Hello, you're listening to Nick and my colleague Helena.
And we both work here at the MS Trust, the charity for people affected by MS in the UK. And we are here to help you make sense of MS.
Yeah. And you're, you're listening to our podcast, multiple sclerosis, breaking it down. This will be our last podcast of the year of 2023. But don't worry, you can't get rid of us that easily. We will be back again in January 2024. And we've got lots of new and exciting topics to look at for the next year or two.
But before we get in all excited about next year, we're gonna get back, back on this episode. And we would like to end this year with an episode about what you, the MS community have been asking us here at the MS trust this year. So this will be from the MS trust helpline, who answers inquiries by our phone, email and all our social media channels, and even good old fashioned snail mail. I think we do sometimes get the old things dropped through the letterbox.
Amazing, yeah, and what is the Helpline at the MS trust? It's a free confidential helpline for anyone affected by MS that aims to equip you with the information that you need to better understand and manage your life with multiple sclerosis. We can't tell you what to do. But we can find the information to help you understand your situation and your options. This year has been really busy for the helpline. And in fact, 2023 is by far the busiest year that the helpline has had. Now look, you know, as we often say, Helena, don't we, we know that NHS waiting times are long, people are struggling to get to appointments, people are waiting a long time to see the different health care professionals that they're involved with. And we know that lots of you have been reaching out to us at the MS trust to the helpline, with some of those questions that maybe you might want to ask your healthcare professional. But unfortunately, due to the current situation, it's been difficult to do so.
And we also noticed that we've had an awful lot of people following us on social media. And please, if you're out there, and you're not already following us to come and find us, we post daily about MS symptoms and how to deal with them, personal stories from people affected by MS and expert advice. And you like this podcast, and and we have a very active Facebook group as well, where the helpline also answers questions in. And we'll put links to all of these things in the show notes.
So, as these questions come into our helpline, whether that's on the phone, via email from traditional mail, or social media, and their helpline team do gather stats for their analysis, so they can see sort of what people are asking about each month. So that helps us in a number of ways. So that helps us to create content on our website on social media, to sort of direct people to that information. If we know that, for example, one month, lots of people have been asking about MRI scans, we might point them to our MRI pages online. And it also helps us just kind of keep track of those trends. And those topics that we see frequently coming up again and again. So we can see actually, the MS community is is really wanting to know more about you know, for example, something like pain in a particular time of year. So what we're going to do today is we're going to talk to Corinne from the helpline team, and she's going to talk to us about the 10 most asked about topics from the MS community.
Great looking forward to this, it will be very interesting to hear. So without any further ado, let's listen to what Corinne and Nick spoke about.
Hey there, welcome back. We're joined now by Corinne from our helpline team at the MS trust Hi, Corinne.
Hi, Nick. How are you?
Okay, yeah, yeah, I'm okay. I'm all okay. What about yourself?
Yeah. All, good. Yeah, happy to be here today. Yep.
Thanks so much for joining us today. Today we're going to kind of look at what people have been calling you about, yourself in the team throughout the year. What are some of the kind of the, the most common topics? What are people wanting to know? And you know, what kind of sort of information you might have been giving them as well. So if people are listening to this and thinking actually are wanting to know a little bit more about fatigue, for example, as the symptom. They might be able to go away have some useful information too, from this one.
Yeah, of course.
Amazing, yeah, brilliant. So I think it's so we had some notes didn't we Corrine, and they can see what's what was first up. So you can see lots of people have been calling sort of asking yourself, look, I've got these symptoms. Are they MS? Is that? Would you say that's a common one that you get?
Yeah, yeah, it is. It's, it's one of those things that I think we all know our own bodies. And we know when something's not right. So when something's happening, obviously, it's concerning. And you're thinking, well, this isn't right. And that whole issue of what's causing it really, what's the root cause of actually causing this? And what can be a little bit tricky about MS is it's not, it's not diagnosed by a blood test. So, you know, it's got to be every area has to be looked at. What people might find is when they originally first go up, first off, go to their GP, the GP might take some blood for testing. Now, the reason they might do that is to rule out other symptoms. Okay. rule out other issues, other health conditions, vitamin deficiencies, for example. Sometimes it might even be diabetes, or other issues, low vitamin D, anaemia, and if you're anaemic, that can all contribute to fatigue as well. So yeah, so we hear it a lot about what's causing the symptoms, what's going on, you know, why have, Why is this happening? And on our website, there's a page that we use a lot called ‘Worried I have MS’. So we always recommend to people to have a little read through that. And often that's where they found our number, because they read through that page. And they thought, okay, yeah, this is what's going on. I need to look at this. And you know, when this, or they've read it through and thought, Yes, I'm experiencing a lot of these things. What can I do? So? Yeah, that's, that's what we start off with Nick, really hearing at the inquiry service at all that on our helpline
Yeah, yes. It's really difficult one these days. Yeah, it's not easy, an easy thing to diagnose. And then also, there's so many other things that need to be ruled out as well. And not an easy, not an easy thing out there. To kind of, you know, help someone in that situation.
Yeah, yeah it can be really difficult. Yeah, I think, I think if you're in any doubt, keep a little running symptom diary of everything that you have happening. And I think, try to avoid googling too much. I know we all do it, we start typing in things to Mr. Google you know, no ad there but, you know, Googling things in exactly. And it brings back, brings up all sorts of stories and concern for people. So keep a little running symptom diary, either on your phone or a written recorded diary. When things are happening, how long for and what sort of things happening. And and it could be anything, and I'm sure we're going to touch on that, Nick. But things like tingling sensations, weird sensations in the skin. You know, there's a lot of different MS symptoms. So, you know, it needs to be noted down and discussed with your GP.
