06 - Professor Nick Sculthorpe - Long Covid Research Projects at UWS

Episode 06 of the Long Covid Podcast is a conversation with Nick Sculthorpe, Professor of Clinical Exercise Physiology at the University of the West of Scotland. We talk about the two Long Covid studies they have been given funding for - Tracking Persistent Symptoms in Scotland (TraPSS for short) & the NIHR Pacing Study.

We talk first about the TraPPS study - skip to 22 minutes to hear about Pacing Study only.

Pacing study information (now recruiting): https://drive.google.com/file/d/1ZZmitbIbKaocYTBAL6yksfTCqzsqvLG9/view?usp=sharing

TraPSS - https://www.cso.scot.nhs.uk/outputs/cso-funded-research/long-covid-call/
NIHR - https://www.nihr.ac.uk/news/196-million-awarded-to-new-research-studies-to-help-diagnose-and-treat-long-covid/28205

Scotsman article on the NIHR pacing study: https://www.scotsman.com/health/long-covid-study-launched-to-reduce-symptoms-of-extreme-fatigue-3314155

Follow Nick on Twitter - @UWSNick @UWSlongCOVID 

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(music credit - Brock Hewitt, Rule of Life)

Chapters

• 0:00 1 Intro
• 3:50 2 TraPSS - Tracking Persistent Symptoms in Scotland
• 22:56 3 Long Covid Pacing Study

Transcript

Jackie Baxter  
Welcome to the long COVID podcast with me. Jackie Baxter, I am really excited to bring you today's episode. Please do check out the links in the show notes where you can find the podcast, website, social media and support group, as well as a link to buy me a coffee if you are able, you should not rely on any medical information contained in this podcast and related materials in making medical health related or other decisions, please do consult a doctor or other health professional. I love to hear from you, if you've got any suggestions or feedback or just want to say hey, then please do get in touch. I really hope you enjoy this episode. So here we go.

Jackie Baxter  
Hello and welcome to this episode of the long COVID Podcast. Today I'm talking to Nick scoffthorpe from the University of the West Scotland about two different research projects that he's involved with to do with long COVID It's a really, really interesting chat, so I hope you enjoy it.

Jackie Baxter  
So thank you so much for joining me on podcast today. It's absolutely wonderful to have you here. Thanks for inviting me. So just to start off with, maybe you could introduce yourself a little bit and explain about who you are and what your role is at the university.

Nick Sculthorpe  
So my name is Nick Scofield. I'm a professor at University of the West of Scotland. My official title is Professor of Clinical exercise physiology, and so I'm a physiologist by trade. My background is really Sport and Exercise Science. Less the sport stuff, more. The real research interest over the last few years has been Exercise and Health really, particularly to do with aging, how we can use exercise to improve health outcomes in older people. So that's my background. Clearly, the last year or so, we've all changed a lot to try and do more kind of COVID work, and to try and work out where we're going with whole issues with COVID, and particularly, obviously long COVID. And we'll get on to that. Essentially, I'm a physiologist masquerading as someone who's working on COVID. That's where I am amazing.

Jackie Baxter  
So I'm just really curious, how do you go about getting funding for studies like this,

Speaker 1  
lots of trial and error. I assume it's the same as getting funding for anything. You know you're there are always more good ideas than there is money. There's always more good people than there is money, mechanically, that there will be a call for research in a particular topic. In this case, the two we've got the moment there are second and third to do with COVID, but there'll be a call if you think you've got a good idea to answer some of the questions that call once answered and you put a proposal together, it gets reviewed, and usually you'll get rejected just because there are way more applicants than there is money. That's just, that's the process. But if you've got a good idea and a good group and good track record, then you can get funded, and that's how you end up. That's how I ended up with a bunch of studies related to COVID at least. That's

Jackie Baxter  
amazing. And with a new thing, I guess there's quite a lot of different angles to tackle with something like long

Speaker 1  
COVID, COVID and long COVID, the kind of worldwide nothing to do with me, just find that out. But the worldwide effort, in terms of research outputs, been massive. I think I've ever seen anything like in the last kind of 18 months, just huge output.

