Voiceover: 

Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis.  Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers and advocates.   

Julia Morahan: 

Hello and welcome to The Raw Nerve. I’m Dr Julia Morahan, Deputy CEO at MS Australia. And today we have an important conversation lined up for you.  

We’re going to find out about the new Monash University-led consensus treatment recommendations, which have been developed to guide best practice MS management of multiple sclerosis – or MS for short – in Australia and New Zealand, to provide evidence-based information to inform healthcare professionals and people living with the disease.  

These new recommendations will help health professionals navigate a treatment landscape that has changed vastly in recent years to the numerous new therapies. And we wanted to help our community understand how they and their healthcare teams can use them. Three of our panellists today played key roles in this project and we have also invited a person living with MS to talk about her lived experience and MS treatment journey.  

The new guidelines were released in February 2025 and supplement MS Australia’s new lifestyle guides for people living with MS and health professionals, which was launched on the 30th of May this year, World MS Day. 

On The Raw Nerve, we like to take a deep dive into the issues that matter to our community. And today we’re talking about a new resource developed by neurologists to help people living with MS and their care team make informed decisions about treatment. It’s a fantastic resource and great to see such a collaborative effort across Australia and New Zealand.  

More than 30 collaborators were involved via an MS working group of the Australian and New Zealand Association of Neurologists to develop the consensus guidelines. These included MS specialist neurologists, people living with MS, nurses, a physiotherapist, a psychologist, an infectious diseases physician, an immunologist, general practitioner, and MS support groups, our Member Organisation MS Plus and MS Australia. 

The new guidelines are an invaluable resource, especially for generalist clinicians navigating this rapidly evolving field. They provide a clear and ready reference to best practice evidence and expert consensus, an important milestone in MS care in Australia (and New Zealand).  

With the right information, support and resources, MS can be managed effectively to maintain a healthy and active lifestyle. And these guidelines provide a framework to empower people living with MS to have discussions with their doctors and make informed decisions about their treatment options. The guidelines will assist with treatments throughout people’s different life stages living with MS, for example, during pregnancy and possibly, when to stop treatment, if recommended to do so by their health professional.  

So, to tell us more about this resource for general neurologists and other care team members to help inform MS management of people living with MS, I’d like to welcome four guests into the studio today.  

Firstly, we have senior author, Associate Professor Mastura Monif, a neurologist and researcher from the Monash University School of Translational Medicine and head of Alfred Health’s Neuroimmunology Service. Welcome Mastura.   

Mastura Monif: 

Thank you very much for having me.  

Julia Morahan: 

And we have co-author, Associate Professor Douglas Johnson, Head of General Medicine and Infectious Disease Physician at the Royal Melbourne Hospital. Welcome Douglas.  

Douglas Johnson:

Thanks Julia. Pleasure to be here. Thanks. 

Julia Morahan: 

Thanks. Our third guest is first author, Dr. Jessica Shipley, an MS and Neuroimmunology Fellow at Alfred Health. 

And rounding out the panel, we have our voice of lived experience, researcher, Associate Professor Darshini Ayton from the School of Public Health and Preventative Medicine, Monash University. Welcome, Darshini.  

Darshini Ayton: 

Thanks for having me. 

Julia Morahan: 

Okay, so there are many ways to treat MS and people living with MS might find some treatments work better than others. Developing a plan with your healthcare team is the best strategy to manage your MS, including any medication.  

I’d really like to bring Darshini into the discussion at the outset. But first I thought it would be useful to mention that multiple sclerosis affects around 2.8 million people globally. In Australia, we know that we have around 33,000 people living with MS. And in 2021, the cost of MS was $2.5 billion. In New Zealand, MS affects approximately 6,000 to 7,000 individuals. 

MS most commonly affects women who are diagnosed in their childbearing years, 20 to 40 years of age, and is a complex condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves. Researchers are working hard to find a cure for MS. However, meanwhile, a variety of treatments are available to manage the symptoms, reduce relapses, and reduce disability progression. 

So, Darshini, the lived experience voice is incredibly important to us at MS Australia, as it helps grow awareness about MS for political leaders and other decision makers, the media, the general public and others. Would you be able to tell us a little bit about your initial MS diagnosis, subsequent MS treatment and management journey? 