Yeah, that's, that's really good strategies, and they're having that diary. I've heard you suggest that one quite a lot. On the helpline. Yeah. Yeah. Amazing, next up, So yeah, there's probably not a shock for anyone. But the next thing that people have been asking about is, is pain. And we know that, that pain is such a huge and broad topic, isn't it? Because it could be by symptoms, by link to things that medication could be, you know, neuropathic pain. Yeah. What, what kinds of things have people been getting in contact with you about?
Yeah, absolutely. And I think also, just to clarify, pain can be a tricky one, because it's not, it's not always an ouch pain where you get pinched or hurt. It's any kind of form of pain, what we often call neuropathic pain. And it might be tingling, numbness, stabbing sensations, electric shocks, pins and needles. Yep. And people start experiencing that, like you said, they might start feeling it in their hand or their foot. And it's obviously, it's worrying, because you're thinking, where's this come from? What is it, what's going on? And quite rightly, like you said, it's, you know, it, they're very common symptoms for people with MS and it's a very big area. So we have a pain management page on our website. And we'd sort of suggest to people to try and explain the type of pain to their GP, to explain what they're experiencing. But there are medications that the GP might offer them, especially when you have an MS diagnosis because a lot of the drugs are prescription only. So, but what I would say it's with the, with the pain medications, they work best with other techniques as well. So, for example, we suggest to people using heat packs and ice packs. Now, when we have that very hot summer, it's not always ideal to put a hot, hot water bottle on you. I'm not saying that. But it could be literally a hot water bottle, it could be a pack of peas wrapped in a tea towel, to sort of relieve the sensations from hot to cold, hot to cold, gentle stretching can sometimes help. Many people find that they really enjoy it and find it helps them, yoga or pilates, or swimming. Of course, it does depend because some people might not be as mobile with their MS. So because it affects people differently. So I think it's more about being aware of what you can do to help it, because it's often managed with by medication, but as well as helping trying other things as well. So yea, we hear from anybody really, in general with oh, it could be any any kind of numbness, is a tricky one, because you might not be able to feel properly to walk. So for example, we do hear from people where they find it easier to walk barefoot. Because that sensation of being able to feel the ground better, can help. Not always easy when you're out and about. So you know if there's a particular shoe that you like that can help with the easing the numbness that might help, but definitely, you know, at home, not using, walking barefoot can help. Yeah, so and also to maybe to contact an occupational therapist, because they can often help with things to help with, you know, for example, if numbness is affecting your hand, there's equipment that can help so that you can carry a hot drink, you know, when something's numb, it's very difficult to be able to feel properly. So it can be very difficult. So yeah, so we hear all the time about pain. And obviously, the other kind of pain, is musculoskeletal pain, where it affects, that could be affected by posture. So we've got a very good section on our website that talks all about posture, and good posture when you're sleeping, when you're sitting. As I sit up! When you, when you're sitting, effect when you're sleeping, when you're sitting, posture can really help with musculoskeletal pain, because sometimes that can be triggered if you're if your posture is not quite right as well. And also just to add with pain, usually paracetamol or nurofen won't really help. Sometimes paracetamol can help people but I would say with nerve pain, neuropathic pain, it's, it's other treatments that you need to look into with your doctor or MS nurse that can help rather than an anti-inflammatory, because that won't really usually help with it. Okay.
Wow. So, such a lot of very good information there Corinne. And when you started talking about posture as well..
Wow, yeah. As you say, such, such a huge topic, broad topic and so many different causes and treatments. So, yeah, it's, yeah, a huge area. Another thing people have been calling about is that time where either someone's going through the diagnosis period. Or someone's kind of leading up to that. So they've maybe had an MRI scan, they're waiting for results. Yeah. What, what kind of things do people call about in regards to that?
Yeah, that's, that's a really tricky one. And I think a lot of people contact us on the helpline in more about anxiety and feeling a bit, what people can describe as being in ‘limbo land’, because you haven't yet got the official diagnosis, but you might still have symptoms carrying on. So you know, what I would suggest in that incidence is to keep contacting your GP, to see if there's anything that they can prescribe to help you with, with what's what you're experiencing. Because, you know, it's best not to suffer in silence, they can often prescribe medications to help. Also, yet, like we've said before, just to keep writing down a diary of everything that's going on. But, but it can feel a bit ‘limbo land’, because you don't, for example, with the referral to an MS nurse that usually comes once you've got a diagnosis, so it can feel a bit. People call us and they're, they're a little bit concerned, they're a little bit stressed, they're a bit anxious, as well. And, you know, also mental health support, you know, the mental health side of things, it's that worry all those big emotions that you're experiencing. It's worrying, you know, it's, it can be a very worrying time and, and feel like they're just not supported. But, you know, we just tried to advise them that we were here on the helpline, we were happy to talk about any, any issues, any worries. And talk about any questions they got. So, you know, we do get contacted, even sometimes people contact us when they're facing a diagnosis very soon, they kind of know, that that they might be expecting it that week. And you know, when there's big emotions there that there can be, it's perfectly normal was what I'd say.