Jackie Baxter  
Well, hopefully that's good news for people with long COVID And for COVID. So, yeah, you've got two different studies that you're working on. Maybe we can just talk a bit about both of them. So I've put the first one down as tracking persistent symptoms in Scotland, which is a bit,

Unknown Speaker  
it is a little hence traps. Yeah, yes,

Jackie Baxter  
chats will go for that. So are you able to explain what gave you the idea for this? So

Speaker 1  
we'd already done one, one study related to COVID. It wasn't to do with long COVID. It was to do with activity during lockdown. It was slightly different. And from that, we've become interested in what were called at the time, long haulers. I know their name's still used, but I think most people have settled on long COVID as their preferred this so this call actually came out around last October, November time. So this is one that people ask why research is slow just because there's a call. Call ask be over for a couple of months, and you submit, and it takes a couple of months to get a net a response, until you end up many months down the line before you start. So we put it in a bid to the CSO, who had made funding available for specifically long COVID. And one of the things we were interested in was from the literature. Clearly, the symptom load varies wildly in different studies. And in fact, it varies quite widely for. Person to person. I now know. We didn't know this when we put it in at the time, it can vary quite widely in the same person from day to day. And we were kind of curious about that, because it might be an artifact of the way the research is done, or it might not. But if you looked at the way the studies were published, there's an English study, study from America, study from Italy. This, again, this was back in October, so there was less about then than there is now. And they all had different kind of incidences. So the amount of people who had take a symptom headache, the amount of people had headache, was different in England to in Italy, to America, all very different. And we were curious, is that an international thing? This was before the Delta variant came out. So we didn't think they were just thinking about it, it's due to different variants. Is it to do with medical care during COVID, so that in different countries, you're likely to get different outcomes? And we just didn't, but we didn't know there was no specific data in Scotland, and this was a CSO call, so we wanted to start tracking some of the symptoms and start getting some data specific to Scotland, because if there is kind of groups of symptoms in different areas, then we needed data specifically on Scotland if we're going to be able to support the people in Scotland. So that's where the study came from. And then we put that to the CSO, who clearly agreed, and they agreed to fund it. So we're kind of a couple of months into that study. Now

Jackie Baxter  
that's really interesting, the idea of long COVID Being area specific

Speaker 1  
from the data that we've got. Now, I suspect it's not International, but there's clearly a cohort effect. So the first study in that CSO project was what we call a scoping review, which is where you you get all the studies related to a particular topic or different kinds of studies. So some are case studies, some are cross sectional, all very different types. And what we've found from that is that if you rank particular symptoms again, let's take headache again, right? So if you get you've got 10 studies, and you go, Well, this study reported that 80% of people had headaches, and this study reported that 50% of people had headaches, the studies that rank in the top for any given symptom tend to be in the top for every symptom that they report, and the studies that rank near the bottom for a given symptom. So if they say 6% of our cohort had headaches, they all tend to be in the bottom for all their symptoms. So we get studies where every symptoms has a high incidence, and we get studies where nearly every symptom has a relatively low incidence, and we still don't really get why that is, and these are across different countries, which is one of the reasons why we don't think it's country based. So there'll be studies from the same country where we've got high incidence and low incidence, but whether it's to do with the kind of hospital that they go to, or the kind of clinic that's measuring them at the time. It's the type of study, we're not sure, but there's clearly what we think is, I think we call it a cohort effect, and there are these cohorts that get measured where either symptom load is low across all the different symptoms, or symptom load is relatively high across all the symptoms.

Jackie Baxter  
So yeah, and that's great that you're already getting data from it as well. So maybe we should talk about how the study actually works. Is it's got three different phases. Do they over on side by side or and

