S2E5 The COVID-19 crisis and MS with Dr Jonathan White

Geoff Allix  00:00 

Support for the Living Well with MS podcast is provided by Overcoming MS. A global charity registered in the United States, United Kingdom and Australia, whose mission is to educate, support and empower people with MS in evidence based lifestyle and medication choices that can improve their health outcomes. Please visit our website at www.overcomingms.org to learn more about our work and hear directly from people around the world, about the positive impact Overcoming MS has made on their lives. Now on to today’s episode. This is a special episode of the podcast dealing with the Coronavirus or COVID 19 pandemic and how it affects people with MS. Please be aware that the knowledge about this virus is changing rapidly and we are presenting the best advice that we have at the time of recording, but you should check information regularly including the links in the show notes to ensure that you have the latest advice. Joining me on today’s episode is Dr. Jonathan White; medical adviser and event facilitator for Overcoming MS. So welcome Johnny White, I should say actually welcome back because you’ve been on a previous podcast. I was hoping to welcome you back on happier times but we have the Coronavirus or COVID 19 pandemic and you’re here to give us more information about that, so welcome. 

 
 

Dr. Jonathan White  01:27 

Thanks, Geoff. Yes, great to be back, but as you say under rather unfortunate circumstances a very worrying and troubling time and hopefully we can sort a few things out between the two of us for the next little while and understand a bit more about this Coronavirus pandemic that we’re all having to deal with at the minute. 

 
 

Geoff Allix  01:45 

Yeah, so we’ll start with a very basic question. What is Coronavirus or COVID-19 to be more specific? 

 
 

Dr. Jonathan White  01:54 

Yeah, so Coronavirus is actually just is a grip term for a type of virus. So Corona is a crime and essentially it’s a virus which has a little spikes around the outside that looked like a crime, so that’s just a general term for a type of virus. This specific disease that we’re talking about is COVID-19, Coronavirus disease, because it was found in 2019 the last day of 2019 and the actual virus it’s the clinical diseases COVID-19 the virus itself is SARS COV 2 is what the neurologists are now calling it. So Coronavirus is in general terms and please remember and forgive me I’m not a virologist, I’m an obstetrician, so my general working knowledge of viruses is coughs and colds. But in essence the Coronavirus is one of the cold viruses, there probably are seven that we know of and that, two that most people would be aware of would be SARS, which was in 2002 and I think killed about 700/770 ish people and then Mers in 2014, which killed about 850 people. So they generally jump from animals to humans though SARS, we think came from bats, MERS we think came from camels believe it or not in the desert and this particular COVID-19 we think, and there’s a lot of uncertainty about this, but it seems that it originated originally, in an illegal animal market in Wuhan in the Hubei province of China and probably from bats, but we don’t know that for sure just yet. So yeah, that’s the sort of the basics about Coronavirus. The one thing that probably most people have heard, but I think it’s worth reiterating, for the vast majority of people this is a mild self limiting illness. We think about 80% of people will either have no symptoms or mild symptoms that will last an average between 7 and 14 days. But it’s in the the remaining 20% that we really worry, that can cause a very severe clinical disease and they’re talking about a sort of 5% severe as in meaning critical or intensive care and between probably 0.7- 3% chance of mortality if you if you develop the the clinical disease, so this is not something to be ignored despite what you see with teenagers going into shops and licking coke bottles. This is not something that just attacks the elderly, everybody needs to be mindful, vigilant and aware of this and following their local measures that are designed to reduce the spread and incidence of this disease. 

 
 

Geoff Allix  04:39 

Okay, so I was gonna say what was some of the early signs that you might have contracted Coronavirus? And so when I say Coronavirus on this podcast, we’ll use that as a term for COVID-19. 

 
 

Dr. Jonathan White  04:52 

Yeah, absolutely. The two are being used pretty much interchangeably. So the symptoms tend to develop with between 2 and 14 days after you’ve been exposed, they think on average about an up to 14 day incubation period. In the United Kingdom where I am at the minute the two big symptoms that we talk about are a new persistent dry cough, so that’s not a cough that you’ve had for months on end. But it’s a new, persistent and it’s very distinctively dry rather than productive. And the other thing that is often described as a fever so in centigrade that’s over 37.8 or over 100 degrees Fahrenheit. Other associated ones which aren’t so diagnostic, but are certainly mentioned and associated would be fatigue, so very many of us with MS can relate to that one. So very extreme fatigue and muscle pain or myalgia, as it’s sometimes known, shortness of breath or chest tightness and just in the last couple of days, a new one that is certainly being investigated is the fact that a lot of people lose their sense of taste and smell, in the days before they develop symptoms, for some people, that is their only symptom, is a loss of sense of taste and or smell. So those are the main and the most common things that people are complaining of so far. 