Yeah, yeah. I think, you know, going through that, that processing must be and you know, I'm not speaking from experience here. So I can only really imagine the level of as you say, the worry the, the uncertainness, the unpredictable nature of what might come next and yeah, yeah. And you're waiting for that, that call. And actually, it's, it's quite easy, I imagine to get into one of those situations where you're overthinking and you're Googling everything, and you're thinking about every single outcome in so much detail that, that yeah, that can sometimes, you know, lead to more worry.
Can very easily. That's, that's so true. Yeah.
Yeah, absolutely. Yeah, yeah. Next up Corinne. So, equipment. You've already mentioned a little bit about recruitment, which I was really interested in when you said the equipment's, to help you hold a hot drink. Yeah, that's really interesting.
Yeah, of course, yeah, I think it's worth it. Yeah, Nick, I think it's worth people just sort of being aware that there are, there are options and sources of information out there, which we're more than happy to signpost them to. For example, everyday things that are holding a hot drink, or drinks, cups with special straw in, all sorts of things. There's sources of information such as disabled living, that can help either provide an OT assessment, or you can give them a call and say what you're looking for. There are all kinds of sources of information to help with IT equipment as well. So for example, if you're, if you're struggling to type, or there's different programmes that can help. Also another organisation that we can, you know, we can suggest that we that we are aware of, I don't know whether I should be plugging anybody, you know, not not sort of the same things, but there's sources of information out there that can help, so that you can carry on being able to go on your PC, or have things read to you all sorts of things. Yep. Yep. And OT is a good place to start to get, have an assessment by an OT. Okay, that's a really good place to start. But other sources of equipment, we can, you know, certainly give some guidance, too. If you give us a call on our helpline, yeah.
Yeah, and I guess when when, you know, when you mentioned equipment, my mind, and I don't know, if other people do this as well just kind of immediately go to those, you know, very, sort of larger mobility aids, ya know, rather than some, you know, some of those things that you were talking about the, you know, drinking. Yeah, yeah, cutlery, that kind of thing. Yeah, there must be so many different resources out.
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There's equipment to help, in the can openers, different things, and gadgets and things that can help around the house. And of course, of course, you've got, you know, you've got your OT assessment where they can suggest the grab rails in certain places around your home. Like you say, you automatically think of the bigger devices like rollators, trekking poles, walking sticks, canes, that kind of thing. But there are all smaller things that can make life a little bit easier. Because I think sometimes I tried to say to people with it, when I speak to people with MS to not give up, but to try and think of a different way around it. It's about trying to have a different mindset and thought process to think well, what how can I do this? And that there are devices that can help without a doubt. Yeah,
Yeah, and I guess it is that thing isn't it? You know, not suffering in silence of actually thinking actually, this, this is something I'm finding quite tricky this thing around the house, whether it's opening the can, or, or you know, get into it, whatever it is, actually, that there might be something out there that's going to alleviate that. And just lift that worry as well. So, yeah, yeah, amazing. So Corinne, also people. We've talked a little bit and I think you, you, you mentioned a little bit there about sort of numbness and different sensations, but often people are calling about what we would call altered sensations. Yeah, you know, these things that, the tingling, the burning, that kind of water dripping down you, those kind of sensations. And what have people been asking about?
Yeah, I think it's tricky. Because obviously, for example, if you, you get a really burning sensation down your leg or something, you know, it's gotta come from somewhere and you're it, can be very worrying. People can call us and say, you know, they're really concerned this is where's this come from? Particularly numbness creeping over the body that, you know, it's really frightening. Some people, you know, we advise, when we hear from people that they, they might possibly go to a&e to get checked out, if they're concerned. Because there is that risk of, you know, strokes that can, some sensations or certainly not having feeling in things, it can feel frightening. So, you know, don't like, we were saying, don't suffer in silence. You know, even if it's just to get checked out. Another particular nerve pain sensation that we hear a lot about is the MS hug. With that, we've had that quite a bit recently. It's a sort of tight banding, girdling sensation around the middle, and it can be in the intercostal muscles. So it can feel quite scary to be experiencing. And some people think, oh, gosh, you know, could be having a heart attack here. So again, don't suffer in silence. If you're really concerned, take yourself to a&e. Try to get to a&e and just get checked out just to check. But it can be any of those sensations and they're, they're frightening. It's what's going on here? It can be a sign of MS whereby the bodies, the messages are getting rerouted around the body. So for example, itching is a really difficult one, because some people might be experiencing a really bad itching sensation on their arm. And we hear that a lot, or their leg. But there's no gnat bite. There's no physical sign of a bite. But it can feel like crawling or itching on the body. Sometimes topical gels can help and creams but other times it has to be alleviated by possibly, by a medication. So you know, that's something to, to look into. And to keep inquiring about to say that you know, if it's causing you problems, especially if it's causing you trouble with sleeping. So yeah, it, it can be really frustrating for people. But there is a whole range of different sensations and what quite often people will Google and, and our page will pop up because it's all those sort of things that we found that MS, it can happen in MS. Yeah.
Yeah, yeah, absolutely. I'm sure she won't mind me telling this story. But my, my wife who lives with MS. I remember the first time she had MS hug. And it was as you were saying, is really really distressing. Because, because it's that pain in the chest, or it just, really tight. Yeah, just below the chest. And so you obviously, immediately you think this this, you know, something that's really, really serious. And you think oh my goodness, yes. Yeah, it was, it was really, really distressing. So yeah, it's difficult one.