Speaker 1  
not quite the the idea is that they sort of especially the first to feed off each other or inform each other. So the first phase is that scoping review I just mentioned, and that's because in the other two phases, we need to track specific symptoms. But if we're going to track symptoms, we need some good evidence that these are a good set of symptoms to track, right? So the scope and review, the initial reason for it was to try and get a definitive and other people have published stuff since then, but at the time, it didn't exist. So we needed kind of a definitive list, a strong list of the symptoms associated with long COVID, as others have published since then. We've got a list of about 198 at the minute. It's huge. There's a lot I'm quite varied, and even that actually think we've got 150 ish, but we've clumped similar symptoms together. So we've kind of clumped breathlessness, respiratory distress as kind of breathing issues. They're not quite the same, but it just helped us try and get a manageable amount of symptoms at the end. So the scope and review was essentially just to get a list of symptoms that we can all agree are associated with long COVID Even if it long list. The second phase, then, is just a cross sectional survey of Scotland, and that's about to go live the website for that setup. And so that's essentially just an online survey of people who have got persistent symptoms, in order to go through a fairly brief questionnaire and report how long since they've had COVID, since they were a diagnosis, if they had one, because obviously a lot of people in the early phases just never did. So if they know how long it's been, and if they don't know how long they suspect, and then kind of tick or cross, yes, I have these symptoms on. I don't have these symptoms, and this is how severe they are. And the idea for that is to give us a working base. Line of what the symptom load of long COVID is in Scotland, because we just don't know. One of the issues with long COVID is just the lack of data, right too. In Scotland, do 80% of people long COVID have mild symptoms and 20% are fairly severe? Or is it the other way around? We have no idea. So that's phase two. Is kind of a cross sectional symptoms in people with long COVID has gone. And then phase three, then the last one is more longitudinal, and it's slightly harder to do. So we recruit people who've recently had a COVID infection, and I don't think we're going to worry too much about whether they've been vaccinated or not when we put the application in. Vaccination issue was much less important at the time back in october 2020, it was we're not sure how many people will be vaccinated come next July, but anyway, we've got people who've been had a recent positive COVID test, and then we'll track them, because we also don't have good data on how many people are likely to get long COVID. If you have 100 people who get COVID infection, what proportion of those are likely to get persistent symptoms? And even then, I mean, there's some data from the States and Italy have got some data on that, but even if you get that, what proportion are going to have symptoms for six months? What proportion are going to have symptoms for 12 months? What proportion are going to have symptoms for like, a really long follow up time? We don't have any of that data. So what we've got for that is we've developed kind of a symptom tracking app, a bit like the Chloe app. It's not not as nice and fancy as the Chloe app, but inside of that is some questionnaires to do with pain and quality of life and symptoms and some other stuff to do with cognitive function. So we've got some cognitive function tests built into it, and a couple of simple kind of physical function tests, such to stand and so on, and we're going to ask people who enroll in the study to fill that in kind of once a month, or at least nine months. We've got funding to do it for nine months. We might carry on after that depends how many people are still in because that gives us what we call prospective data, which is more useful to us. Because the issue with the website, for example, is that, yes, we'll get a good cross section of people at long COVID in Scotland and what kind of symptoms they get, but that doesn't tell us too much about what proportion of people in Scotland, because we don't know if everyone in Scotland at long COVID is going to fill it in or 5% of it. We will never know that. So it gives us a cross sectional snapshot, but it doesn't tell us too much about the risks and the likelihoods associated with getting long COVID After an infection. And to do that, you need a prospective study. And by prospective, we mean you recruit people really early on, and then you follow them and track them for months. One of the issues is, of course, for research, we need a specific number of people, and we don't know what that number is at the moment, that was one of the issues with the CSO, because we don't know how many are going to get many are going to get persistent symptoms. We don't know if we recruit 200 people who've recently had a COVID infection. We don't know if 5% of those are going to get long COVID, 10% 50% so it's it's a little bit of an open book at the moment in terms of how many people will end up with on that study. Hopefully we don't get anyone with long COVID. That would be great. It would make the stats a disaster. It would be amazing. But in terms of kind of giving us robust scientific data, we just need a set amount of people in order that we can go right. Well, we've got enough that we can make some reasonable predictions on that. We've got fund of that for nine months that runs through into 2022

Jackie Baxter  
that will give you the ability to there are lots of people that have had a COVID infection, many of whom were very mild, and then they started to sort of get better. When I was like this, I started to get better by about three I was thinking, right? I'm feeling an awful lot better now. I was starting, you know, doing exercise and, you know, feeling like it wasn't myself, but I was getting there, and then the long COVID symptoms hit. So that'll give you an idea of people like that, where it kicks in, several months later. But

Speaker 1  
that's kind of the point of the symptom tracking. There's kind of two points that one is because we need this prospective data that I spoke about, because you're right that there's some people who get symptoms they recover from the initial COVID infections, but actually they never really get an awful lot better. And then there's kind of another group who recover from COVID actually feel like they're improving quite a lot, and then they get a crash, you'll realize what the seconds to do. We've got a mobile app for that, but one of the reasons I like that is it allows us to take measurements quite frequently, as opposed to just recruiting people, taking the measurement at week one, leaving them alone for nine months, and taking another measurement at the end of nine months, and assuming that it's just been a constant improvement or decline between those two doesn't seem to be, to me, at least, to be the most useful way we can collect data, particularly in long COVID, where we know the symptoms are really variable. If I happen to get you at month nine on a bad day, it will appear like you've got an awful lot worse. So I happen to get you on a good day or appear like you've got an awful lot better, but that might not really reflect how you've been overall for the last month or so. So we're hoping to get some high frequency, regular data, I guess, so we can see how much it varies month to month, and then also how many people transfer from COVID infection, whether that's mild or relative. Really severe, through to still having symptoms or still reporting issues, whether that's related to COVID or not, nine months post. So your

Jackie Baxter  
Phase two is the website. Is anyone in Scotland going to be able to take part in that

Speaker 1  
symptoms? A website that we're testing with, a PPI group, a public patient interaction group. We work with long COVID Scotland on both of the two studies, and so we kind of run it through some people at the moment, just to test that it makes sense. And the web designer we've got very good it won't be full of typos, because I didn't do it, but just do the questions make sense? If there's one thing that makes sense to you, but then you throw it to someone else, and they go, Well, I'm not sure what you mean by this. So there's just some tests that we've got to run through, and then once that's done, it will be essentially live. In fact, anyone can fill it in. There's no reason for anyone who's not had COVID to fill it in or doesn't suspect that they've got persistent symptoms to fill in. But it is one of the weaknesses of that kind of approach, is you assume that the only people who fill it in are people who have had an infection and have got persistent symptoms.