 
 

Geoff Allix  06:17 

Okay, one of my friends actually has been through this, or he’s well, his whole family contracting it and he said it did feel like you needed to cough almost on every breath. It was it really, when they say persistent, you feel like you need to cough the whole time. 

 
 

Dr. Jonathan White  06:34 

There’s a lot of paranoia about is this a persistent cough? But you know, to be clear things like clearing your throat the whole time or having a tickle in your throat is not Coronavirus, typical symptom, as you say. It is an unrelenting, persistent cough, and it is it’s dry, it doesn’t bring up anything, it’s sore, your throat feels like you’ve got nails at the back of it, or you’re coughing through glass. And some people also describe an intensely sore throat as another symptom that’s associated often with the cough. So yes, it’s not just a tickle or clearing a throat, it’s much much worse than that. 

 
 

Geoff Allix  07:05 

For so now, obviously, we’re both in the UK, but this is for a global audience. So it might be slightly different depending on where you are in the world. But what are some of the key steps that you should take if you think you have COVID-19? 

 
 

Dr. Jonathan White  07:21 

So, I think probably regardless of whether or not you have MS or not, or where you are in the world, the first thing if you think that you have the clinical illness, is to distance yourself socially, distance yourself, or self isolate in facy if you think you have the symptoms. And it depends on where you are as to what the the advice is, but in general terms if you live alone, you need to self isolate for seven days, so you shouldn’t be outside except for in your garden or backyard if you have an outside space, but you should not be in contact with anybody, even the postman or mailman delivering letters. And you shouldn’t be going to the shops to collect your your food parcels. It should be coming to you and left at your door, you must not be in contact with people. That’s the first thing to say if you think that you have the Coronavirus. If you live with other people, if you’ve a family or people in your home, then that advice, I can only speak from the UK perspective, but it to me it makes perfect sense that that needs to be 14 days because obviously everybody in the house, they may not get it, but if they are going to get it, they won’t all get it on the same day. You know, that’s not the way unfortunately these things work. So it needs to be 14 days that the family are self isolating, as I say, that means essentially locking down the home and having no contact. 

 
 

Geoff Allix  08:44 

So you’re basically treating the family as a unit. 

 
 

Dr. Jonathan White  08:47 

Correct. Anybody in your house this thing is unbelievably infectious. So you know, we talk about you’ll probably like this Geoff as a data analyst. But the R zero is this statistical idea that’s bandied around to do with how infective something is. So in general terms, the seasonal flu, in fact, it’s our zero number is 1.5. So if I have the flu, I will infect one and a half people with the flu, with Coronavirus, that number is probably somewhere between three and four. So people are talking about 3.5. So it is incredibly infectious and you must must stay away from people. If you think you have the symptoms. 

 
 

Geoff Allix  09:30 

And so you mentioned social distancing, self isolation. What’s are the what are the two terms and what’s the difference between those?  

 
 

Dr. Jonathan White  09:40 

I’ve already mentioned is self isolation, which means you’re at home, you’re not leaving home except to do exercise either in your garden or in the homework, but you’re not in contact with anybody. Unless people that live in your house, obviously it’s difficult for you to avoid them. But even in that circumstance you should avoid them as best as possible. So if you can sleep in a separate bedroom, use a separate bathroom or use a bathroom after everybody else has used it that day, and clean down the surfaces of everything that you use. Those are, that’s the self isolation model, essentially locking yourself away. Social distancing is I suppose one step, sort of the Diet Coke, I suppose, version of it, which is you’re minimising all social contact as best you can. And this is what we should all be doing in areas where the virus is spreading rapidly. So and you know, we’re talking about a quarter of the world’s population, I think at the minute are in some way practicing a form of this. So this is only leaving the home when you’re going to work and that’s working. If you have to go, if it’s an essential work, or if it can’t be done from home, when you’re going shopping for essential, so this isn’t browsing for a new shoes, or clothes, this is shopping for the essential foods and things you need and medicines for example, You can leave the home to exercise, but you should be doing that in a way that is, again, minimising all social contact and proximity to people. So depending on where you are, the advice may be different. But we’re usually saying between at least one meter, but ideally two or more meters gap between people to stop the spread of this condition. And it’s massively important you know, it’s not just something we say because we have no better solution to the problem, despite what some people may say, you know, there’s good evidence for this and the Spanish flu in 1918, which wiped out 10s of millions of people after the First World War. It was very, very prevalent in America, where two cities had two very different approaches, very different results. And Philadelphia, and St. Louis and Philadelphia think they didn’t practice social distancing, St. Louis did, and the cases were astronomically higher in the areas that did not socially distance. So this is a very effective technique for preventing the spread of this virus. 