It is, it is yeah. And also, probably what she found as well, it can sometimes come and go. It doesn't, as quick as it started, it might stop. So it's see, these sensations can be quite fleeting. Other times they can last for long periods. So it's about finding ways to help manage it. And you know, not get too distracted. If you're really concerned. That's the right, get checked. Because it can really feel painful in the chest area. Yeah. Yeah.
Yeah. Yeah. Next up, Corinne. In the top 10. Yeah, we've been. We've been calling about MRI scans. Yeah. I know, certainly, whenever we put anything up on our social media, there's lots of people who, who will engage with that. And they will say yes or no. Either they would, you know, they might struggle with the noise. They might struggle with the claustrophobia. You have some people who say that they get in there and go for a kip, you know, in different reactions to what do people ask about?
Yeah, yeah, good point. I mean, to be honest, we do see also through our inquiry service, I would just say, as well as the helpline through the phone, we also have the ability, the option to email to us. So we get emails in sometimes people will email their MRI results. They might send pictures in or they might want to, terms actually explained, because the terminology can be quite difficult. So what we often suggest to people, we're not a medical service, okay, so we can't translate jargon, or the terms but we can certainly suggest things. And we can also what we often suggest is to go back to the neurologist and ask them to explain, if you're, if you're too stuck, you know, if this, this things that are really worrying you. Cos some of the words can be quite long, when they're talking all about what's going on, you know, it's a huge area and you know, not, not just not to worry too much, the actual, at the actual motion of having an MRI, it's not painful, it's just quite off putting, the noise is quite loud. So sometimes people we do hear from people where they're a little bit claustrophobic they can be, they're concerned, they're gonna feel a little bit trapped in, but it doesn't usually take too long. And it's best to sort of just try to be as relaxed as you can. And yeah, and then people are often concerned when they're going to hear back about the MRI as well. That can be a concern, because, because there are some wait times on the NHS, as we all know. So we do hear that quite a bit about the worry of not knowing what's happening. And as I said, they're not painful when they're there to check on your MS activity. They're there to check on any signs of lesions. That's what they're looking for. Either on the brain or the spinal cord. Okay.
Yeah thanks so much Corinne.
And it's all it's a part Nick, it's all part of the diagnostic process as well. And when people are first diagnosed, it’s one of the tests that's run. And also it's, they're often taken during the, to see you're on a person's course of their MS if they've got more lesions happening, whether their MS has become more active. So it's a useful tool for neurologists to be able to work out what's going on, how active their MS is. Yep. And whether they have lesions or not in the very early stages.
Yeah, yeah, absolutely. And then, another thing, we kind of talked about this a little bit earlier, you've mentioned it a few times Corinne, but also another very popular thing that people have been wanting to know more about, is fatigue. Fatigue management. Yeah, how they can best live with fatigue and reduce fatigue. So wonder if you had any knowledge on that one?
Yeah, yeah, no problem. Yeah, fatigue is a really difficult one. It's a huge area. And obviously, it affects all of us, in our in the whole of our everyday life. You know, it can affect people with MS at work. It can affect people, if they're trying to do a few daily tasks, like a little bit of housework, or getting their shopping. We try to suggest to people that, there isn't a magic pill to help with fatigue, there's not just one thing that's going to cure it, what we try to suggest to people is about looking into management technique, like you said. Now, there's some really good suggestions on our website, on our fatigue page, we suggest trying to do things when you've got the most energy, okay. So if you know, for example, the morning is more, you’re more productive. Try to do your, as much as you can in the morning. And be gentle on yourself in the afternoon. But also not to beat yourself up, if you can't get everything done. It's a busy time of year, we're coming up to Christmas. And people have lots of things going out they’re visiting family, friends, parties, they're enjoying themselves, you know, but, but that might, that one party might knock you out for a few days afterwards. Let's be realistic. So I think it's just about trying to listen to your body and manage things, the best you can, when you've got the most energy. There's some great resources on our website, I have to say and, and also the MS Society run a, fatigue online management course as well. So, you know, have a look at that, do tap into your MS nurse as well, because they've got their own experiences as well, to be able to give you some options of what to do. But yeah, we advise people, when we get through inquiries, we really advise people just to be realistic about what you can achieve. You know, and be honest with your employer, if it's causing you troubles at work, which is I know, one of the topics we're going to talk about, you know, be honest and say that it's really affected my work, you know, and just try to let them be a bit more mindful of how it affects you. Because,it's a difficult one fatigue, and it's, it's an overwhelming sense of tiredness that, you know, can be very difficult to deal with. Yeah.
Yeah, I'm sure lots of people listening to this will really kind of identify that example you gave, of the party and actually the knock on effects of that has and actually the lead up to all of these things. And then actually recovering and managing that and managing as well as much of it is managing other people's expectations, as well.
That’s a really good point. Yeah. Yeah. Because if you just have to say, look, I've got to go and sit down or I need to rest. People have to listen to that, family members. Absolutely. Really important. Yeah.
Yeah. And it's that thing isn't ,it's not that you know. You're not wanting to duck out, it’s that actually you're listening to your body and actually going to the point of the day where this is something you need to do for your health. It’s difficult to think about it in those terms.
And difficult because it's an invisible symptom, people can't see, visibly unless your your, your mobilities can worsen, when you're really fatigued. But it, normally it's invisible so nobody knows what you might be experiencing. And we hear that a lot on the inquiry line that, you know, they, fatigue can be a really big one to struggle with. And yeah, managing your expectations. Really, really good point, Nick. Yeah. I'm sure you hear as well in the group. Yeah.
