MS Research, education and plans for 2023

New year, new podcast! In this episode, we cover new research developments, education and what’s new at the MS Trust.
 
 We kick off the year by talking a little about what’s happening in the world of MS, the MS Trust and more.

We chat to Rachel Horne who is a journalist with MS. She breaks down her MS journey and how she launched ‘the Rachel Horne Prize for Women's Research in MS’.
 
 Next, our guest Helen from our MS Trust education team discusses the training we do with MS nurses and what this means for people living with MS

Episode notes:
- The MS Trust podcast: mstrust.org.uk/information-support/support-services/podcasts-ms-trust
- More about MS Specialist Nurses: mstrust.org.uk/a-z/ms-specialist-nurses
- Rachel Horne Prize for Women's Research in MS: Rachelhorneprize.com
- MS Trust Disease modifying drugs books; shop.mstrust.org.uk/publications/?type=treatments

Next episode
The next episode will be on altered sensations and MS. We’re finding out about those weird, odd, creeping, crawling, fizzing and sometimes painful feelings that you might experience.

We would love to hear from you if you have any comments or questions on the subject. We would REALLY love to know any life hacks you have for dealing with altered sensations. Send in your tips or questions (they can remain totally anonymous) on a voice note or message via WhatsApp on 07458303326. Alternatively, you can email comms@mstrust.org.uk.

Transcript

Hi I am Nick and I'm Helena and we both work at the MS trust UK charity for people affected by Ms and just as a little disclaimer we're still recording this over Zoom so apologies if it's the sound is iffy at any stage welcome to the multiple sclerosis podcast breaking it down and also a big Welcome to the New Year to 2023 we're going to kick off our year of podcast by talking a little bit about what we're hoping to happen with the podcast and in the world of all things Ms this year and I will be chatting to Rachel horn a bit later on who's a journalist with MS and who's working um and also has a sort of special interest within the world of MS research and I'll be catching up with her uh and about her sort of diagnosis story in her life with MS and the research that she has been looking at and and the research actually hoping to see more of and Rachel is also this is very exciting she has launched the Rachel horn prize for women's research in Ms and we'll be asking her about that as well and later on I'll be talking to Helen he's one of our education team members for health professionals and we're going to be talking about some of the different training that the MS trust does with with Ms nurses but first let's kick things off with some knees from the MS trust for our 2023 um the first Biggie is that for Ms awareness week this year we're hoping to work with lots of different Ms charities in the UK and to provide lots of events and um information for the MS community and it's also a special year for us because it's officially the 30th year of the MS trust so we will be having lots of special birthday events so keep a look out for some of those and different ways that you can all get involved in the 30th birthday of the MS Trust happy birthday to us very exciting and we also have some more Publications and online content planned for the year and there's obviously lots of podcasts coming out and we do our best to to sort of get them out every three weeks uh also and we try to cover all sorts of topics topics that we know that people are asking us about at the MS trust and ask the inquiry line about um but also things that we you know pick up from from the The Ether about what's what people are discussing but if there are any topics that you would like to hear us covered please they do get in touch because we would love to hear from you how about maybe dropping us an email on comms Ms trust.org.uk leave us a voice note on WhatsApp on

0745-8303326 uh we we don't actually answer any questions on WhatsApp just to bear in mind so if you have any questions you'll have to contact us via the inquiry line and that phone number is in the show notes and we'll tell you later on as well the next episode of the podcast is going to be about authored Sensations I'm very excited about this one because this is a big big topic within the MS world so these are all your weird pins and needles and all creepy crawly sometimes painful feelings like numbness and and tingling and itching and all sorts of old things that goes on yes it's going to be a good one I'm looking forward to hearing a little bit more about that as well Helena so we've got lots lots in the pipeline this year as Helena said we're looking forward to hearing from you too um but for now we'll move on to our first guest Rachel horn I'm gonna kick off this first podcast of 2023 uh with our first guest and this is somebody who I'm very excited about having on the podcast because we've been following her on well at the MS trust we've been following her for a long while and I've been following her on Twitter Twitter as well and so I'm going to introduce you to Rachel horn do you mind saying hello and telling us a little bit who you are and what you do first of all thank you very much for having me on here I'm also a big fan of yours too and you know Happy New Year and um I'll tell you a little bit about myself I was born in Canada and grew up in Canada but I've lived in the UK in London for the past 30 years and by profession I'm I'm a journalist my background was more in international news and financial journalism until I came into into you know medical covering Ms and medical uh medical and science issues and I live in London with my husband and we have two adult children and so I spend some of my time writing about Ms and you know on Twitter on the MS research blogs and also as a co-author on scientific journals also I'm in a very fortunate position through a Family Foundation in Canada to be able to give money to a number of programs most of which support MS research and treatment looking to treatment and but also some projects which support women and and girls around around the country um sorry around around the world and also I like walking um horse riding and also mud larking which um for whoever is not aware of it is when you're going on to especially in the Thames during during the the the the the covid shutdown going on to the Thames of the river and looking for objects uh which were left there hundreds of years ago I've never heard of that that sounds really interesting oh you haven't I think I'll have to come in and do that I will have to uh make a date and do that in summer maybe that'd be interesting not now and it's bit cold but no exactly understand so I believe you were diagnosed in was it 2009 yes that's right in in the Autumn of 2009 when I was 43 um I could I just um I can tell you a little bit about it if you like my own sort of diagnosis um yeah like a lot of people with MS and I don't know if this is something that you it rings a bell with you is I had a number of kind of odd symptoms in the lead-up to my diagnosis