 
 

Geoff Allix  11:57 

Okay, so, obviously, this is a podcast for people with MS. So specifically, is it more dangerous if you have a condition like MS and then develop COVID-19? 

 
 

Dr. Jonathan White  12:14 

So that’s a very difficult question to answer because this is a new virus, we don’t know. So there’s obviously a caveat to this, what we think at present is you’re not more likely to get COVID-19 just because just by virtue of having MS. So MS itself doesn’t mean you’re more likely to get COVID-19. I suppose the area where it becomes a little more tricky is that many people with MS and that’s mainly people with Relapsing Remitting MS are on DMD or DMT. And those by their nature are designed to either modulate or suppress the immune system, you know, MS is an autoimmune condition so the treatments, a lot of them are aimed at either changing the way the immune system operates, or by actually turning it down in quite a quite a gross way. Gross not being offensive, gross being large, if you follow me, but um, so yes, MS can have an effect on COVID-19 by virtue of the fact of the treatments that we use for it. I suppose the only other caveat to that would be that we know that generally, this disease is worse in those people who are elderly. And we used to talk about the over 70 so people with MS who are who are older may be more susceptible. I suppose if you had other other underlying health conditions, and you generally there’s a respiratory severe respiratory or cardiovascular diseases so not necessarily MS. But if you had very severe MS and you just have for example swallowing difficulties that may impact on your risk of COVID-19 because you’re more likely to choke and to aspirate on your on food and saliva and that may increase your risk of developing the condition but generally speaking, MS on its own does not increase someone’s risk of developing Coronavirus. 

 
 

Geoff Allix  14:09 

But the other way round, presumably developing Coronavirus could trigger a relapse in MS? 

 
 

Dr. Jonathan White  14:17 

Absolutely. Yes. So the reverse is definitely true. So if you have MS we know that there are things that increase the risk of relapse and infection is certainly one of those if you have a severe systemic infection that is going to significantly increase your risk of relapse. Yes. So, whilst MS may not directly affect the Coronavirus, the Coronavirus definitely can affect your MS. So, yes, you’re absolutely right on there. They should absolutely and that depends on where you live as to what your your government’s guidance is on that. But as a general rule, I think people with MS should be socially distancing as much as is physically possible. They should work from home if that’s possible for them, they should avoid public gatherings, they should avoid public transport and there’s there’s probably a small group of MS people, or people with MS that should actually rather than socially distance they should self isolate. And I would say that those people are those that have a recent stem cell transplant, if they’ve recently had a course of Alemtuzumab, or recently had Cladribine or Mavenclad than they probably should be self isolating, because those are three therapies that will significantly alter your immune system and they probably would increase your risk, although we don’t fully understand them yet. But it seems sensible that they would increase your risk of developing Coronavirus. 

 
 

Geoff Allix  15:44 

Yeah, so I wanted to go through some of the DMT’s. And there’s a link to a site that we’ll put in the show notes from a neurologist who we’ve had on the podcast called Gavin Giovannoni. Who’s put a site specifically for COVID-19 and MS. And he’s grouped up the DMT’s into risk categories. And I just wanted to go through that, because there are so many now I mean, that is actually one of the good things about MS treatments is there really is a huge choice of treatments. 

 
 

Dr. Jonathan White  16:19 

Yes, and and developing all the time.  

 
 

Geoff Allix  16:23 

So hes mentioned that there’s a very low risk category for COVID-19, which is interferon beaters, Beater feron so on Capaxone, Aubagio are all very low risk, you should definitely continue treatment, safe to start the treatment and continue treatment, if you’re doing it, no problem at all. And there’s a low risk category Tecfidera to Sabri and, again, safe to say to start the treatment, certainly continue treatment. There’s always a risk Tecfidera can cause your lymphocyte count to go low but that’s being monitored anyway, I was on Tecfidera and taken off it because my lymphocytes were low. So that’s monitored anyway and then we get on to the sort of ones which are potential problems. So they have an intermediate catergory which is; Gilenya, Ocrelizumab and Mavenvlad. And currently saying that it’s probably okay to start treatment, and you should continue treatment and those shouldn’t necessarily cause aproblem. If you have a COVID-19 infection, you might want to temporarily suspend or delay treatment of those and so again, so no major risk there. And then it does go on to as you mentioned, the ones where there could be an issue. So one of those Novantone, I think that’s really just come into market, isn’t it? And not widely used? 

 
 

Dr. Jonathan White  18:15 

Yeah, so that wouldn’t be very commonly used at all. That’s a very end of the line. Very, very risky treatment. Novantrone wouldn’t really, but certainly, yeah, that’s not something that’s commonly used. But there are some which are much more commonly used.  