Absolutely. And actually, you know, if you if you just think about it, in terms of, you know, like health, you know, you wouldn't say to someone, you know, if someone had to had to go and have, you know, an inhaler, or something for their asthma. Oh what you doing that for? You know, you just, you know, it's just yeah, it's it's yeah, as you say, it's because it's, it's more of a hidden symptom, isn't it? That yeah, so it's about other people understanding? Yes. That's Yes. Isn't it? So? Yeah, yeah. Yeah, absolutely. And you mentioned Corinne, at work. So you did talk about the employer a little bit. So people also, do contact us regularly. Through the helpline on the emails, struggles with work worries about working employment. What, what are people kind of, what what are those worries? What do they look like?
Yeah I think, again, mainly because we often signpost to it a lot, our working life page, it can be found on the website, either under W for work, or by typing in the little box in the top hand corner, working line. And the reason I suggest that is because there's lots of other organisations that can help support you, for example, if you're battling with work with an employer that's questioning your sick leave, or, you know, I have heard from people where they're using up their sick leave, to go for, go for appointments. They're using up their sick leave to go in for an infusion. You know, that, sorry, they're taken up, they're totally got that wrong, that they're using their annual leave to do these things. When actually, you know, it's, you're entitled to be able to go and have an appointment that you need medical care for. So there's organisations out there, ACAS can give advice on sick pay. You know, and as we talked about fatigue as well, fatigue can affect work quite heavily as well. So organisations like ACAS can talk about sick pay, your your rights. Now, when you're diagnosed with MS, MS is a recognisable condition. So it's actually classed as a disability, which, you know, people don't always like the sound of that, and a lot of the symptoms are invisible. You know, you might not physically have a stick or be in a wheelchair. But you are classed as disabled. So you are covered by the Equality Act. Okay, from point of diagnosis. So your employer is required to make reasonable adjustments, what we call reasonable adjustments. And we hear that a lot on the helpline, big organisations, small companies, no matter where you work, you are, you have to protect yourself and look after yourself. Now, this can be difficult, because we do hear from people that are self-employed quite a bit. Right. So and that can be difficult because if you don't work, you don't get paid. You know?. So it's about trying to make those reasonable adjustments. You know, if you're at a desk, a good solid chair, in the heat, a nice fan at your table to help cool you down. Really simple one that we suggest to people a lot and they say, yeah, actually, I'm terrible for that. Not working through your lunch break, having a proper lunch break, eating food, keeping up your energy, making sure you drink plenty of fluids as well, if you need to, because that fluids can help dehydration, can add to fatigue as well. It might be things like allowing you to have a parking space, so that you can park a little bit closer, so that you don't have as far to walk into your office or working from home a bit more. Or allowing to travel at non really busy peak times, when you're shoved. I remember commuting packed on a busy tube, it was a nightmare. So those kinds of things. It's about making your employer making reasonable adjustments, okay? And not to be afraid to look into them to ask about them. Have a look at our page and give us a call if you've got any concerns. Okay.
Yeah, I wonder if people kind of listening to this as well, ,and some people have been in some of those situations I actually just having the validation of, you know, spoken to the MS trust who are specialists in this area. And actually they've, they were talking about reasonable adjustments and actually I that some of these I need to access some of these at my workplace? To be your employer having that conversation and yeah, having that kind of backup. You know that, that there are these, these resources. This can help.
Yeah. And it's that equality act from point of diagnosis, you're covered by the Act. So they are required by law to make these adjustments for you, no matter what they are. You know, I think it's been coming up a bit more on the helpline where people want to reduce their hours, but actually, when you're in a very busy office environment, it's very hard to reduce them. Yeah. And then, and they're worried to be honest, Nick, they're worried about reducing them, and about having more work to do in the time that they do work. But I think it's a two way conversation, just got to keep talking to your employer, line manager, or, you know, being as honest as you can and saying how, because ultimately, you want to be productive when you are working. And if you know that you're not so productive in the afternoon, or there's times when your worst by symptom, you know, it's, it's worth them knowing that, and then they'll get the best out of you. And it will give you the confidence to stay in work as well, which a lot of the time people want to stay in work.
Yeah, absolutely. I think, you know, I think definitely, things have changed a lot. I have, in terms of employment and accessibility for more people, but I still do, I mean, I'm not an expert in this area. Alright. So just say that now, I feel like there's this there is such a huge, huge way to go, isn't there? You know, just look at how many workplaces that are not accessible, for example, for so many people.
Exactly, accessibility is a big issue, like you say. Because, you know, you might need access to be able to, as well as access in a wheelchair to be able to, you know, actually be able to go to different floors. And if that lifts not wide enough, or if the doorways, this can be all kinds of restrictions, not not restrictions, but all kinds of kinds of, difficulties that people meet. Yeah. And they shouldn't have to know you, right.
Yeah and before you even started your workday, you have to go through all of these challenges. Or, you know, not having the reasonable adjustments, not having the, the right, you know, the right kind of equipment, not having not having the right schedule, actually, as you said, Corinne, it's gonna benefit. Not only the person living with MS, also the employer, as well, long term, so but, it's so this such a minefield, especially at the moment with, you know, rising cost of living and people are more worried about staying in work and being able to support themselves and their families. Yeah.