which sort of waxed and waned so I pretty much dismissed them and then in the um and then in 2009 uh I had started laughing tingling in my right hand pins and needles which over the the next week uh came down the right side of my body so by the time I showed up at my GP I couldn't walk very well I had vision problems balance uh and couldn't really able to use my right hand properly now why didn't earlier go in because I was a bit of a mess when I showed up uh to an A and E I don't know I think in the back of my mind I kept on thinking things are going to get better yeah you know putting myself into denial um my GP then sent me very quickly out for an MRI and the next week I was admitted to a hospital in in London um into into the National Hospital in Queens Square where I was started on steroids so I was there for a couple of days and I again um I it was a complete it was a complete shock to me up until then I was you know active I considered I'd eaten well um I'm looking after myself doing all the right things and also I knew very little about Ms and it certainly wasn't anybody in my family that had been affected by it so it you know it was a huge shock to me but the diagnosis then came on fairly quickly after straight on after that yeah very much I think because I had such a severe attack you couldn't really push it aside but no I did go through the the traditional you know the evoke potentials test that was carried out um uh MRI on on the brain and spine and a lumbar puncture which confirmed it and also the blood test was ruling out other uh you know other conditions so for me the diagnosis was very Swift but I think because I presented with such um you know severe symptoms you know I suppose as a journalist what was your reaction when you were diagnosed did you want to like learn everything about Ms or was it you know yes not very much and I think I'm one of those people that um and you know and that was sort of told everybody yeah but I think it was quite obvious that I was in a bit of trouble and that something had happened to me so I couldn't really hide that um yeah so I did so I did try and find out as much as possible but I think also it's worth bearing in mind and I know you uh mentioned that you were diagnosed in what was it 2007 did you say yeah there wasn't as much information available yeah you know today we're just so used to the internet and going on so there was a lot of searching and there was a lot of older information I remember being quite thrown you know life expectancy um you know you know 10 years below everybody else's and I think also drugs had only come on um and you know since what is it about 1996 so there wasn't any long-term studies about how that was how that you know how that was panning out for people so I don't know about you but I did feel very overwhelmed and and quite alone no and I even think I had one of those you know the dummies guide to Ms like an actual workbook yeah it was I know of course there was still the internet and stuff but a lot of the things were there was a lot of fishy stuff out there I have to say yes and there still is fishy stuff you know you go on there and there's a lot of you know take this and cure your Ms and reverse Ms but I do think there wasn't as many um uh yeah it was it took I think a lot more rooting around don't you to find information on Ms and there was a lot of Doom and Gloom out there too absolutely absolutely um but and I think you know there was social media sort of just about starting as well but it wasn't all the organizations like the MS trust or the MS Society they weren't really out on social media so much back in those days either so I guess you really had to go find stuff rather than now you can sort of go on any social media and just type in Ms and you you'll have all the organizations sort of being there won't you yeah and I think that's absolutely right and I also think but I was obviously older I was you know 43 and what then I just noticed that say shift Ms when they started to come on board and as you said the MS trust and the MS Society but it did seem to me and you know correct me if I'm wrong it was more before back then it was a bit more geared towards the older so the older population that had had Ms for quite a long time so I was rather hesitant to go in to say an MS you know a social and see people in say Wheelchairs and had it for a long time and I I so I think I did stay away from that kind of you know grouping meeting fellow people with Ms because I'm probably scared of joining these groups and looking into the future and thinking oh gosh that's going to be me one day no I same and I think even some Ms Nurses Back In Those Days said to me oh you probably don't want to join a group which I did kind of feel like well that's sort of up to me you know and then and I feel like now having had Emma's a few years I I I do like going to um Emma Society branches and things like that meeting people because I I think it's really valuable to meet people that have had Ms for many years but when you're newly diagnosed that could be quite scary that's absolutely and here we are kind of you know you know kind of laughing and smiling about it but I think as you said it's only when I think I uh reach sort of acceptance yeah that I love you know I think it's great to meet other people with Ms because you have an immediate connection don't you oh yeah you don't have to explain you don't have to it's just all just there and I think I found the most part everybody with Ms it's just incredibly supportive because they know what it's like to live within incurable disease which you know thankfully can be treated but um you know it's it's it can be quite a you know a solitary Journey so I think it's important to meet other people with it yeah absolutely so so from a day-to-day basis then because it's a 2009 I mean there's a few years now and you you won't put on any treatments then it's no and you know look hindsight's a wonderful thing isn't it but again I think back then and and um you know things have changed obviously not probably as much as we wanted but it was very much my neurologist it was very much a wait and see yeah let's see how you get on if you have another attack let me know um yes I wish in hindsight that I'd said I want to be put on something uh right now but they also they they're the treatments they weren't here we've got nearly what is it up to nearly 20 treatments yeah and back then there just wasn't that it was a handful um so I I wasn't on any treatments and then over time because of the relapses continued I was on capaxan uh injecting every day and then I was bumped up to uh Tech federa which as you know is an oral medication and then the last three years I've been on a crevice um yeah which seems to work for me um you know just yeah the fingers crossed so on the sort of day-to-day basis now are you are you fairly stable or or how are you feeling with symptoms and things yeah I mean as I said I do have symptoms I have um prominent double vision in left in my left eye which it's funny because you do get used to it and you do I just