Jackie Baxter  
I can put the link to that in the show notes that were really useful. So you said the timescale is nine months for the tracking part, so that's phase three, but you'll be able to get data within that time you're saying. So basically, of up to the minute sort of data, yeah,

Speaker 1  
one of the great benefits of using an app is that you can pull that data remotely. Everyone doesn't have to come into the lab, which things like long COVID That's important, because you might be having a good day, but just the grief of getting a bus across down and getting just not necessarily easy to do, right? So we can pull all the data remotely, which is kind of an important part, and so we can track it as we go through a study, rather than just wait till the end and get that said, unless we get very few people with long COVID, I don't imagine we'll publish that data until we get to the end, because we need to get some idea of how variable is it. To me that last one is the most important one, because that's where we find out how often people have had COVID. Are likely to get long COVID or persistent symptoms. How long does it take? So that thing you spoke about of, is it more likely to turn up after three months, or is it more likely to be there from the get go? Because I assume you will have people you know have also had long COVID Or, assume on Facebook groups and so on. And I've interviewed quite a few, and you get both types. You get people who never really got better and are still just trying to get through and you get people who felt quite a lot better went back to work and then I say, had a crash, but we don't have a good sense of which one is the most common, or are they about equal and so all this kind of the nuance of long COVID, I think we'll get a better idea of will you be able

Jackie Baxter  
to get an idea of which age groups and genders are more likely to have each kind of type,

Speaker 1  
hopefully. So if we recruit 200 people and in the unlikely event that nobody gets long COVID or persistent symptoms, then no, we can't. We can't make any conclusions on anything, obviously. But if we get 200 people and a substantial proportion get on COVID, then we can start to make some assumptions about, well, it's more likely to occur in women than men or women of a certain age. And then we can start kind of tracking it. We can do some of that from the website as well. It's not as strong data, but the questionnaire on the website includes kind of gender, height, weight, socio economic status, all that stuff. So we can start to make some of those predictions from the website. Although, as I said, that method of data collection is always slightly limited, because you're assuming that people are telling the truth. People are telling the truth. It's amazing that sometimes people lie about their weight, but there you go. No, no. People give their time. I am joking, but it's just not as strong data as the prospective stuff, so we'll need both. Yeah. I mean, that's the aim, right? The same is to try and answer some of those questions. Whether we get to do it as a different

Jackie Baxter  
thing will be right back. I'm interrupting myself for a second to tell you about long COVID breathing. The Fabulous Vicky Jones and I have teamed up to bring you long COVID breathing. We are both passionate about sharing our expertise and experience of the breath and how incredibly helpful that can be with long COVID We've worked together to develop a course that is specifically tailored to those with long COVID It's a six week course with 12 sessions, all delivered online. The community feel and learning that we're all sharing is such a joy to find out more information and to sign up for our courses, workshops and other shorter sessions. Please check out the link below long covidbreathing.com or email long covidbreathing@gmail.com to start your breathing journey with us.

Jackie Baxter  
Oh, I think you touched on this earlier that we now know that long COVID can last an awful lot longer than nine months for quite a lot of people. Assuming you do get enough people, would you keep tracking them after the nine months, if they still have symptoms, probably

Speaker 1  
it's dreadful. But it comes down to funding partly. I mean, once people have got the app and they're filling in their symptoms every month, and that's fine, and we'll keep collecting that as long as makes sense, the issue comes when we then need to extract and analyze and spend time on the data, and that's where we need a little bit of help. Funding, I don't know. I suspect that the CSO will be quite keen on that. If the data looks like it's going to be useful, as always, if the data is useful, people are usually keen on trying to find the answer, and particularly since it wouldn't be super expensive. It's not like setting a study up from scratch, all that stuff's already there. It's just some funding to help do the analysis. So yeah, I think we would be keen on doing it. Doesn't cost us anything to carry on collecting the data, so we'll probably carry on doing that, because it should just happen in theory, if it makes sense to reanalyze the data. But we'll do the best we can, and if we need more funding, then we'll go and shout at the CSR and see if they'll give us any more. They've been very good so far. I shouldn't say shout at them. They've been really good so far. That's brilliant. I think

Jackie Baxter  
we forget that actually setting the study up is probably, I don't know if it's the easy bit, but there's an awful lot that goes on beyond that isn't there with the sort of crunching data an

Speaker 1  
awful lot. I mean, the app development takes an awful lot of time and just checking it and making sure that it's robust and you can collect the data that you want, and it's secure, and all that stuff. So that takes a lot of the time. So going from nine months to 18 months would not be double the cost. That makes sense in terms of getting funding for a study, would be an awful lot less than the original cost, because all that development stuff's done.