 
 

Geoff Allix  18:30 

Yeah, so then it comes on to so that one that does say you shouldn’t start treatment and you should suspend dosing. And then Lemtrada, which is what I have, which i took particular interest, which is not safe to start treatment. If you are taking it you should suspend dosing. That with that, specifically, if people aren’t aware, it’s basically a treatment that you have, one year apart, typically just two rounds, but sometimes three. And if you’ve had the first round, then it’s saying you can delay it’s typically a year apart, but there’s absolutely no reason it couldn’t be 18 months. So you would delay that. Now the issue comes when I’ve had the second round, but I had it last May. And so I was somewhat conscious because my lymphocytes, the last blood test I had were at 0.56 which is low. And the advice is they think you need a 0.8 to really protect you from this, so it’s low, and I was expecting to get a letter from my health service to say you’re particular risk and you need to they call it shielding, which is like 

 
 

Dr. Jonathan White  19:46 

It’s reverse quarantine, isn’t it? 

 
 

Geoff Allix  19:48 

Yeah, it’s self isolation Plus. It’s isolating you from the rest of your family and everything. So I was expecting this. But then actually they said well, even with that it’s only within the first few months, once you’re six months post your last infusion, then your immune system is protecting you enough. So even with that, not to worry overly, obviously, I know that I’m an increased risk and I’m isolating with my family. But don’t panic. 

 
 

Dr. Jonathan White  20:28 

No, absolutely, absolutely. So that’s the first thing to say is that nobody needs to panic about this. The other thing to say is that no one should stop taking any of their MS treatments before they’ve spoken to their MS team because that significantly that can do significant harm, you know, your risk of relapse if you suddenly stop treatment is higher. And also with certain treatments, for example, Tysabri or with Fingolimod or Gilenya, you’ve a risk of rebound where you actually end up with worse symptoms than when you started. So nobody should stop this, I understand, and I appreciate that it can be difficult to actually physically get to speak to your MS team at the minute. But the most important thing you can be doing is the self isolating the protection measures that we’ve discussed, rather than just stopping everything on your own, because that is not not the way to deal with this. 

 
 

Geoff Allix  21:23 

And the final one is HSCT? 

 
 

Dr. Jonathan White  21:28 

Thats stem cell transplantation. So yes, and that ism that’s a very very aggressive treatment for MS, generally done in the setting of a clinical trial or in some centers or with other people travelling to foreign countries and to different healthcare systems to achieve that. That’s essentially a bone marrow transplant, it’s completely destroying your immune system and restarting it. That’s the one that’s an absolute, you must postpone that treatment. If you’ve just recently had that treatment, it’s likely that you will be in a hospital setting anyway until you’re safe to recover. But even if you are recently discharged from hospital, having had that stem cell transplant, you need to be extremely, extremely careful. And that really is the shielding measure, you know, stuff isolation plus plus, if you like, as a way of protecting yourself from this. 

 
 

Geoff Allix  22:24 

And I just wanted to come back to Lemtrada. Actually, one thing I’ve spoken to my personal specialists, because people who have had Lemtrada are on five years of monthly blood and urine tests. And I said, so should I go into hospital to have my bloods done, he said absolutely you must go into hospital to have your monthly bloods. So there are secondary risk factors, particularly thyroid issues with Lemtrada. And they are potentially very, very dangerous not life threatening dangerous, but they’re very easy to treat. So the risk of you having a thyroid condition that potentially kill you is actually higher than the risk of COVID-19 killing you. So you absolutely must still do that. But just to do it in a as isolating away as possible. So it may be that you don’t go into hospital, it may be you go to GP surgery, it may be that you can get someone to come out to you to do blood tests. But but don’t stop having a blood test done. 

 
 

Dr. Jonathan White  23:33 

No, nobody should stop there the routine drug monitoring that’s absolutely correct. It’s really really important that we are monitoring, for as you say the side effects are of most of these things are generally treatable either by changing the treatment or stopping the treatment or by treating the new secondary autoimmune condition that develops as you say, thyroid is common one. And if you don’t recognise them, then they can cause problems. It is very, very important that people are still engaging in the regular monitoring settings. And I’m sure that you know, MS teams around the world at the minute as in many, many conditions in health care settings are furiously trying to work out how they do that. But it is massively important that you do continue to have the tests that you would normally have done, yeah, absolutely. 

 
 

Geoff Allix  24:20 

And more generic appointments, would you still attend hospital appointments, meet your MS nurse or MS physio? 