tend to turn my head a bit more uh and obviously wear prism glasses when I'm driving and I do have um foot drop on my left hand side left side um which so sometimes I have to wear a you know a brace if I'm going for a long distance walk um the the biggest thing for me and I don't know how you are or with it is is fatigue because and I think because it's so unpredictable and it's so uncertain you know you can wake up in the morning with huge plans for the day or um something to really look forward to and find you just don't have the energy to do it um or else you you get have loads of energy and you kind of grab it and you take advantage of it and you put yourself too far and then you suffer the next day so even after 13 years I still haven't found that balance and I think um it's just the unpredictable it's the uncertainty and also having to let people down around you on your plans that I think is quite tough it is tough because I feel sometimes I'm much better in the morning than I am in the afternoon so I quite often have to turn down sort of social stuff in the evening and then you stop people stop asking you if you want to come through things and you sort of still kind of want to be asked but you and but you still feel like oh I don't want to be the rude person that always says no as well so it's hard to find that kind of balance it is isn't it and as you said I'm much better in the in the mornings too so I tend to sort of schedule things in the morning whereas I know sort of an afternoon Meetup um yeah or or um again having to postpone or cancel invitations and you and you do miss out and it is sometimes difficult because uh you know looking at you and I right now we look perfectly fine don't we it can be hard to explain and a fatigue is such a hard thing to explain I do that that's again when you're saying about meeting other people with Ms you kind of you just almost need to share the look and it's like yes yes oh yeah exactly where it's like oh you know you and you say oh you know yeah okay I'm having to cancel again and and I think we all get it because you can sort of see the look in somebody else's eyes thinking really yeah why are you tired let's talk a little bit about um your work because um obviously you you write for the uh the Bart's blog is called something different now is it it's the MS blog um and but you've written a few pieces about about MSN and I was saying before I press record that one thing that I loved about your articles is that you you're not shying away from actually asking some difficult questions and um coming on to talking about the the price that but I I shall be quiet about that one for a second there but but you really have a a quite a focus about why women have been quite neglected in the world of Ms which is a bit crazy since most people with them as are actually women no absolutely and I think maybe it's by uh my sort of background as a journalist um that I I yeah I feel I feel I that I can ask these questions because I do think also neurology the profession itself is quite conservative um but there are um so maybe it did help that somebody who's from the outside and that was a person with Ms would ask these questions uh but it did strike me I think what happened was um I was writing for the either from a patient perspective or a person with Ms perspective on the on the MS Bart's blog or the MS blog and I was invited by Professor Gavin giovannoni at Queen Mary to attend um ektrums which we all know is the um the largest Ms annual conference in research and treatment in Ms in 2018 so when I went there I was pretty surprised um was how underrepresented women were as as neurologists and neuroscientists speaking and obviously that has changed now quite dramatically I think the the speaking ratio now is it 50 50 but back then I sort of counted and it was about two-thirds of the speakers uh taking the stand um were men and um so their voices are being heard their research was being put out there and what I also noticed was that um how very little mention was made of women with him as it was very much under patience and I think we're very much seen as kind of um generic men but with boobs and tubes to put it bluntly yeah a little mention of our specific health issues be it managing reproduction pregnancy breastfeeding and and menopause and as you said considering most people who get Ms are women and and that's growing and you know why wasn't that being you know another issue being addressed you know is it hormones is it yeah vitamin D is it you know why is this happening um and I was just also going to mention another thing it was actually through the um you know the MS Ed they do an annual um conference which is absolutely fantastic and what happened was in March of last year so March of 2022 Dr Ruth Dobson was um invited by you by the MS trust to give a lecture on Ms and menopause and she asked if I would uh contribute something from a uh and I think it's no surprise I'm you know menopause and of a certain age and while I was doing research into it I noticed that of all the thousands of papers published about Ms in the last 40 years had only been 10 on um women and the menopause in Ms and you know considering almost you know every woman with Ms will go through the metaphor it seemed as a huge short failing and also that the people writing those those studies were women because it's something they were familiar with they got um so I don't think you know I don't think it's some Grand conspiracy that you know male male scientists are trying to keep women down but they just probably don't think about these issues as much as as women do so that's um for me those were two big moments um that's why it sort of led me to set up um the you know the prize for women's Research into Ms oh and tell us a little bit about that yeah sure as I said I think um the women's issues had been overlooked and women scientists had been um and and there is and I think we're well aware there are quite strong rooted institutional biases um women neurologists and neuroscientists are paid less there are less leadership roles or less um on on on Journal editorial boards uh and I think I think change is coming but it's coming slowly so what I realized what I could do though was to set up an MS a prize for for women's researchers and so it was kind of saying here's the women researchers here's what they're doing um and and when they when they do the research then we the women with Ms benefit so um it seemed to me uh you know and also it was also a thank you to all of these women researchers um to say thank you for doing what you're doing you're facing these challenges um and and um here's you know let let's shed a light on on you and reward you I think it's a fantastic initiative and one thing I find in you know a very exciting um since sort of being diagnosed in 2007 and it's only really been saying the last five years or so four years or so that I've seen some some female neurologists and I think the first time I actually had one in an appointment I think I almost squeaked a bit and I thought maybe that was you know a bit