Jackie Baxter  
So I think we've already talked about what you're hoping to gain from the study. You know you can hopefully be able to pick up on patterns and pattern how symptoms develop. And I'm sure you mentioned avoiding the push and crash cycle, because so many long COVID softwares seem to have this sort of cycle of relapses where they'll start to feel slightly better, and they'll think, Oh, brilliant, I'll come getting better, and then they'll push it do too much. I mean, I do this all the time, and then you end up on the sofa for a couple of weeks, you know, thinking back to square one, yeah.

Speaker 1  
I mean, that was kind of the link between the CSO study and the NHL one. But again, one of the reasons I like that the mobile app as a way of collecting data is I don't know of a better way to try and get that predictive information. So pick something around for anyone listening. I have just made this up, so it's not true, but let's say, for argument's sake, as you approach a crash cycle, your resting heart rate increases. Let's say that would be really useful information to know, because then you could track your rest and heart rate and notice it's gone up by 10 beats over the last week, and maybe you need to change what you're doing so that you don't fall into a crash site. There's no way to get that data if you just take measurements at the start and the end of the study, because we don't know when people are going to have a crash, and if people do have a crash, you can't really realistically expect them to go to a clinic or somewhere, just so we can take some measurements off them to see what they were like. And even if they could, it's probably too late, because we want to know what happens, kind of in the week before the crash, yeah, leading up to it. And so for this ambulatory one of the things I'm really interested in is we might not find anything, right, but other things that we find that tend to happen in the seven days, 48 hours before someone reports a period of week post exertion or laser crash, right? And if there's something there, then that would be really useful, absolutely.

Jackie Baxter  
So it's so new, isn't it, we

Speaker 1  
literally, really don't know an awful lot other than it's a thing and there are these symptoms associated with it, then we start to run into difficulties. So

Jackie Baxter  
maybe we should move on and talk about the second study. So this is the one. Are you able to just explain about how the study came about? So I

Speaker 1  
need to go back a little bit. I said it was early in lockdown, so not long after the initial lockdown, so in March 2020, again, there was a call from the CSO for research to do with COVID in general, but also to do it lockdown. It wasn't COVID specific. And we had a study, again, funded by the CSO, to look at improving physical activity, or maintaining physical activity during lockdown in older individuals. That's what we were particularly interested in. And so we developed kind of a framework where we would give people Fitbits, and then we would have our own app that sat on top of the fitbit app, and that let them set a goal and send messages when they hadn't met the goal, and do some behavior change psychology stuff. I'm not a psychologist. We just lump it under just psychology stuff, but let's do some behavior change approaches that we're in control of. One of the things that things like Fitbit is you can't control the app, so you don't know what research underpins any decisions that the app makes. So we need to kind of use the Fitbit to track activity, but not to do any of the behavior change, and then we use our app to do the behavior change stuff, because we know what that is and where it comes from. So long story short is that means we had a framework that let us track activity and send messages to people on the back of that activity. And then early part of this year, there was a call by the NIHR for studies specifically looking at long COVID And by that point, it had become clear that a real obvious symptom was this post exertional malaise. That's PEM, and we were trying to work out how we could use the framework that we developed to try and help people avoid that to pen. So that's kind of where it came from. And the upshot was, we figured we could track people. So one of the ways people try and avoid pen is they track their own heart rate. And that's kind of, that's where the pacing idea comes from. And we've came up with. Way that we could kind of do that for people, and then in the same way in the first study, we would send alerts when people hadn't met their activity goal. This is kind of flipped the other way around in that we don't have any activity goals. You're trying to avoid doing too much, and if your heart rate is high for too many minutes in the day, then we'll send you alerts to say your heart rate's been high for and high is different for you, and it would be for me, and it would be for someone else. So it's individualized. It's not just we've set a blank out, but we can send a message to an individual, saying for you, your heart rate has been this many minutes above what you really should be looking at, and then maybe plan what you've got to do for the rest of the day. It's not really a behavior change, as in, telling people what to do, but it's more just giving them information and taking the cognitive load off them in terms of managing that side of pacing. So I

Jackie Baxter  
think a lot of people with long COVID will have come across pacing. It's, yeah, definitely something that people are very bad at.