 
 

Dr. Jonathan White  24:34 

I think in the weeks and months immediately to come a lot of the appointments that we’re going to be seeing in the MS setting are going to be remote and digital you know they’re going to be over the phone or via Skype rather than face to face because actually you can you can learn a lot from somebody’s MS just by talking to them. Yes Okay, examination is relatively important but even that you can do a lot of over you know, a video call and so I think that the amount of face to face probably should be limited and probably will, as resources are, you know, moved and altered in the health service that’s required. But if you are asked to come to the hospital to attend your neurologist, and I think that you that you probably should, you should certainly speak to them. If you’re concerned about coming rather than just not going. I think that it’s really, really important that we continue to engage with, you know, the normal things that are important in our healthcare. You know, there’s a tendency to focus absolutely everything on Coronavirus, now and undoubtedly, that has to happen to huge to a greater or lesser degree, but there is definitely the potential for harm with people with conditions or not managed appropriately, you know, during the phase of this. 

 
 

Geoff Allix  25:49 

So another thing I wanted to cover because with, obviously, we’re talking about the Overcoming MS protocols. So it’s not a lot of people consider it a diet, but it’s not just a diet, there’s also the mindfulness part of it and the exercise part. And so we’re in a situation now, the mindfulness part, there’s a barrage when you when you put the news on, there is no, there is no other news, because there’s no sport at all. So there is that’s pretty much no other news. So it can be I certainly, I mean, my mother she’s very worried about the she’s, you know, I’m trying to she’s saying is so bleak. And,  because you’re stuck and isolated and all the news is all about this, I think, hopefully, months down the line, we’ll be starting to get more positive news, as you know, obviously, like China have they are sort of coming out the other end, and there will be a time when we start to come out the other end and become more positive. But at the moment, it’s quite negative news. So how do you keep a sound mind would be the first question, is there anything we can do? 

 
 

Dr. Jonathan White  27:09 

Well, you know, I was thinking about this yesterday. And actually, I believe, as a community, as a group of people, we’re masters are uniquely equipped to deal with situations like this. So you know, A, we have a condition that provides a huge amount of uncertainty in our day to day lives and we have to deal with that some of us have been dealing with it for a month, some for years. So it teaches us resilience, you know, whether we like it or not, we’ve had to deal with an awful lot, most of us. So I think that our general mindset is strong in that sense. But also, we are extremely fortunate that we have got a worldwide digital community already. For many people, they’re having to learn new ways of doing things like connecting Well, you know, look around the OMS community, we’ve been doing this this way, and it’s improving, you know, day by day, almost. So we have a huge community out there to support each other and I think that’s massively important. As you say, you know, self care and times like this has never been more important. You know, there’s this phrase about terror scrolling, we just can’t stop yourself from looking at your phone or tablet, and you just almost more horrified with every time you swipe your finger. And I think it’s really important that you do set, you know, limits and barriers to yourself to give you that space. And so for me, the first thing I do is the only news I ever watch or look at night is the daily briefing in the UK at five o’clock and other than that, I don’t look at the news. And I’ve deleted those apps off my phone because they’re just so unhelpful. And A, it’s often without the appropriate context, some of them might be factually incorrect, there might be opinion involved, as is probably the case with some American  ads apparently, certainly. So that’s the first thing to do is I’ve just given myself space, and I’ve deleted those things. I sort of take it that if something important happens, I’m going to hear about it one way or another when it comes to this. I’m absolutely, you know, mindfulness is a part of my daily routine anyway, but it used to be sort of trying to do my 20 to 30 minutes once a day, I’m now trying to do that first thing in the morning as a morning meditation and last thing at night before I go to bed. And I think that’s really, really important. And of course, the OMS website has endless resources regarding that, but there are, there are so many apps and it’s great to see that so many of those things are temporarily free, and they’re giving us that resource which normally has a subscription cost. So I think there are certainly positives as many of them coming out of this situation that being one. I think also if you said, for many of us, we can’t get out anymore, and that’s very frustrating, but you can and you must still exercise. So when I left the living room this morning, my wife and son were busy doing a YouTube PE class together.  

 
 

Geoff Allix  29:55 

This is in the UK a huge thing at the moment. There’s this, it’s available to everyone, actually. 

 
 

Dr. Jonathan White  30:02 

So yeah, Joe Wicks is a guy in the UK, who’s am advocates for fitness coach, life coach, he teaches a bit about nutrition as well. And he’s got a free daily class for kids, but tell you what it looks like pretty hard work when I saw Jenny doing it this morning. And there’s loads of those who, you know, I go to a regular Pilates class at home and unfortunately, that’s obviously has been cancelled. But that resource has been put online for us once a week, so we can still get our class. But there’s many, many of them that are free and easily available, if you type it into YouTube or searching Google find many, many things. And another thing, I think that’s really, really important if you’re talking about distancing yourselves from media, and social media as well, talking about self care, and meditation, as well as exercise, eating well, is really, really important. I know that we talk about that being a cornerstone and the key pillar of OMS anyway, but at times like this, it is very tempting to just go into the freezer and stick on something that maybe you would eat very, very infrequently as a slight treat on the OMS programme, but you know, good nutrition and eating well is incredibly important for your physical and mental well being at times like this, this is just, you know, we’re in a bit of a war zone at the minute and we have to do all we can to look after ourselves and, and feed body and mind. 