weird for her but it was just like I just thought it was so exciting because it tends to be an older white man that you go and see and it was just nice to see and now you know having done this job and interviewing people and I've had we've spoke to roost Dobson who is brilliant and we've had quite a few female neurologists on here and and it's just it's nice to see that it's it's there's changes happening uh absolutely um and I think also that there's a lot less reticence about saying things like and again which I think this is not just in the MS world but say menopause which you almost often used to say in kind of a hush tone of voice wouldn't you yeah I'm thinking through the change um so no I I think there is a sea change out there it is happening slowly and you know obviously we want these things to happen quicker but I I think I think it is coming through yeah you know and it's interesting because you know they always make that joke saying that if if men were giving birth then there would be much more pain management to to do with the delivery of of babies but but um I do think it's kind of interesting with the amounts of drugs that we have that is very very few that have gone any sort of testing when it comes to uh breastfeeding yes absolutely um and I think that's coming through and also I when I was at ektrum's um just uh in you know then in October last October there was a study presented on about IVF and would that affect you know again these things which which um which because I uh I you know was diagnosed when I was older so it's very different from you when you were probably thinking what does this mean for somebody with Ms who wants to start a family or is it possible I mean we all know until very recently um we're moving with Ms discouraged from having children yeah so I I think I think this is just all leading in so that women with Ms who are what we know are typically diagnosed when they're 30. they um can get on with their lives and and do what what what they're and not not feel that they have to limit their lives which I think is is it's all about information isn't it and research I remember being on one of these um panels that's nice had put together when they had some people started presenting some ideas for some new drugs and things and I sort of said what about breastfeeding and it was almost like someone was going oh yeah and it was kind of why you your audience is predominantly going to be a female in her 30s so why should you not be thinking about these things but exactly you're probably thinking about starting a family or she already has a family and expanding it and also I don't think it's I don't I think it's actually quite poor science when you just focus on you know one um gender or one sex um because we are different uh you know in a very deep cellular level so it makes sense especially in the age when we're moving towards personalized medicine why not recognize these differences um and we're you know ms's is different for each person so why you know why why can't shouldn't we take into effect um how that affects us um you know the ages and and then the sex differences and uh yeah to do with reproduction treatment all those kind of issues it was interesting what you were saying when you that it took you a long time before you actually ended up going to hospital even though things had sort of been happening a bit do you think that that could also be a little bit like as women we hear quite a lot of the times that people just get on with things it's just you know just to get going and then then you hear these horrible stories about women who go to the doctor and they'll be like no no no no it's there's nothing you're just I don't know perimenopausal or it's this and this that and then it actually turns out to be something like Ms yeah I think medical gaslighting nms is a very big issue and um I've sort of been looking into it more and more but for exactly the reasons you pointed out I think women are told um you know pain is is is you know at the time of the month menstrual or childbirth or whatever the the pain we should just accept it it's just part of being a woman uh and also I think it's very difficult with Ms because so many of the symptoms are in visible you know problems with cognition or numbness or pain or um and it's very difficult to measure whereas you know an oncologist or a cancer specialist can look and do you know one test and decide whether it can dictate whether or not you have cancer or they can measure a tumor with with Ms it's it's it's because also the symptoms come and go it's very difficult and so I do think there has been quite a bit of medical gaslighting when it comes to conditions like Ms especially because it hits women and because some of the symptoms are are invisible all fingers crossed that it's it's moving into the right direction now and to bring them back to to to to your price who can nominate people then for for the price and what sort of criterias are there to nominate someone sure um is going the the nominations you have to be nominated by somebody in in the MS scientific community so we're a neurologist neuroscientist a you know researcher and anybody can um in that Community can nominate you know a man or a woman um Can nominate one of their peers uh and also I wanted to make it as simple as possible because I do know um especially if you're a woman researcher there's a lot of Demands on your time so it's essentially um to put in your application it's one page obviously citing your your journals and it will be looked at uh the judging is done by International women in Ms who work uh there'll be a panel we haven't decided quite yet but I think it's a panel of about five or seven um uh members of international women us who will change and they will look at the applications um and and and sift through them and I think we also wanted to keep it quite loose not just saying say it's it's mid to late career uh researchers you know uh I think initially will be that but then sort of switching things and saying hold on this this year we'd like to encourage um women from um say more of the developing countries uh Asia Africa to put in yeah so I think just having that flexibility so you're gonna you're gonna see a shifting so that it's kind of open to to all women not just the usual um you know North American European um Specialists yeah well that's that's really good I think you know to to sort of make it a global thing yeah yeah so when when are you are you planning on having a ceremony or what yeah so yes what we're going to do is it's my understanding that it'll be announced that the applications are opening at actrums which is at the end of February in in San Diego's applications will be open uh and then the the judging um system will you know then there'll be the judgments and the the prize will be awarded in Milan in 2023 and also they will this is very much supported by you know by actros so that's when there will be that's when the award will be given and as I think it'll be you know 40 000 U.S or how that translates to wherever the research or the equivalent and