Darshini Ayton: 

Sure. And uh thanks for this opportunity because I do think it’s really vital to hear from patients. And this is why also these guidelines have been so welcomed as a resource.  

But…I was diagnosed with MS at the age of 23. I presented with transverse myelitis and then four months later presented with optic neuritis. And I started on Betafaron and was a terrible patient on Betafaron because I just stopped because I didn’t like it. And I thought it made me feel sicker than I actually felt. Cause at the time I didn’t feel that bad with my MS symptoms. And then after that, thankfully a new drug came on the market, Tysabri. So, I started on that and was on that for a little while and then it stopped working. And then I went on Fingolimod, and I was on that for a little while. And then I think I became neutropenic to that, or something happened and I had to get off that. And then I went on Lemtrada, and I felt or thought that was going to be the cure-all and I wouldn’t have to have anything else after that, but I had a massive relapse after my second round of treatment and started on Ocrevus. And then I think my immunoglobulins got too low and so had to come off that.  

And so, I’m actually now an IVIg (intravenous immunoglobulin), but one thing I will say from the whole management perspective is again, one size doesn’t fit all. And I’ve just been so thankful that every time I haven’t been able to stay on a medication, there’s been another option available for me to go on. So yeah, that’s a little snapshot of my MS journey so far.  

Julia Morahan: 

Yes. And so, I think that really highlights a little bit about all the different medications that we do have available now. Right. And, and the decision-making that goes into treatment switching and how do you do that? And when do you do that? And taking the whole person into account. So, I think you’re a very good exemplar of someone who has kind of navigated through a lot of different treatment choices. And I guess we’re hoping the guidelines will assist with that.  

So, I want to speak to Mastura, Douglas and Jessica now about this piece of research that you did, these guidelines. 

Why did we need it? Why was it done? Why did you think it was so important to invest such a huge amount of time into producing this for us? I might start with you, Jess.  

Jessica Shipley:

Sure. Thanks, Julia. So, as you’ve mentioned, the research involved creating consensus recommendations for the best practice management of MS in Australia and New Zealand. And we did it because MS treatment has changed a lot over the last decade or two. 

And there was previously no research that outlined the treatments available here as well as most up-to-date treatment paradigm for MS. So, as an example, there’s a strong body of evidence now supporting commencing high efficacy MS therapies early after diagnosis, because we know this improves outcomes for people with MS. So, we wanted to ensure that this approach was clearly recommended for people with MS in Australia and New Zealand.  

And I’ll also just say that MS management can seem complex because the number of treatment options has grown significantly over time and we’re very fortunate in Australia to have access to so many different therapies. But each of the therapies comes with specific monitoring considerations and recommendations around situations such as pregnancy. So, our aim was to try to simplify the key considerations for different therapies in a concise resource.  

Julia Morahan: 

Excellent. And I think you have definitely managed that across the three of you and the many other panel members that were involved with this.  

Okay, Mastura, I was wondering if you could tell us a little bit about the consensus process and methodology that you went through in order to provide these guidelines. So, you did have lead authors, but we also had a large number of other experts involved in this process. And I think our audience would just be really interested to know how you tackled all of the evidence before you and made the recommendations.  

Mastura Monif: 

Thank you, Julia.  

So, with the initial process, we had mostly MS neurologists or neuroimmunologists invited through ANZAN, as you mentioned earlier, through the Australian (and New Zealand) Association of Neurologists. So, it was basically open for all of them to participate.  

And the original idea for this came from one of the ANZAN conferences where a bunch of neurologists, we were all kind of talking about, we need a guideline, we need something that’s standardised. And so that was basically the premise of it.  

But how the process evolved is, so we had consensus, we had statements essentially that were associated with…statements in regards to treatment and regards to switching medication and regards to diagnosis and regards to disease monitoring and regards to safety measures and regards to other risk mitigation and regards to stopping treatment and also special circumstances, for example, (you) know, ageing or pregnancy or when there’s infections.  

And so, during those scenarios, how would you, like what would be the consensus amongst all the neurologists? And as you know, many of the neurologists, if you pose questions to them, especially the MS neurologists, there’s always differences of opinion. And we wanted to take that on board. 