Speaker 1  
That's kind of one of the things. If you look into the pacing advice, to me, the pacing advice makes sense, but I always imagine to someone else, it doesn't, because it says things like, try and estimate how much energy you need to use today and how much energy you've used so far, and try not to exceed a certain amount of energy. And they're just really difficult things to try and keep track of. They're not concrete concepts, right? How much energy you've got for today, I'm not entirely sure how much energy I've got sat here. And then you add that to if you've got kind of brain fog associated the long COVID, then just kind of trying to track that's difficult. If you have a crash, then what do you do? You try and track what you did in the days beforehand so you can modify what you there's an awful lot of decisions wrapped up in what seems like a fairly simple request of just trying to make sure you don't do too much, which isn't a great way to describe it, but it's much more complicated than that, once you get into the weeds of it, I think that's kind of what I'm trying to

Jackie Baxter  
say. I find that my energy levels are different day to day, even hour to hour, so it's a really difficult thing to do,

Speaker 1  
very difficult. And then my issue with it is, if you have a crash. It's not quite clear what you're supposed to do. So you're supposed to say, Well, I was trying not to use more than 70% of me energy, whatever that is. So should I try not to use more than 60% I'm not sure most people are sufficiently sensitive to go I know the difference between 70% of my daily energy and 60% I just don't think that's the thing. I think it's much harder than people think. And then, as I say, you add cognitive dysfunction on top of it, and suddenly you've got a thing that might help. It does help, no question, pace and help. But it's just really difficult to implement, and there's no really good advice, or there's not much really good advice.

Jackie Baxter  
I think you talked quite a lot about how it works. How are you recruiting people for this?

Speaker 1  
When we do finally start recruiting, got, as I say, long COVID Scotland initially, and again, initially. This is for people with long COVID In Scotland, mostly for logistic reasons, in case we do need to get them into the lab. But the intention is that we don't need to. If recruitment is a problem, then we can always widen out to the UK. I suspect it isn't going to be an issue, because I've had lots of emails with people saying, I've read about your study. I would really like to take part when it's up and running. So I don't think it's going to be an issue for recruitment. And again, this isn't one like the last one of phase three and the other study where we have to get people who've not long had a COVID infection. This is just any we can recruit people who have persistent symptoms and they want to use pacing to try and manage it better. That's the other thing that's worth just mentioning, is a patient is just a management technique. It's not an attempt to fix it or to cure it. It's just a way to try and manage the symptoms better. And if we can manage the symptoms better and maybe people have fewer crashes, then that creates a little bit of headroom where they can start to recover properly, maybe at worst case, it helps you manage the things that you have to do better, even if it doesn't help you recover faster.

Jackie Baxter  
Yeah, because if you're laid out on the sofa, we'll be right back. Hey there. I'm just jumping in for a second to see if you're enjoying this episode. If you're finding it useful, maybe you would consider sharing it somewhere, a friend, a group, or even on your Twitter feed. If everyone was able to share just once, we'd be able to get this information out to even more people who really, really need it. So please consider sharing somewhere if you possibly can. I hope you enjoy the episode, and thank you so much.

Jackie Baxter  
Done too much today before you can't do your washing or make dinner or look after your children or whatever it is that people absolutely have to do,

Speaker 1  
no question. And there's things people just have to do. You know, if your kids are at school. You have to go and pick them up. School gets quite cross if you don't. I tried and they phone you. I didn't. There are things people just have to do and so, so our goal, really, I guess, is if we can help people manage the things outside of the stuff they have to do, then maybe we can just create a little bit of headroom and stability so they can cope with the things. That they do have to do. That's kind of one of the aims, I guess. So these

Jackie Baxter  
people that sign up for your study, they get the Fitbit and they get the app. Is that kind of say all it is that sounds incredibly insulting. That's not

Speaker 1  
I've spent the last four months writing the app, so I will pretend not to be offended. Oh

Jackie Baxter  
no, I've really done it now. I meant more the relative simplicity of it for us as a positive