it's no strings attached so if they want to go to Las Vegas um go ahead the money they don't have to link it to research in Ms it's it's um yeah so that's uh yeah and I I guess you will be able to see an awful lot of interesting research then hopefully as well as I said I I'm no neurologist um that's pretty obvious but I think at the very end um they'll probably want somebody and which I'm going to do and and just to sit there and to hear what's important and and and yeah so as I said it's pretty much a hands-off until I think the very end and I'll yep I'll be I'll be having some impact yeah some some of some yeah some influence it's funny one of my colleagues um Janice she like writes up these uh research updates um that we put out on again and um she plows through all these like super technical things and you know some some things I can understand by the headline and I think aha but then other things you could might as well be been in in Latin or Greek I don't know it's it's so complicated but it's no I very much agree with you and I think this kind of movement which I'm sure you're aware of of the plain language summaries um which I think is great because I think it's so difficult you know and I think we share the same things I'm not from a science background and I can kind of you know some of the headlines I can get and sometimes the conclusions but I think just having making um MS research accessible so people with Ms realize that all these things are happening and what it means to them because it can be quite overwhelming can't it oh absolutely and I mean I feel like there's a lot of people within the MS community that really want to read about research as well because it does give a hope and and an interest on on things and it's also that aha well that happens to me and is there but then there's some I mean there's some funny wacky ideas out there as well but one of the most popular things that we keep on putting up on social media is that Coco could help um with fatigue and it's like because people know oh well I can actually try that myself you know it's not something that's over complicated you any kind of research that you can apply to yourself rather than having to be in a in a medical medical trial and stuff it's it's interesting yes I agree with you you know sort of do this one thing yeah but as a cocoa kind of chocolate well hold on I can do that yeah what areas have researched would you like to see start happening in the in the next year then yourself well for this year I would love I mean I think there's a lot of very exciting things going on in MS research and I'm not just saying that because you're in front of me uh but I do think uh there's been uh interesting um move movements in personalized medicine because I think and I don't know how you feel about this I think you know Ms has been a neurological success story and for the last 25 years there's so many drugs available so I think that's quite wonderful so now I think we're moving beyond that and say look we do have treatments yes you have MS and you'll probably have to be on treatments for the rest of your life but now I think you're allowed to you know there's much more bringing in uh we're moving to the next stage and personalizing being able to personalize those treatments and the use of you know artificial intelligence to be able to scan through millions of MRIs what's the best course for you um so that's one thing is personalized medicine which I think and also um very interested in um the the relationship between the Epstein-Barr virus and Ms and you know very strong evidence that it does trigger it you know how we don't know why we don't really know but being able to you know let's look at possibly N2 was a retrovirus to treat people with Ms who've already you know who already have MS um and also uh possibility of vaccines I mean we've seen what amazing things the vaccine did with the coronavirus um so you know can you imagine you know you and I having a conversation in you know in a generation and saying um it looks like Ms you know we've got this vaccine and it doesn't exist anymore I mean that to me will be incredible and you wouldn't have to worry about your children getting it or their grandchildren getting it so I think those two things and obviously also women you know again going back to um treatments that focus on you know women and you know women with Ms um and and how we can uh you know Aid and support women with Ms who to you know with the disease yeah I think one thing that's been interesting talk about menopause because not only in the MS world but like I guess it was that documentary that Davina did that there was almost like suddenly people went hang on is there such a thing as menopause which is it's so crazy because you know we're like I say 50 of the other world's population will most likely go through menopause at some points in their life um so I I think it it's it's nice to see that there is sort of research being done in there but I find personally myself I'm I'm a bit sort of perimenopausal at the moment and when there's stuff going on I never really noticed about whether it's Ms related or if it's one thing or another I've had random piece of pain and bladder problems and it's like what what's doing what and it's I find it quite hard when you go to the health professionals and they see Ms in the list there as well they'd be like well that's that's why it is I eventually got like a scan done and then they figured out that the bladder problem that I thought was Ms related was to do with uh fibroids and and cysts and things like that and it you know it's it it's hard feel to navigate I find there's a lot of stuff going on down there it is really isn't it and that's the same thing that happened I was convinced my Ms was getting worse because I would have these symptoms and as you said so many of the symptoms I don't know about 20 something you know correlate so I was thinking my Ms is going to is is getting worse I've got to go on to a you know a stronger drug um and what got me is is that I you know I was quite surprised my Ms nurses or my neurologists didn't sort of say well look let's face it you are in your late 40s this could be linked to to the you know to to menopause because I think I have a tendency probably like a lot of people to blame everything on Ms yeah because it's got such a wide range of symptoms um and I think because the nature of of menopause because it affects so many different areas um there isn't you know you have to kind of connect the dots um and and and and sometimes it can be very difficult isn't it because again there's such a wide range of reactions yeah some people seem to sort of float through women float through the menopause and other people have a really difficult time um yeah so I think that's been that you know again let's see if I know there's some very interesting work coming out of I don't know if you're familiar with Dr Riley Bove part of University of California I think um and she's been doing some fascinating work work on on women in menopause and with Ms is it getting you know will your