 
 

Geoff Allix  31:25 

I want to come back to diet in a second. But before I do that, I just wanted to mention one other thing about this sort of a sound mind. And obviously so we’re isolating and humans are naturally social creatures. And there’s an OMS circles programme, so that basically local groups can get together and so there’s a circle where I live, and periodically we meet up in a cafe, and discuss how we are and everything. And it’s nice to get together, even my wife, she doesn’t fully appreciate what I’m going through, because she’s not going through it. But these are people who are going through exactly the same as me and it’s good to you have that connection. So obviously, the meetings aren’t happening, but what we’ve done is set up a slightly broader group, actually, three local circles have got together and set up a WhatsApp group. It’s really just socially chatting really, with people who are in exactly the same situation as you, so you can keep social contact without physical contact. And I think it’s important as well, a lot of people are using FaceTime, or Skype or whatever video system, and they’re getting in touch with their relatives, I mean, certainly elderly relatives; my mother and my in laws, we’re actually communicating more, I’m speaking more to my brother at the moment, because I’m not speaking to other friends. So you can keep in touch by telephone, by Skype by whatever digital communication method you have and we can socialise, so I would encourage people if it’s a good idea to to connect with an OMS circle, even though I mean they’d geographic, that’s almost irrelevant at the moment. But joining in with groups of with other people, just to have a chat really is a good thing to keep your mind, or keep that social aspect of your mental side effective. 

 
 

Dr. Jonathan White  33:38 

Just because you’re self isolating doesn’t mean that you have to be isolated yourself, you know, that you’re absolutely right. I have spoken to my family and FaceTime my family more in the last two weeks than I probably have in about six months. Now, obviously not the family that I live with, but I mean, my wider family circle. And you know, we’ve been in touch with elderly neighbours making sure that they have all that they need, they’ve actually been in touch with us to to make sure that we have all that we need. And while undoubtedly this is a very, very difficult time,  there are some real positives coming out of it, you know, in terms of the act of kindness and compassion that we see. And yeah, it does warm the heart when you need it most to see that the efforts that some people are going to try and help themselves, their neighbours and the wider community. So there is some good to be seen if you look for it. 

 
 

Geoff Allix  34:28 

Yes, and this is fantastic. I think this is in most areas, there’s groups set up to help you if you do have to isolate if you say you’ve had HSCT or something, something where you really do need to properly shield, people are setting up local groups where they will go and get shopping for you and bring it to your house. Obviously leave it outside your front door, but you know, we can do all those sort of things. So sorry, you mentioned diet. So I had a question I asked to sort of the group’s invovled, did they have any questions to ask? And one of them was that in the OMS book, George Jelinek, says not to take multivitamins, and does this advice still stand during the pandemic, if you’re struggling to get enough nutrients from the food, because there are shortages in shopping? So you may not be able to get the full range of foods that you would typically get. And if you think you aren’t getting a full range of nutrients from your food at the moment, would you then take a multivitamin? Was the question. 

 
 

Dr. Jonathan White  35:33 

So generally speaking, I wouldn’t take a multivitamin. You know, even if you can’t get exactly what you would normally, by virtue of the fact you’re eating specifically, in OMS, you know, the whole food plant based diet plus or with with or without seafood, you’re very likely to be covering all the basic micronutrients. And it’s very, very unlikely, in the short, you know, short to medium term that you’re going to become deficient in a one particular vitamin. I think, as a, you know, and this isn’t sort of cleared viewed medical evidence as such, but I think if you were going to take any vitamin at the minute, ensuring that you’re taking an appropriate dose of Vitamin C or vitamin C, would be important to the you know, there’s we generally talking about that in the winter time anyway to prevent coughs and colds and things. But there is some evidence that Vitamin D or Vitamin C sorry, It’s just force of habit saying Vitamin D, but Vitamin C probably does have an effect on the immune system response to viruses, and it certainly in the short to medium term is not going to do any harm. So I would definitely continue my Vitamin D and I would certainly continue with Vitamin B 12. If I was wholly vegan, and I would possibly think about adding in some Vitamin C, but I don’t think for most people that they will require you to take a multivitamin. And please remember that, you know, generally taking multivitamins, there has been studies to show that, you know, taking vitamins for those specific reasons does increase slightly are all cause risk of mortality. So, you know, just throwing multivitamins at a general problem isn’t always going to be the answer on that one. 