But we wanted to do it in a systematic manner. So, we used what’s called a Delphi process where, so there’s multiple rounds of voting and essentially the process, even though individuals can voice their opinion or their way of doing, you know, essentially going about particular treatments and so forth. But at the end of the day, we wanted to achieve consensus. So, if there was an agreement of 80%, then we…basically that met consensus.  

But there were some, for example, certain situations where we needed to go to the next round of voting and then the next round of voting in order to achieve consensus. So ultimately it was as objective as it can get. But as you know, with MS, it’s not, neurologists are only one part of the process. We can’t do everything. And of course, we don’t have the expertise and the knowledge to do that. So, we wanted to bring in our colleagues who are also involved in our day-to-day management of MS patients. 

And to do that, for example, Doug contributed immensely from an infectious diseases perspective, because again, there’s many situations where neurologists are at, even that they actually, don’t know it, what should we do? What’s the best vaccination to use in a particular situation or when to vaccinate and when not to vaccinate? So, I think it makes sense to bring the expertise of our colleagues.  

So, we had infectious diseases input, we had immunology input and also, our general practitioner colleagues, because as you know, with MS patients, once they’ve seen a neurologist, then they go back to the community. And we wanted to give our general practice colleagues a degree of confidence. So, when they’re monitoring for, like for example, for lymphopenia or when they’re doing the usual cancer screening, that they have some sort of guidance to go back to and go, okay, I’m actually following consensus. Even though we may not have 100% evidence for some of the monitoring protocols, but at the end of the day, this is the consensus that a group of experts have come together to provide.  

So yes, there’s limitations in the process, but it was very much multidisciplinary. And to be honest, from the process, it took a while to go through, but it was very helpful. We all learned a lot. And it was great to have Doug as part of the team because we learned a lot and it’s actually very helpful even to this day when we use these guidelines. 

Julia Morahan: 

Excellent. So, I’m going to ask you Doug to expand on that a little bit in terms of from your infectious disease perspective and being, I assume roped into this for your expertise to help our neurologists and GPs and others make better choices. How was your contribution within this process? How did it work? 

Douglas Johnson:

Thanks Julia. So, yeah, so both Jess and Mastura asked me to be involved in these guidelines. And it’s been a really collaborative process and been really fabulous to hopefully produce something that we think is of use both to patients and their treating clinicians.   

I guess with the disease modifying therapies, there is a risk of infection and that risk while small is real. And so, I guess the first is we wanted to people to be aware of what the potential risks are so things can be looked out for whilst people are on therapy. And then a really important concept is what infections can we prevent? And so, there’s a table to suggest pre-treatment screening to look for infections that are latent. So latent infections are infections that are lying dormant that can be reactivated with immunosuppression. And most of…many of these are treatable or there’s things that we can do to help manage those. 

And then a really important concept is making sure that patients are up to date with vaccine preventable infections. And a critical part for starting on these therapies is around the timing of vaccines. So, you know, we break down vaccines into inactivated and live vaccines and live vaccines can’t be given whilst on therapy. So, there’s really great, clear recommendations on the timing of when you should have these vaccines for maximum response but also, for maximum safety.  

And just to plug, I guess part of when there’s guidelines is that, you know, evidence change, and things change, and new information becomes available. And one of the really pleasing things for us is say with Shingrix, which is a vaccine for shingles. When we wrote the guidelines, we recommended that this should be given to most of our patients who have MS. And since writing the guidelines, the availability of Shingrix and for the immunisation program, the playbook has been expanded. And so that’s really welcoming, but not all of that’s covered in our guidelines because the immunisation program has expanded its indications, which is great.  

And there’s other things like…the Australian Immunisation Handbook has now got a new update around the timing of vaccines. And so, it’s just another helpful resource. And what we hope with these guidelines are there’s really helpful links as well as tables, but the links just to be, I guess for people to be aware that things are dynamic. So, look at those links because things do get updated with time, particularly around vaccines and both availability and funding of those. But I guess what we hope is that this is a useful resource. We’re always keen for feedback of when there’s a next iteration of what we can do to make it even more useful. Yeah. Thanks, Julia.  

Julia Morahan: 

Fantastic. And so, I guess this is a bit of the crunch question, Jess.  

So, you went through this amazing process. You had all these incredible people working with you and providing their expert advice. Tell me if you can, in a short way, just what do you want to tell our audience about the recommendations? What’s the kind of take-home message from these guidelines?   