does your Ms get worse um you know and and can we create some sort of you know biomarkers to see how you're going to do so I think the such there's a huge amount of research to be done but um at least it's being done which I think is great one thing that I've always thought would be very interesting to see more about as well as sort of hormones and pregnancy and things like that because I don't know about you but when I was I've been after diagnosis being pregnant twice and the first time um a lot of my symptoms that I was having on a daily basis sort of stopped while I was pregnant um and and I felt apart from being pregnancy tired and morning sickness and that sort of been I felt fantastic it was it was you know and that's why so I probably didn't feel like I had Ms during those uh nine months of of pregnancy um so it's sort of very interesting to know how did you feel how did you feel after because isn't that quite sometimes a quite difficult time time because obviously you've heard your you know maybe you're exhausted you're tired your hormones are crashing how did you feel afterwards well I was sort of almost expecting to have relapse then because I had had quite a lot of relapses before falling pregnant and then I was so stable during the whole time so I was almost expecting something to happen um but it didn't I didn't actually have any relapses until after my second son was born but then I got the optic neuritis and something else and that's when they put me on treatment because I was very much like you that they said oh no you you too well wait and see wait and see kind of thing and it was funny because when you then go after 10 years was it nearly 10 years nine years of having air mass they were like well you know we probably would have liked to see you started on treatment a little bit earlier well you didn't give me that option did you yeah it's very difficult I think sometimes not to look back and that's why I'm so encouraged when you you know read about um you know people who are newly died diagnosed and the first thing now the neurologists saying is we're going to get you on something strong and fast and and I know it's early days but I I I I see that as a change and I think that is just fantastic I agree and I know a lot of people worry about side effects and things like that and that's a good one of the good sides of social media is that you know people like you and me were out there people can sort of ask questions so you know if you're on this drug how did you feel and you know some people have horrible experiences on some of the drugs that other people are just like me nothing but it's it's that's peer support groups are good for that can I just chatting about absolutely and and the Very fact that there is choices so you say hold on I didn't get along very well on Tech federa well why don't you try you know you know Glenn yes there are choices rather than know there's one drug and you're on it if you don't get on with it um tough yeah yeah and I suppose that would be another thing that would be interesting to see research in other treatment because like fatigue drugs there's not much on the market on that level and we all know that fatigue is probably the EMS symptoms that everybody seems to talk a lot about no and I think you raise a really interesting point about hormones um as you said well you know why is it that women during pregnancy um feel like you did you know absolutely on top of the world that you don't have MS I think there really should be maybe more research into that is is you know how do hormones affect um is there any possibilities of remyelination um is there any possible you know I think that's a whole area that that that needs to be looked into or maybe just just looking into it a bit more um I need to find myself a researcher and we can go through your price then no I think I I think it I mean I I do know that there are some women that are have felt awful Ms wise during pregnancies and they have had relapses and things but but you do hear quite a lot of women who are feeling fine and I guess a lot of it has to do with the fact that the body's immune system kind of lowers to let you carry around this little parasite

I do love my children really

not from research then is there anything else that you're excited about in the for the new year coming up no I just I don't know about you but I just like a calm calm here I think I think the last couple of years but it's been awful for everybody very difficult but I think particularly people with Ms because we're in we're more vulnerable and I think especially those that are on you know um immunotherapies have just had to be much more careful much more cautious uh so I just want a year where I don't know about you but just quiet quiet and calm no big nasty surprises going on um and I do feel you know encouraged yes there's there's a lot going wrong in the in the world and then there's a lot of things that need to be righted you know we were just talking about in the MS Community um but I do I I do think that getting diagnosed today with Ms look it's an appalling disease and I I'm you know I'm not gonna sugarcoat that at all but I think there's a lot more options um people uh I think now are can and can ask a lot more questions there's much more I think more of um a patient patient doctor relationship that they're working together and you and and the Very fact that you can also there's Now options you can get second opinions you can change you you can look for what best suits you and I think so I think that's all very very positive things so um I would say to somebody who was getting newly diagnosed today do some research and think very very hard about getting on a drug uh say if your neurologist maybe doesn't recommend it on a stronger drug hit it hard hit it fast because it it is your life you know yeah on the flip side do what's comfortable for you um but but think very strongly about that because yes it is an incurable disease at the moment but it can be treated and um why wait and see to get some nasty um uh to get some damage um when you don't have to I think that was uh some good parting words there thank you so much for chatting to me it's been super interesting you have to tell us um up keep us up to date what's going on with the the price as well yeah and what and what research comes out of it because we're excited to see that yeah well listen thank you so much and thank you again for the MS trust and all the work you do I think it's it's so key and so important and I I just love the way you you keep track of things but yet you keep it quite personal um so you're not overwhelmed with information and and and um I just think you know especially through podcasts and things like that where you're speaking to people with MS and but also with the you know variety of experts and advisors who who um you know who can tell us more about the research and the important work they're doing so so thank you and thank you thank you so much they're very kind words okay now if this was commercial commercial podcast here's where there would be an advert