speaking of getting in touch with us, you can find us on social media media on Facebook, YouTube, X tick tock and Instagram. And you can find this podcast in places where you would normally find a podcast. It's like Apple podcast, Spotify and YouTube Music. Please do get in touch with us and like and subscribe. But I would like to say as well from the content team that they mentioned how they get people with Ms. Involved in the process of reviewing new content and new publications. If you're interested in doing this for any future publications, please drop resources.org.uk and email because they're always looking for people to join the readers panel. So if you think that that could be an interesting thing to get a bit involved in in our work, please, please get in touch. And do please get in touch about this podcast and any future podcasts that you would like to hear from the Ms. Trust to let us know what you would like to see in the future and what you thought of this episode. You can either contact us via social media or you can drop us an email@commsistrust.org and we'll see you for the next one. Bye.
- [62:46]
A
Thank you. Bye. Bye. Bye.