Jessica Shipley:

So, in total we developed 80 recommendations that cover very broad, comprehensive aspects of MS management. So just to briefly list some of those areas which Mastura and Doug have both touched on, we covered the principles of starting therapy and treatment selection for an individual, the tests recommended before starting treatment, how to monitor MS activity while on treatment, indications for switching therapy, the literature around discontinuing therapy, and then other things as well, particularly safety measures – like how to reduce the risks associated with MS treatments, MS treatment in special circumstances like pregnancy, which Mastura mentioned, general lifestyle measures, treating MS relapses and treatment of MS symptoms.  

So, we covered a lot of different things. If we had to distil that down into just the key points for our audience, one of the key recommendations is that individuals with relapsing remitting MS are started on high efficacy MS treatments early after diagnosis as soon as it’s practical and safe. And that includes particularly one of ocrelizumab, ofatumumab, natalizumab or cladribine. But the second major point is that the risks associated with these treatments can be reduced with appropriate monitoring. And Doug has mentioned quite a few things in relation to reducing the risk of infection associated with these immunotherapies. 

And also, finally, beyond medication treatments, there are a lot of other aspects of MS management, including involving allied health professionals like physiotherapists and occupational therapists and dieticians and psychologists in the care of people with MS. And also, lifestyle factors like a balanced, healthy diet, regular exercise and other things that are also really key. So, we cover many different things, but they’re probably the really key points to take away from the guidelines.  

Julia Morahan: 

Yeah, thanks Jess. Fantastic. 

So, I think we’ve talked a little bit about how clinicians should use these guidelines as a practical resource to provide safe, timely and effective management for people with MS and that we have that expert voice and then that input from a multidisciplinary team, in order to help clinicians make the best possible decisions when thinking about therapeutic management of their people living with MS in their clinics. But Mastura, from your perspective, thinking about the guidelines and the motivation, I’m really interested in why – I know you think that they are so important also for people living with MS, beyond the clinicians, the actual people living with the disease. 

Mastura Monif: 

Yes, absolutely. Because we wanted to have something that we can actually print out or email it to our patients. Because at times, some of our patients live further away from the clinic or some of our appointments are six monthly. And of course, MS continues. And it’s a partnership. At the end of the day, it’s a chronic neurological disorder. And it needs to be a partnership. And we want our patients to be informed in the treatments that they’re taking, in the safety monitoring that they’re pursuing. 

But at the end of the day, also, something that they could have in their hand, and if they’re travelling and they’re in the Northern Territory, they can still take it and say, hey, I’m on fingolimod, I haven’t had my cancer screening, can we please arrange that? So, I think our motivation was to empower our patients but also ensuring that not to induce undue anxiety, but to empower them and have this information there, but then they can come back to their clinicians and discuss it further.  

And also, like for the hospitals, we wanted to have a standardised way of, because we’re very lucky in Australia, we have lots of options for disease modifying therapies, but we wanted to make it a bit more standardised. So, if someone is new, like a new diagnosis, not necessarily treatment, but to begin with what safety screens do we need to do? Even prior to commencing treatment. 

So, I think we just add a standardisation and then allowing hospitals to then order their own practice because we can learn from each other and evolve. And as Doug mentioned earlier, this doesn’t mean this is the holy grail of MS management and MS treatment and monitoring. There’s a lot to be done and the field is evolving.  

So, we’re hoping that as the field evolves, at least on a yearly basis, to also evolve the guidelines that’s reflective of the evidence-based that is out there because the MS field is rapidly changing. But I think the motivation, the absolute core of the motivation was we wanted to have something that optimises our patient care as much as it can. But the collaborative nature of it is quite crucial because it’s not that we wanted to bring in this multidisciplinary input and that’s absolutely crucial in the management of MS. And I think in the process, it was actually quite fun to go through it.  

And you know, enjoyable. I mean, maybe we can do it again!  

Julia Morahan: 

That’s such a Mastura thing to say, right!? Yep. No, it’s a huge amount of work, but so valuable. And I think the thing that always strikes me when I speak to you Mastura is about how you put the person living with MS at the centre of everything that you do. And you want…we all want the health professionals to be really well informed, of course, but you’re so passionate about also having the person living with MS informed and able to advocate for themselves in those individual situations. So, fantastic resource for that as well. So, on that note, Darshini, I was wondering if you could share your experience using this resource.  