Speaker 1  
again, it's kind of in two phases. It's a randomized control trial. So we will recruit people, and this sometimes aggravates people, but half people will get just standard patient advice and essentially left to their own devices. They'll get a version of the app, but it won't have any of the messaging built in, and it won't track the heart rate, but it will allow them to fill in their symptoms once a month, and then the people in the other half of the cohort will get the intervention, so they'll get the patient support and the messaging, and there's information built into the app. So for example, one of the things you can't do direct with the Fitbit is say, Well, I want to know how many minutes today I've spent with a heart rate above 102 the data stored, but it's difficult for you to pull that out as an individual, because Fitbit want to show you in the same way. So what our app does was it will pull your data remotely for you, and whatever your kind of threshold heart rate is, whether it's 102 or 98 or whatever, it will tell you how many minutes you've spent today above that, and also tell you how many minutes you spent above that yesterday the day before, so for the last three days. And so it takes over the tracking for you, and you can just look at the app, I guess that's the aim, I think, is to take away some of the cognitive load, do the pacing for you, but it tries to help you with managing what have you done today, and what have you got left to do today? That kind of thing. At the end of it, the people who are in the control group will get an opportunity to run through the study again. So what we'll do at the end of it is review it, work out what could have been done better. So could the messages have been better, or could the way that we presented the heart rate data been better? So we all try and improve it. And then the people in the control group who didn't get the intervention first time around, they have an opportunity to run through the study again. So everyone gets to run through it, not necessarily first time around.

Jackie Baxter  
How long are you planning to

Speaker 1  
run each sort of bit of so it's six months. People have the pacing support will be there for six months. We've got another month or two until we start, and it'll be six months for the initial cohort to run through. We don't recruit everyone in one go. We recruit them kind of so many per month. So that'll actually take the best part of a year to complete. And then move the other group will start there six months because we've already recruited them, they can start in it doesn't. We're not recruiting them over months. We recruit them probably in two grows and get them started that way. So the second phase is quite a lot faster than the first, because we've already got kind of a list of people, just case

Jackie Baxter  
of, sort of flipping them over, almost, isn't it? Yeah, and taking away the need for the facing the physical activity is, as you say, you know, a huge help, because it's one less thing to think about, isn't it. What I find is I never thought about it until I got ill, was how much this mental activity also requires so much energy that is going to be much harder to track as

Speaker 1  
a tip, that's kind of the Holy Grail, if I'm honest, in terms of not just long COVID, but there's a whole research area of physical activity, and a discussion about what sedentary activity in the physical activity world is called sedentary for long COVID, Bucha, or what counts as rest, is rest reading a book. Or for some people, it might be a book. For some people it might not be. And for some people, it will depend on the book is some rest watching telly is breast only rest when you're lying down, if you're sat in a car, going somewhere and you're anxious, is that rest? So it's not necessarily straightforward, and when we started the project, there was a kind of an online conversation we had that there's no doubt, even if this thing works as well as we could hope, it's nowhere near the full answer, because we can't track how much time you spent reading and how tiresome that was and how much that affected you. But I think again, it comes back to our idea that, well, if we can track the stuff that we can track, and we can help manage the things that we can help with, and at least we can try and create some headroom so that reading a book isn't as exhausting as it would have been otherwise. Outside that does become really difficult. You know, just trying to track, to do it remotely, because in my head, I'm all this stuff has to be done remote to be scalable, to be able to roll out to lots and lots of people, it has to be able to be done remotely. And there's just no way to know the difference between lying down looking out the window and lying down reading the book. I mean, they're very different activities, but they're very difficult to remotely get a handle on which is which, or even down thinking people have got long COVID And they're concerned about their jobs or their income or their mortgage, all that stuff takes cognitive load and is exhausting. I can't track that. I would love to be able to, but I just can't. I can't yet anyway, so we're left with, well, we'll try and help with the things that we think we can help with, and maybe that will create a little bit of space so the other stuff isn't as de. Of as it might be. I guess that's the way to think about it.

Jackie Baxter  
Well, any anything that can be done to help is better than nothing. So yeah, do you see this combination of heart rate tracking and communicating messages? Is it something you rolled out to more people in the future, you know, to people with semi and chronic fatigue and things like that? I've got