about us we're a charity we don't do that so instead we like to take this opportunity to tell you all about our new Publications that we're bringing out this week actually if you've been to see your Ms team to talk about disease modifying drugs the chances are that you might have come across our book on the topic as well and we know that the nurses often give them out to patients in the clinic this year we've updated the book with lots of the latest drug information and we've also have a companion book that has a chart where you can compare some of the different disease modifying drugs in an easy way so if you'd like to see these head to shop.mstrust.org.uk and click on treatments it's all free and it can be downloaded as digital or you can also request a physical copy too and now let's move on to our other guest Helen from the health professionals team at the MS trust hi there welcome back to the MS Trust podcast multiple sclerosis breaking it down I'm Nick one of the hosts for the show and today I'm joined by a colleague from our health professionals team Helen hello Helen hi there Nick do you know Helen we've got lots of things coming up for the Year this podcast we're looking at what 2023 will bring and and I hear there's lots of uh exciting things happening on your end from the education programs could you tell us a little bit more so our education programs are designed for health professionals who specialize in supporting people living with Ms that includes nurses occupational therapists physiotherapists speech or language therapists and and many more different professions and as you say we do have an exciting year coming up we've got three courses running throughout the year for health professionals who are new enroll we have our annual conference in March that has around 300 people attending that and we're also in the process of planning an advanced course for health professionals who want to do a bit more further learning alongside the kind of the in-person events um we also have loads of resources on our website lots of Learning and Development content for health professionals wow amazing and there's a development module coming up in January is that right yes absolutely we're quite busy at the moment preparing for our first course of the year which starts on the 23rd of January we've got 26 health professionals who are fairly new to their role coming along that's a mixture of nurses occupational therapists physiotherapists and palliative care and we cover a range of topics starting right at the basics of what is Ms covering different treatment options different symptoms and how to best manage those providing lots of resources to help our health professionals support the people that they're working with yeah and I mean it's definitely one thing that I've learned since joining the trust is um all of the work that that goes on from the health professional side um and supporting people with Ms um and and giving that training to to health professionals so that um you know people with Ms get the best possible care that they can from the health professional so I think it's great to hear there's so much going on um and from kind of last year and to this year have there been any big changes for the education program I think for us um last year was very much trying to catch up with people who hadn't been able to do the training they'd wanted to do during the pandemic so we have generally been over subscribed to everything that we've been doing that's why we're running three courses for health professionals who are new in their specialism because we do have a lot of demand to catch up with so that's we've usually run two a year and we're going to be doing three a year this year but we will you know obviously continue to develop um content that's relevant to needs as well making sure that people with Ms are getting the best service possible from their health professionals and every time we run a course we're working closely with our colleagues in the MS trust so we work closely with the inquiry service to make sure we cover Hot Topics that are important for people living with Ms we work closely with the information team to make sure that all the content we're providing to health professionals is up to date and we provide packs of all our information resources to the health professionals to take away so they've got all of those to refer to and to share with the people that they're seeing in clinic it sounds like um that you know people with Ms are kind of at the heart of of what comes from this training for the health professionals yes absolutely we're we try to make all the content um patient-centric it's all about the care that the health professionals are providing we'd actually have some expert patients come along and to deliver some sessions so that people are really getting a good understanding of the different aspects of living with Ms it's so important isn't it to keep you know who we're supporting at the Forefront isn't it and so alongside some of those expert patients who else will be leading and delivering the courses the some of the courses we deliver are accredited by Birmingham University and we work with academic advisors from the University and generally we work with a range of experts from around the UK who very kindly offer their time and their knowledge to support us at the MS trust delivering different pieces of content based on their specialty so we're really lucky that we have of a really great group of neurologists specialist nurses physiotherapists who have been working in Ms for a long time and are happy to share their experience and knowledge and pass that on to the next generation of Health Professions who are starting their careers so Helen from some of the people who attend the development modules and what's next for some of those people who've had that training yep that's great that's a really relevant question for this year because we're starting to see people who have been on our development courses now coming along to train the next generation of specialist health professionals so we have a few people coming to conference to run various seminars for us who have been trained on our development module we've been running the course for many years so it's really nice to see that kind of generational experience sharing happening amazing to hear and I suppose is is there anything else that you you'd like people with Ms to know about your education programs I think it's just to let you know that the great information at the MS trust provides for people living with Ms also forms the basis of the information that we're giving in our courses to the health professionals that you see when you visit your various clinics so we do try to be very consistent in the information we provide on the different drugs therapies on the different ways to manage symptoms and we're always trying to make sure we approach each symptom in a holistic manner that we look at not just drug treatments but physiotherapy adaptations that can be done in day-to-day life just to make sure that the health professionals that we're working with