Darshini Ayton: 

Well, it’s very interesting because I’ve been living with MS for almost 20 years and, you know, I have had treatment switching. I’ve had all of these different elements that have been touched on by the guidelines. And I think the multidisciplinary nature and recommendations that came through was really interesting because when I was first diagnosed, I was exercising heaps, but as I got sicker, I stopped. And I remember my neurologist saying, you need to be exercising. You need to be seeing a physio. 

And I was like, it just makes me feel worse. But this guideline actually says like, you need to be doing this. Like this is part of the recommendations to keep you well. So, it’s not just the medications. It’s that holistic kind of wellbeing element. And so, you know, through my care team support, I got on the NDIS (National Disability Insurance Scheme). I see a physio twice a week. I sent my physio these guidelines. My GP has these guidelines. 

So, you know, they, they are all interested in that because they are seeing more patients with MS. And so, it’s not just me, it’s now that they can use that in the care of other people, that they are looking after as well. So, I think that’s been a really invaluable part of the process.  

Julia Morahan: 

Yeah, fantastic. And I think…so, benefit (in) two ways in terms of you distributing it out to your healthcare team, I think, but also, I think, I hope that you receive some comfort in the fact that they’re such thoroughly evidence-based guidelines as well. So just really a really beneficial piece of work in terms of being able to have the truth about the medications that we use for MS and all of the decisions and safety and interactions that go with that.  

So, Mastura, I was wondering if you have received feedback from other people living with MS who are using the resource and how you feel it’s going?   

Mastura Monif: 

Yes, so I’ve had patients who have come into clinic and highlighted certain sections of it. I’ve also had GPs who have called to say, can I have access to the second part of the guidelines? So online, both of them are now available freely for download. So, the first section and the second section. But also, we’ve had feedback from peripheral hospitals, some of the protocols and documentation in terms of their clinical guidelines. They’ve adopted it as part of their clinical guidelines.  

And in fact, here at The Alfred, we’ve actually adopted it as part of our clinical guidelines. So, it’s in our hospital system. So far, the feedback has been positive, but we are also happy to hear any feedback because at the end of the day, improvement makes things better. So, we’re happy to hear any feedback because hopefully when we do the next iteration, it would be better and safer and, you know, widely applicable.   

Julia Morahan: 

Beautiful. So, Darshini, if you were to give me one piece of advice for other people living with MS who are or may be hesitant to follow the guidelines, would you have advice for those people? 

Darshini Ayton: 

Honestly, I feel like the guidelines normalises what the reality is of caring for someone with MS and actually also, what it is to be living with MS. Why I say that, is because I’d gone through so many medications, I had this narrative that I, as a patient, had failed on treatment. Whereas in…this is actually normal. Like this is normal that you are going to be on different treatments based on your life stage, based on different circumstances. And so, reading that is actually an incredibly, I think comforting thing for people with MS to actually understand that this isn’t a disease where you necessarily have one treatment that you stay on for the rest of your life. So, I would really encourage people with MS to kind of have a look at that and just really understand this is then how your treating team are thinking about the care that they’re giving you.  

Julia Morahan: 

Fantastic. In closing, Jess, we have this wonderful resource. We’re all super excited about it. How can people in Australia and New Zealand get access to it? 

Jessica Shipley:

So, the resource is published in two parts and they’re available in the Medical Journal of Australia website and both parts are open access. So that means they’re freely available for anyone to read and download without a subscription.  

Julia Morahan: 

Fantastic. So, it’s up, it’s online and available for everybody to see, use and talk about.   

So, with that, I would like to thank our beautiful guests today, Associate Professors, Mastura Monif, Douglas Johnson, Darshini Ayton and Dr Jessica Shipley for sharing your stories, insights and expertise with us on this special episode about the new Monash University-led consensus treatment recommendations on MS management in Australia and New Zealand. For more information on anything that you have heard, please go to our show notes. 

Thank you for joining us today on The Raw Nerve. We hope this conversation has provided both knowledge and encouragement for those living with MS and their loved ones. Until next time, thank you.   

Voiceover: 

Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.