Yeah, it's very, very difficult. It is. Yeah. But, but also, and we, you just touched on that Nick, as well about the idea and well of benefits as well, because there are benefits that people with MS may be eligible for. So you know, don't be afraid to give us a call and we can advise on. I wouldn't say, we're not benefit experts. So our we have information on our website about the bit different benefits, and we would definitely signpost to resources to look into which benefits you might qualify for. We hear that a lot. And we, on the group and about, and there are benefits that people can claim, that when even when they're working. So you know, that's it's good to raise that, especially in the difficult times that we're living in, it can be difficult. Yeah.
Absolutely. Absolutely. Well, Corinne, thank you so much, it's been really interesting kind of hearing you and I guess we're hearing from you, we're hearing from the MS. community, we're hearing about things that, that people are wanting to know about people, people, things that people are worrying about. And, and actually, you know, you're talking to those people on the frontline, and you're getting those, those queries in. So, yeah, it's been really interesting. I hope it's also been helpful for lots of people listening as well. To actually, you know, actually I had that, you know, I want to find out more about working, and benefits, resources to do that. So, thank you.
That's okay. You're more than welcome. And if you've got any queries, what, you know, we'll, we'll be more than happy to have a chat. We, you know, we won’t. Sure it's been mentioned at the beginning that we, we're, we're here for people living with MS. And we can't avoid, we're not medically trained, but we can certainly talk about things. And we talked to lots of people with MS. Absolutely. And family members, friends, family colleagues, as well. Yep.
Brilliant. Thank you so much Corinne, and yeah, we'll see you soon.
Now, if this was a commercial podcast here is where there would be an advert but as you know, we are a charity so we don't do that. So instead. We'd like to take this opportunity to tell you all about our fantastic resources for people with MS.
Our website. So a great place to start. So that's MStrust.org.uk. And on there, you're going to find lots of information and resources for anyone affected by MS. On there, you can find the A to Z of MS. So that's all kinds of different terminology. So things like symptoms, treatments, other MS related subjects, you can go there and you can search for those specific terms, you can find out more there. If you can't find what you're looking for, you can always give our helpline a call or an email, you can call them on 08000323839. And that's between Monday to Friday, apart from obviously, UK bank holidays between the hours of 9am to 5pm. Of course you can drop us a message and you know, we'll get back to you as soon as we can. If you don't want to use the phone, that's completely fine. Drop us an email on ask@MStrust.org.uk. And someone will get back to you shortly.
Welcome back. Thank you so much, Nick and Corinne, that was interesting to hear I love talking to Corinne. She's such a lovely and warm person when it comes to answering questions. And I think, and I've been in that situation when I was newly diagnosed. And I talked to her, I think that would have calmed me down quite a bit as well. I think I mean, obviously they don't just do the telephone conversations and things but also answer things on, on, you know, Facebook and all the other social media. And we found some interesting stats there, that since we've been on Facebook that they've replied to over 10,000 inquiries on there, this massive amount of work they’ve been doing. I think it's yeah, they're, they're amazing. They're amazing part of the MS Trust, very proud and privileged to be working with them. And we have a new guest, you might have seen it over, and you might have heard if you're just listening to it as well. And if you're a longtime listener, or viewer of breaking it down, you might recognise her, it's Dr. Claire Winchester, who is our head of Information and Engagement here at the MS Trust.
Hello, it's lovely to be here again.
Now, Claire, we've had a super busy year. And there's lots of things that's been happening, and not only in the world of MS with treatment and such, but technology has moved on quite a bit as well. And I don't know about you, but if, for me, it definitely feels like 2023 was the year where we started talking an awful lot about AI, sometimes in a bit of scary fashion. And other times how it actually might be useful for people with MS. What do you think? What do you think?
I think it is really exciting, I can understand why people will be concerned, I think there's lots of benefits to be had from AI technology in healthcare generally. But as with all things, I think we have to be really careful to manage the process and make sure we're not losing some really essential human aspects. So I think one of the places where people might see AI making a difference to their health care, would be around radiography and around using computers. AI to read things like MRI scans. And some evidence suggests that they can be more accurate than human radiographers. But I think they'll, there will still currently be a human looking at your scan, whether or not an AI cast, you know, cast their eye over it first. But I think when it comes to that kind of pattern recognition, record looking for really complicated, complex patterns in, in in big datasets, then that's where computers can really have the edge on a human. The human will get there in the end, but the computer can do it so much faster. And that will really help with in terms of getting your scan results back fast. And I think a lot of people would recognise that. I don't think we're yet at the point though, where AI can replace a human doctor or nurse in terms of giving a really personal and holistic care experience. So, so I think one thing that will, we've probably many of us have had a go at sort of tapping in a few questions into one of the online AI packages, to see what kind of response they come back with. And sometimes they can be very plausible, and they can feel really, like they're giving you a sensible answer. And I think it's still a bit tricky, though, to notice when you're getting something that sounds plausible, but it's actually full of, you know, logical holes and it's completely wrong information.
Yeah. And as we have been talking about questions today, we thought we would actually do a little experiment here. So You know, there's lots of different types of AIs and things out there. I mean, there's Chat GPT, there's Bard, there's that, that means that there seems to be a new one popping up all the time. And so if people with MS, they might be wanting to use these things, and like Claire said, there might be some, some things to think about here. So let's, let's do a test, shall we? Shall we see how it goes? So we..