Speaker 1  
a few different answers to that question, I would dearly hope so. All right, one of the plans in the future is, if it is useful in long COVID, then we would love to see if it works in me, CFS, those kind of conditions, there are some small differences. Again, the data is not great, but for me, about of PEM, using something called the Canadian criteria, has to last for 14 hours to count as a bout of post exertional malaise. And in the handful of studies that we've got, about 40 to 50% of people at long COVID report PEM lasting 14 hours or more. But nearly everybody else reports what I call PEM like symptoms, which is bouts of PEM that are basically less than 14 hours. So it's anywhere between two and 1012, hours. So there are some small differences. So I don't think we can just assume that if it is beneficial in long COVID, if it does help people with long COVID, that we would get exactly the same benefits in people with me, I'm not sure we can. We can say that, but yes, we would love to roll it out and see if it works in those other groups as well. So the second part of that is actually particularly long COVID And certainly in me, CFS, we've initially started out with heart rate, but there's a couple of issues with that. And one of the reasons we use a Fitbit is because it gives us heart rate that we can pull remotely. That's fine and but it gives us secondary measures that we can use. So for some people, heart rate isn't going to be a good measure. So certainly people listening to this will have heard of pots, so postural tachycardia. So if people suffer from pots and they're moving around quite a lot, heart rate becomes not necessarily a great marker of how much activity you're doing for people where heart rate isn't a good measure of activity. So particularly for parts people, and we will track steps instead. So we will work out how many steps a day you do if you have a bout of pen, we'll work out how many steps you did in the sort of three or four days before you had the bout. Because we're aware it's not immediately before necessarily, right? So if you have a bout of pen, it might be from two or three days ago you did something and that triggered it. So we will track what you did for a couple of days before you had about a pen. And that goes for heart rate and steps. But if you're a person who, for whom heart rate is not a good measure, then we'll try and measure steps. And again, I think that might be useful, particularly in people me and CFS, because there's an awful lot of those people have pots and in whom their heart rate jumps around an awful lot. And if you're trying to track how many minutes you spent with the heart rate above 102 because you assume 102 is the threshold above which you're doing too much. Let's say then if you've got an unreliable heart rate, that's no use. So we need to just a different way to try and track it. So they're all just, I guess, just ways to try and work around the issues that come with the condition, but that still allow us to support attempts to try and pace the things that you have

Jackie Baxter  
to do, so you're able to sort of tailor it to each individual. Yeah, we

Speaker 1  
try and tailor it as best we can. So if it is heart rate, your heart rate, as I said, will be different to someone else's, and your maximum amount of minutes that you need to stay inside of will be different to someone else's. And if heart rate's no good for you, then we will track steps, and we'll work out, how many steps do you do a day when, let's say you've had a week when you've had no pen, and we'll say, right, well, that's your maximum amount of steps. You should try and stay within. If you stay within that and you have another bout of pen, then we might adjust that down a little bit to try and reduce the amount of exertion you've undertaken. All of that is bracketed by absolutely aware that there are other types of exertion that we can't track, but we're just trying to manage the bits that we can. So

Jackie Baxter  
you said to six month track, plus the setup time and the other people. When are you thinking that you might get some data from this one?

Speaker 1  
So we should have some data after the first group finish the six months. So at the end of the first six months, then we've have a group of people who've had standard pacing advice, and we'll have a group of people who've had pacing support through kind of activity tracking so, and I think that occurs somewhere around March or April. So we're hoping to have some data out around March or April, maybe a month or so after that, once we the number crunching about, do people who get the support have fewer bouts of PEM, or if they don't, are they less severe? Do they not last as long? So what we're trying to track all that, and we're hoping sometime March, April, next year, we should have some data. Well,

Jackie Baxter  
then what might be really amazing is if we can get your podcast, when you get some results,

Speaker 1  
see what you find out. That would be really useful. Yeah, that would be great. Is there anything

Jackie Baxter  
else in the pipeline for you? Or you sound a bit occupied with these

Speaker 1  
two I am up to well at the moment, although that said that I'm interested over a colleague who's he's a physiologist as well, but is interested in pediatric and whether we could modify the approach that we've got to work with children might be interesting, because I think long COVID in children is becoming a bigger issue. But I think. Amount of support is much less. I don't think people have a good idea of how to do patient in children is really difficult. I mean, physios and so on, and MECFS will have been doing it for a long time, but the support for patient in children is much and I know from my mind when it was just trying to pay kids would be disastrously difficult when you're an adult, I think. But that's kind of my point. I think that it's really difficult as an adult. So you get all those difficulties, and you say, right, well, now you're six, and it's just it's really difficult to manage. So we need to get this up and running. And probably after Christmas, we will start to think about, is there a way that we could approach helping younger people, whether that's adolescents or children, children who've got long COVID and see if there's ways we can manage that. I mean, there are trade offs. They're happier to wear kind of Fitbits and so on, because they like the technology, but they're more likely to forget to open an app and update it or do any things that will fill in the questionnaires and that kind of stuff. There's challenges in terms of how we adapt it. Yeah, that's probably one of the things we'll look at next that. And I think the next stage is if it is useful, and we won't know till next year, seeing if we can do it in me would be like the logical next step. I think Fantastic.

Jackie Baxter  
Well, thank you so much for joining me today. It's been absolutely fascinating. Good luck with getting them off the ground, and I'll be really excited to hear some results. Thank you so much to all of my guests and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buy me a coffee.com. Forward slash long COVID pod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast. It's available on all the usual podcast hosting things, and you get in touch. I'd love to hear you.

Transcribed by https://otter.ai