really are providing the very best that they can for the people that they're looking after I think just listening to Steve there I think I can really see a a picture of the research side of things informing the training with their health professionals and then around to to people with Ms who are accessing some of those services so I can really see how how it all fits together and keeping up to date with all of these things is really important to us obviously we're updating our materials all the time but we also make sure that our education team and the experts that we're working with are regularly attending confidence is where there's new research being presented and making sure that that's then fed into the content that's in our courses a big thank you then to Helen and the rest of the health professional team who are busy behind the scenes getting everything ready for the development modules and the conferences this year thank you Helen thanks Nick for having us and just to wish everybody a happy healthy and busy 2023 and we're back lots of things happening in 2023 it looks like absolutely yeah and it was you know it's great to hear um from Helen there about the conference and some of the the programs that they have for for the nurses within the world of Ms and also great to hear from yourself Helena and Rachel about some of that research that's coming out and and the prize and that Rachel's been developing I think it's really inspiring the price actually I do think it's it's really nice to sort of see that women are being um sort of celebrated in in the field of research but also like really encouraged about it and and as Rachel mentioned you know because predominantly women have MS you know it feels like there needs to be a little bit more looked into and that obviously there's lots of men having Ms as well they're not being forgotten about but I feel like there are things like hormones and stuff that would be quite interesting to to to to definitely learn a bit more about so it'd be very interesting to see where the price goes but I'm sure Rachel will keep us up to date with that um and I think it's really interesting to hear you know things about what we're getting up to as well I know that the health professionals really value uh the sort of the education events that uh the MS trust put on for them I've been along to to the MS trust conference a few times and it's amazing to sort of listen to all the speakers and and things because you get all these you know fantastic neurologists and health professionals and Specialists that talk about all kinds of different interesting um subjects and now it is for health professionals and not for like sadly not um people who aren't in that world can't they pop along to the conference and learn but we do always try to attend and take reports from it and ask the experts some questions and then publicize that on our website and sort of spread the knowledge around as it was so people with Ms can get it as well yeah definitely and looking forward to seeing how that goes too and definitely looking forward to 2023 myself um my New Year's resolution was to try and get a little bit fitter um I was wondering um maybe some people out there might have some different New Year's resolutions maybe you might like me maybe not be uh quite as far down the roads of your New Year's resolution as as you'd like to be um but potentially maybe one that you might like to do is is volunteer um so I was wondering Helena if you could tell us a little bit about um volunteers with the MS trust yeah I think you know volunteering is such a great thing to do um Everybody people who do New Year's resolutions you know they're getting fit and eating healthy so it was always a like a firm favorite isn't it but I feel like there's been quite a lot of people have said to me that they'd like to do some volunteering and things like that this year I would do volunteer myself for my local park run and I find that like really it's lovely because you feel like you're helping the community you make meet some new friends and and get to know new people and you're doing some good doing good makes you feel good I I'm a strong believer of that um and uh you know we know that within the world of the MS trust we're always looking for for people to to help out with things and and we love our volunteers I mean we have people helping us out with the sort of the Facebook group of guest moderators and we've had people who helped us edit this podcast before and he will he actually did a few episodes as well there further down if you could click a little bit further down in our list you can listen to some of the things that he did he was a great volunteer and we you know we've had people who who help us putting together music and and do script writing and all sorts of things so so if if people have the extra time to give and they they want to sort of help a charity out then I think there's a really good way to to approach uh well I mean we would love it if you approach us I was gonna say any charity but obviously at the MS trust would love to have you yeah definitely I think um you know it's so important isn't it and as you say hilarious it's a great way to potentially learn some new skills or share some of your expertise as well so we will always would be Keen to hear from you so if you would like to get involved with volunteering with the MS Trust head T

www.mstrust.org dot UK forward slash get involved forward slash volunteering and alternatively if you head to our MS Trust website and head for the search bar and go for volunteering then the page will show you as well you can read some interesting stories about people who have already volunteered like Caroline that I mentioned who is one of the guest moderators on our Facebook group so it's some interesting stories to read there as well to inspire you to see what you could maybe maybe get up to finally if you have any questions about Ms the MS trust is is always here for you you can call our inquiry service our helpline which is um open on Mondays to Fridays from 9am to 5 P.M outside of those hours you can always leave a message and we'll get back to you as soon as we can so give our inquiry service a call on zero eight zero zero zero three two three eight three nine or you can email ask at mstrust.org dot UK and if you want to get in touch with the MS plus you can also find us on Facebook YouTube Twitter and Instagram and you can find this uh this podcast on Spotify Google and apple podcast and Amazon music and and some other places where you would normally listen to your podcast as well and you can also watch this podcast if you would want to on YouTube as well and you know like we said before please get in touch and we love it if you like And subscribe and if you Spread spread this podcast around by anyone who would uh want to listen to the podcast and and we finally we would also like to say a big thank you to Ann Chapman audio for the music to this podcast and looking forward to seeing you all and listen hearing from you all in 2023

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