Yeah, yeah, let's do that. So I've got a just an ordinary browser, AI chat, open. And I've tapped in on what is the best treatment in MS. To see what the AI comes up with and what it's doing. Of course, it is just searching the internet for it. And it's looking on other web pages all over the world to find out what, what information that would be. And what they're coming back with. It takes a few seconds, but they're coming back with the best treatment for multiple sclerosis depends on the individual symptoms, the type of MS and the stages of the disease. Can't argue with that. That seems fine. There's currently no cure for MS. But there are treatments that can help control the condition and ease some of the symptoms again, yep, that's absolutely what we would argue as well and advise. Then here are some of the treatment options. Now this is where it gets a bit weird because it's gone. Medications for MS are corticosteroids, well, those are things like methylprednisolone steroids that you might take when you have a relapse, perhaps, so you, that’s reasonable. Interferon beta blockers like Copaxone and teriflunomide could slow down the disease progression. Well, that sounds like gobbledygook to me. Interferon beta, absolutely. Some of the MS DMDs are based around our versions of interferon beta, which is a chemical that reduces inflammation in your body. But a beta blocker is something else again. And I don't think Copaxone and teriflunomide are related to the interferon betas. So I think that's a bit of garbage. And I don't think that would be a safe piece of advice to follow.
Would you recommend someone who's looking into their medication for MS, to take that advice?
I really don't think that this is the right place to look for medication advice, there's far too much else involved in terms of, your prescribing doctor will need to know what other treatments you're taking. Need to know about your other things about your health, lifestyle, wellbeing, age. Whether you're planning a family, things like that, I mean, these are all things that they have to take into consideration when they decide what to prescribe. So just kind of going, on going online and asking, asking an AI bots doesn't sound like a good idea. The therapies that they suggest, while they're you know, we call physical therapy, occupational therapy, speech and physical therapy. So it's a bit repetitive. And it makes them quite weird. So it says here that speech therapy is just training to improve speaking well, we know that speech and language therapy is much more than that. And it can be for things like swallowing and breath control and getting a strong voice and things like that. It's so much more than that. So it's quite limited. So here's another thing. Let's talk about something more about MS and lifestyle. And how about, should I tell my boss about my MS? Okay, that sounds like that. So I put that in. And it's told me that what it's searching for is should I tell my employer about my MS? That's quite clever, it's worked out that boss means employer is looking for that. But unfortunately, what is listed here is listed the pros of disclosing MS. And it's talking about getting protection under laws, which don't, which don't apply to the UK, is talking about, is defaulting to an American legal position. So that's always something to bear in mind, the response you're getting might not be appropriate for where you live in the world. One thing they do do on this particular engine, but they might not do everywhere, if they have little. They have little footnotes, to tell you where they've, where they've got that information for. So you can go and follow up the webpage where that came from. And you can, so you can do a little bit more research on. So some of these are from Yeah, they're very definitely from US websites. Some of them are referencing our website. So they've got, they've definitely, they've referenced the working life page on the MS Trust website, when they're talking about workplace accommodations. So that's nice. It's kind of nice. So we probably want to say again, okay, let's let's, it's all in the question when you're using it. So let's be a little bit more specific. Say I'm in the UK. What legal protections do I have at work if I have MS? Be a bit more specific, so being a bit more specific can really help with this. And the response we get back is quite reasonable. It talks about the Equality Act 2010, which classes MS as a disability from the point of diagnosis, and it lists off some very reasonable things. And it talks about the Disability Law service provided by the MS Society, which is all great. And it links to the MS society's webpage and the government webpage. So that's quite handy. What else can we put a question in for? I think, how about about symptoms? Or medicines? You know what MS medicines are available on the NHS? Let's have a look and see what they say, this is interesting. So they talk to, the response that comes back and says, yeah. So on the NHS, have several medicines and treatments available for multiple sclerosis, which aim to help control the condition and ease some of the symptoms. It talks about steroids, to speed up recovery from a relapse. Absolutely. It talks about amantadine for fatigue. And it does mention it might only have a limited effect as reasonable. And then it says that visual problems will normally get better on their own, which seems a bit random. It does mention the disease modifying therapy, so which is fair enough, but it doesn't go into any detail there, is just as they will have a different combination of benefits and risks. So it’s very, very general. And they do refer, which again, which is good. They do refer to more detailed information on the specific medicines and treatments. With first, the NHS website, the MS trust and the MS Society. So that's really nice to know.
We've got some trusted sources, I guess.
Yeah, I think when they've been when, they are transparent about that, when they are very explicit about what their sources are, where they've where they're taking this information from, then it is in a way just like using something like Google, you know, just, just searching. But I think you still have to maintain that little bit of scepticism about, just let's just check just because it's come back, you know, just because it's AI doesn't mean it's right. I've certainly tried things in the past and got the completely erroneous results, where they, I've they've I've asked you who what celebrities in the UK have got MS, for example, and it's come back with people that I didn't know about, and people who have disclosed, and it's come back with completely different people as well. So yes, absolutely, Jack Osbourne, you know, we're, he's, he's been very public about his journey with MS. But then said, Stephen Fry. Well, I don't think Stephen Fry's ever said anything about MS at all. So don’t know where it got that from, secret knowledge? Could be secret knowledge, it could be making it all up, though.