 
 

Geoff Allix  37:10 

Okay, and you mentioned Vitamin D as well,  there’s been some talk that potentially, I know it was mentioned, maybe as far back from Spanish flu, they think that people might have done better when they’re out in the sunshine. Is there a potential positive benefit? I mean, we’re taking Vitamin D because part of our protocol, but yes, is there are potential positive for the COVID-19 side of things as well.  

 
 

Dr. Jonathan White  37:33 

This is extremely interesting. So we’re starting to see little snippets of this coming out of China, because obviously they have the most experience in this. Theoretically, it certainly makes sense. So we know that Vitamin D is a very potent immuno modulator. So it has a very important effect on balancing the immune system so the pro and anti inflammatory sides of the immune system, if you think of two sides of a seesaw, it’s very, very good at turning that balance back to the anti inflammatory side of things. And we think in COVID-19, or Coronavirus, that a lot of the people who become extremely unwell, it’s potentially not due to the virus directly itself, but rather, the immune system’s response to the virus. And people may have heard of this term, the cytokine storm, which is essentially where the body responds to the virus by turning up the levels of the proinflammatory little chemical messengers to a very, very high level, and it’s a lot of that cascade that does the damage specific to the lungs. So, if you follow the theory that Vitamin D is a very potent sort of balancing act of the immune system, and it helps to put things back in balance, then it would stand to reason that perhaps it would be beneficial. And there is some evidence to say that Vitamin D may be a benefit with Coronavirus. Of course, for us and the OMS programme, our Vitamin D levels will obviously be higher anyways. You can’t up them overnight, so it’s not like we go out and get our Vitamin D levels up to normal within 24 hours, but we should take solace and comfort in the fact that it’s likely for us who’ve been monitoring our Vitamin D and taking Vitamin D for periods of time, that that may well be a protective benefit in Coronavirus. So that’s a potential positive for us. 

 
 

Geoff Allix  39:21 

A similar question was that because you mentioned that it may actually be your own body’s auto immune responses causing the most severe damage that there was mention that may be actually that some of the DMT’s actually rather than actually causing us major issues may actually be beneficial. Is that the case? 

 
 

Dr. Jonathan White  39:43 

So yeah, now I would caution to people to say well, you shouldn’t just change the DMT your are on because of the theoretical antiviral benefit but, so if we think about two specifically interferons and Gilenya, so the interferons were initially designed as an antiviral treatment for Hepatitis. So they have they have an intrinsic antiviral property, so they will naturally do that. And it seems as well that the Fingolimod or Siponimod, but that’s not widely available, that they may also have an antiviral effect, and they are actually being investigated in a trial setting in China at the minute. But that said, many, many drugs are be investigated in trial settings, obviously, to try and find something that may be of benefit. So yes, there are you potentially, those specific classes of DMT’s may have a benefit. That’s a bonus if you’re already taking one of them, but it wouldn’t be grounds on its own for you to change DMT. And just on that point, as well,  I’ve seen a lot of people saying, well, what do I do if I’m on a DMTand I test positive for COVID-19? Do I stop my medication immediately? Well, again, that’s difficult to answer because we simply don’t know in huge numbers of people. But as a general rule, and I think this is sensible, I’ve seen it from a few sources, that you should not stop taking your DMT just because you have COVID-19. Remember that 80% of people will have a very mild self limiting illness. The time when it’s probably the stage where you should stop your medication is if you’ve developed a severe case, and you’re being hospitalised. I think at that stage, you know, there’s again, there’s not huge peer reviewed evidence to say this, but it makes sense that you probably if things are that bad, you probably should stop your DMT. But remember that they all have a washout period, they don’t just, they don’t disappear from your system overnight. So Fingolimod takes six to eight weeks to get out of your system and you also wouldn’t stop your DMT just because you have a cold or flu. You know, I’ve had the flu two or three times since I’ve started MS medications, and I haven’t stopped mine just for that. So you don’t need to just stop your medication just because you test positive or you feel unwell. But if you get to the stage where you’re needing hospitalisation or further more intensive treatments, at that stage it is it is probably worth stopping things. But again, if you’re in any doubt, that’s probably something that the medical teams need to be discussing on your behalf. 

 
 

Geoff Allix  42:27 

Okay, so there are some potential plus sides, the Vitamin D, potentially some of the meno modulatory treatments. That it’s not all dark news for us. And so I just want to ask now is there any other points that you think are worth discussing? 