Who’s to say that, yeah, we have no idea. I was scared to mention, one of this sort of one of the bigger large language models, mentioning no names, when you use the free version of it. I know that it's pulling data from ,from the web from 2021. And I'm by no means an expert. But obviously, things change, you know, things like treatments for MS. You know, things are going to change within that, that window. So again, as you were saying, you know, to be sceptical of what you're reading, where you're getting your information from actually that, that information could be quite far out of date, particularly when it comes to some of those very time sensitive topics.
Absolutely. And if they're looking for their information on other web pages, which they have not themselves been kept up to date, then they're going to be doubly doubly problematic, I think. So yes, if you can follow, if you want to use these language models, use the AI as a way of navigating the internet, there is a absolutely, get it. There is a bewildering variety of information sources out there. But you do at some point have to decide who you're going to trust. And organisations like the NHS, like the MS trust, like your own hospital will or, or source, you know, those are things that you can have a really high degree of trust in. Where there'll be some sources that you just would want to take with a pinch of salt, or you might want to weigh in balance accordingly. And I think probably the AI models have a bit of, they're a little bit vulnerable to being sort of biased by popular or trending questions for example. So you might, you might not get a response that's really evidence based, you might just get a response that happens to be popular because lots of people have been talking about it.
I suppose you need to approach it a little bit like you approach, when you ask for advice or help on social media because you know, you're gonna get a lot of different opinions out there, you're gonna get everyone's saying oh, this worked for me. This is great and I don't take any drugs, I take all the drugs, you know, there's always going to be a bit of variety there, and you have to still go and find your trust, this trusted resource where you actually get the proper information from. Rather than just trusting whoever because you don't know who you're talking to.
Yeah, and I think that's a danger with these large language models, is that they sound like a person. They sound like an authoritative, calm, respectable person who isn't going to mislead you. But just because they're using, just because they're giving their answer in a really nicely written understandable accessible way doesn't mean that the answer is true. I think in many cases, it's going to be helpful. In many cases, it's going to help somebody to navigate around, around different sources. But yeah, maintaining that, you know, who's telling me this? How do I know that they know anything about this at all? And who can I check it with? How can I check this information? I guess. So, it might be worth thinking about the kinds of questions you're asking. And being really specific with how you write them, or maybe write them a few different ways to see if you get different answers when you put things in a different way. Being specific about who you are, I guess not in terms of giving away personal data, but saying, I live in Britain, I'm a woman. What's the best thing here? Or I'm a man in Wales? Where can I find my MS nurse? In fact, that's quite good. How can I find that MS nurse in Wales? What to get okay..this is nice. So to find an MS nurse in Wales, you can use the resources provided by the MS trust. Provide a map of MS services, includes links to nurses around the UK. There you go. So that's just helped somebody find our stuff faster. And that's lovely. You know I’m all about that. It's all about people finding that. So often, our websites or web pages are at the mercy of the big algorithm. And you know, we might have the best information in the world. But if Google decides it doesn't like it, then you don't see it. So this is nice, because it's got there. It's got straight there, it’s listed one of the Welsh health wards, but not any more of them. So I don't know. It's all very well, if you’re in Cardiff and Vale. But what about Anglesey? Yeah, so it's patchy. That's the other thing, you'll find the information is patchy. There'll be some probably, some really good salient bits, but there'll be some very notable gaps. And if you're asking about a topic that you don't know, all about, then you might not recognise where those gaps are.
So it's sort of early days with AI. Yes, there are some exciting things happening. And there's, I guess there's still some scary things happening there, especially when it comes to misinformation. But yeah, can we say sort of proceed with caution?
I think so. And I think we'll certainly be looking at it from a point of view of content creation. I don't think it's going to replace our writers. But I think in terms of helping us do things, like generate transcripts from videos like this quite quickly, when it comes, that helps other people find information and get the best out of it, then that's really you know, AI can be really helpful there for us but it's a, it's not it's not going to replace a team just yet. So don't, don't worry.
We're not going to be having, AI is hosting this podcast just yet.
Or are we? Or is it AI this whole time? Yeah, just didn't know.
Gosh, yes, well, maybe we can just digitally generate you, so we can always have you on the podcast.
Yea and I think that's, that's a good point to end with. So if you are looking for some advice and help around all things, MS, that sometimes having that, that person to talk to that trusted source of information is so important. So maybe moving away from the large language model, generative AI, you might want to talk to a person, instead, who does have that background, that valuable information, that research based knowledge. So you can get in contact with our helpline, say that's on 08000323839. And that's between 9am to 5pm, Monday to Friday, you can of course, drop us a message outside of those hours, we'll get back to you as soon as we can. You can also email the helpline as well, that's ask@MStrust.org.uk. And also, we'll have some new Christmas opening times as well. So if you make sure that you check our website, check our social media channels over the holidays, and you should be able to see when you can get in contact with us through there.
And as Nick mentioned we are on social media, and you can ask questions and things there too. And there's a real person that will respond to it. Not, not a bot on those ones. And we are on Facebook and we got both page and group. We're on YouTube. We are on X we are on Tiktok and Instagram. And you can find this podcast on Spotify, Google and Apple podcasts and Amazon music and this video is on YouTube. There's loads of videos from us on YouTube. And, you know, I'm going to since it's coming up to Christmas time, I'm going to be cheeky and ask that if I could have one, one list you know one thing on Santa's list there would be that maybe if you listen to this podcast and you like it, please give us a review and share it with your friends because we would love to reach some more people.
Yeah, and a big thank you to everyone who's listened this year from all of us at the MS trust. We're all wishing you a very Happy New Year and happy holidays too. See you in January!