 
 

Dr. Jonathan White  42:51 

So I think in terms of what we can all do to prevent the disease, A spreading but B, contracting it ourselves. It comes from the World Health Organisation. So this applies no matter where you live, you need the most important thing to do is to wash your hands frequently for 20 seconds or more at a time using warm water and soap. This is a virus that is contained within little fatty envelope, fat is broken down by soap. It is the most important thing that you can do, washing your hands for 20 seconds or more frequently, or if you can’t get access to soap and water and you can get access to hand sanitiser, which I know is also difficult at times, that’s extremely, extremely important. That is the most important thing we can do it cannot be overstated. Another thing that’s really important is that we should and it can be difficult is avoid touching your hands to your face to your nose, your eyes to your mouth, and keeping more than one and a half to ideally two meters away from anybody who’s not a direct family member who lives in your home. If you are coughing and sneezing, either do it into a tissue which you then bin or if you don’t have a tissue on you, cough or sneeze into the crook of your elbow that is absolutely vital to prevent the spread of this disease as we’ve already touched on, It’s extremely, extremely infectious. It’s also worth mentioning that we think at the minute this is spread by droplets rather than in air itself so it’s not aerosolised. So the issue of face masks is one that’s controversial. You know, we saw in many Asian countries that they it’s almost part of normal culture for them, for many people have mentioned cultures if they are travelling to use a face mask anyway but you know it was almost being a thing that was being government mandated at a time. So, facemasks now obviously are in very very short supply, generally speaking, they are not effective at preventing spread of oh sorry preventing you developing a disease but they may prevent the spread of the disease. So the time when a face mask is appropriate actually is if you did need to go out you think that you may have that the Coronavirus you ideally should not be going ou anyway if you think you have it, but it’s the people who already have the Coronavirus that should wear the mask rather than people that are trying to not develop it, if that makes sense. And probably the final thing is that there are a couple of myths about Coronavirus and what may or may not work as a treatment. So it’s social media, you can get huge amount of information, but you can get a lot of information without the appropriate context. One of the ones that you often see is about eating huge amounts of garlic well actually that that’s not been shown to be of any benefit. There is a growing market for something called Colloidal Silver, which is silver molecules in a solution which you take again, there is no evidence for that and that could be poisonous at a high dose. But one thing that has been slightly, I think, possibly misrepresented and we’re not 100% sure if it’s true or not is regarding ibuprofen, which is a common painkiller often used for treating sort of simple aches and pains. There was some evidence, we think in France, that people who were who were doing worse, or had more severe cases of Coronavirus, had been using ibuprofen, then it came out as saying actually that was all false the current guidance in the United Kingdom and I can’t speak for other listeners around the world but it would be worth checking whether or not you are recommended to take it because I present in the United Kingdom, we’re saying you should probably just take paracetamol or for our American listeners Acetaminophen if you have pain or fever and to avoid the ibuprofen at the minute, but that as as with many things, it’s a developing situation and it’s worth keeping an eye on. 

 
 

Geoff Allix  46:37 

Okay, thank you very much for that. So I think we’ve got some key guidance there and also, that we don’t need to especially worry, we should certainly self isolate, we should take all precautions. There are slight additional risks, but it’s nothing we need to panic about as people with MS. Whether we’re on a disease modifying therapy or not and that if we’re careful and sensible, then we can get through this as individuals as nations and as a global issue. 

 
 

Dr. Jonathan White  47:21 

Yeah, as somebody once said, there’s never a storm that didn’t blow over. And whilst that seems trite and cliche at the minute, I’m really I’m holding on to it because at this moment in time, things seem pretty dark. But you know, the darker it is, the brighter the stars shine, and we’re really seeing that. And I believe that we will as a species as humanity, we will get through this, it is a massive test. But we will get through it and panicking about this will not help us achieve that goal. So please look after yourselves, look after your family and look after your loved ones. 

 
 

Geoff Allix  47:58 

Right. So thank you very much for joining us again on the podcast. Hopefully next time you’re on the podcast. It will be happier times. 

 
 

Dr. Jonathan White  48:07 

Yeah, I look forward to it Geoff, thank you very much for having me back again. 

 
 

Geoff Allix  48:14 

With that, I’d like to thank you all for listening to this episode of Living Well with MS. Remember, there is a wealth of information at overcomingms.org including show notes, and an archive of all Living Well with MS episodes. Once again, that’s overcomingms.org. There you can also find OMS friendly recipes and exercise tips, connect with other OMSers in your local area through our OMS Circles programme, and learn about the latest research going on in the MS world generally and related to OMS specifically. I encourage you to register on the site, and stay informed about the latest news and updates. I also encourage you to subscribe to this podcast, so you never miss an episode and please feel free to share it with others who might find it of value. Let us know what you think about the podcast by leaving a review and if you have ideas for future episodes, we’d love to hear from you. So please contact us via our website overcomingms.org. Thanks again for listening, and for joining me on this journey to Overcoming MS and Living Well with Multiple Sclerosis. I’m Geoff Allix and I’ll see you next time.