04 - Research Projects & the Glasgow Science Festival

Episode 04 of the Long Covid Podcast is a conversation with Chris White & Jane Ormerod from the Long Covid Scotland Research Group. We talk about the importance of getting involved in research projects, how they can benefit you and some of the projects that are currently running.

We feature the Glasgow Science Festival which is an annual event in Glasgow. This year it features a large online segment on Covid & Long Covid. It's a huge and fascinating piece of work and has unfortunately now been taken down, but the case study videos are still available HERE

Other research projects:
www.nihr.ac.uk
CSO research projects

To get involved & take part in research:
www.longcovid.scot (Scotland)
www.longcovid.org (UK)
http://longcoviddeutschland.org (Germany)
If you live elsewhere, take a look in LC support groups for info, or drop me a message.


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(music credit - Brock Hewitt, Rule of Life)

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 today's episode of the long COVID Podcast. I'm really excited to introduce my guests today before we get started. It's just worth noting that although most of the studies we are going to speak about today are in Scotland, there are equivalents, or many, many other studies also happening in the UK and around the world, wherever you are listening from, if you're UK, I've put a link to the UK group in the show notes. And if you're worldwide, I'm sure to quit Google or get in touch with me and I can point you in the right direction. I hope you enjoy the episode. Here we go.

Jackie Baxter  
You so I'm very excited to have Jane and Chris from the long COVID Scotland research group on the podcast with me today. To start with, can we just get you guys to introduce yourselves, who you are, and what did you do before COVID?

Jane Ormerod  
I'm Jane omrod. I became ill with COVID 19 in March, 2020 and 17 months later, I'm still unwell with a range of symptoms that have changed my life. Prior to COVID, I was involved in a range of voluntary work in the local community and health and social care. Having previously worked in the health services for 40 years before retiring about September last year, I was desperate for support and help, and I joined long COVID Scotland Action Group. I was looking for support, as I've said, but also I was looking for something that could help things move forward, because I didn't think there was a lot of action going on around well, what is long COVID? How do we treat it? So I got involved, and after a period of time, we started to evolve ourselves into subgroups. And I gravitated towards the research subgroup, because it's a real interest of mine. I was involved in research when I worked in the health service, so I co chair the research subgroup with Chris, and we've got about eight to nine members, and we've gradually got involved in more and more things. But I'll let Chris come in, because I'm sure he's got loads to say about that.

Chris White  
Thanks. Shane, morning. Jackie, yeah, my name is Chris White, and before all of this, I have worked the last 20 years in mental health, I had a pre existing mental health condition, and I've been doing that for around 20 years, either supporting people or increasingly, kind of looking at how we deliver services and working with universities and academic groups as well. So so I had a link into academia and research. But from March last year, everyone went into lockdown. Instead of kind of seeing people face to face, I started working from home. I have a wife and a daughter who, kind of September last year, started going back to school. My wife's a teacher. My daughter is a secondary school. So having kind of been locked down for six months, we were back into become particularly because of a child and a teacher a risk of COVID infection, and all of us got a COVID infection last October. To be fair, the actual COVID infection wasn't that bad for us. It was very much along those kind of severe flu type symptoms for a couple of weeks, and afterwards, it's kind of well, that's me done. I've had my COVID, and let's just get life back to normal. I was still working from home. My daughter went back to school. My wife went back to school. They seem to be recovering fine. I went back to online meetings and was falling asleep in meetings. I couldn't remember what we've been studying. Meetings in the run up to COVID, I had been going out for a 3040, minute walk before starting work in the morning, and it just wasn't being able to manage that. That continued on right up until December. I thought there'd been a little bit of an ease. So again, to. Mind going back into work, but got really, really tired at anything, and that's where I kind of went back to my doctor and said, What's going on here? And that's when we kind of start getting into post 12 weeks. Some people don't recover, and we now call that long COVID,

Jackie Baxter  
yeah. So it's a fairly familiar story, people not recovering when we should have done and you've both now been ill for an awfully long time, but the fact that you've managed to use some of your skills to try and help out, that's fantastic. And you've got involved in the research group, which is playing to your strengths. So shall we talk about how the research group came about, and what do you do? Yeah,

Speaker 2  
so one of the things that I was involved in post all of this is being part of a patient and public involvement group at the institute of health and well being at Glasgow University, that's a general involvement group, a patient group looking at commenting on health related research studies that might be coming up and around January last year, we started getting to that point where research funding started making money available for studies around long COVID. We moved on from just COVID studies to well, actually, why aren't some people getting better? And a couple of those studies came to the group at Glasgow University. At that stage, there was only myself within that particular group that had had COVID So to be able to comment on studies. And also we knew that not everyone has the same range of symptoms. Long COVID has a huge range of symptoms. And depending on who you are, depending on any other underlying health conditions, how old you are, whether you're male or female, long COVID can have different impacts. So that kind of suggested that we needed to go back to a long COVID group and say, Listen, are there some people who are willing to get involved and invested in supporting emerging research projects, not just getting on board of joining studies, but actually helping kind of form what those studies might look like. And that's where we got this group of kind of a core group of 12 people. But sometimes a university will want to do a focus group so we can get other people involved. It might want to look at specific issues, so we can ask, are there people that have these particular symptoms to be involved so that we can begin to build better research projects?

Jackie Baxter  
Fantastic. So able to use your lived experience to help the people doing the research is a fantastic idea. So you said that there's a lot of research projects happening now. You know, thankfully, long COVID has now been picked up on by a lot of people, and there is a lot of research happening. So maybe we should talk through some of those research projects. I'm sure there are far more that are happening than what we can talk about, but we should mention some of them.

Speaker 1  
I think you're right. There's lots of studies started now, and it's good. I mean, in Scotland, and I'll talk predominantly about Scotland. I mean, there's a lot of information on the NIHR website, nihr.ac.uk about UK wide studies, as well as the Scottish studies, Scottish ones that we're involved in. And I'll apologize now, because these sound like quite strange names, but there is a and it's a habit in research studies, you'll be familiar with it, to call them by a name that recognizes, perhaps a lengthy sentence or something that the study is about. And one of the ones that I'm involved in, certainly, is the local rise study, and it's looking at rehabilitation services for long COVID patients across all health boards in Scotland. Now, that study has been underway for quite a time, and I'm on the management group for that. And I mean, that is really good. It's such an interesting study, and has really picked up on some of the things already that we've known for a while, that there's no cohesion across the health boards around services for dealing with long COVID. So we're early days in that study, but it's going to be interesting because it will feed into developments for treatment and rehabilitation around long COVID in the future. One of the other ones is the redirect study, and it's a remote intervention of weight management for the benefit of people living with long COVID, and that is a really interesting study as well. I mean, Chris, I think it's very close to his heart, certainly because of various things about how he's dealt with his own health in the past. But I think for anybody, particularly, a lot of people living with long COVID have had problems with their weight, putting on weight, losing weight, and this study really aims to see if by intervening around the diet, you can improve symptoms of long COVID for patients. And that's just starting that study, and will be underway for two years, a third one that I'm involved in. It's a study around pacing. And pacing sounds a strange term, really. But it's a well known term around balancing activity and rest for people who are having problems with energy and undertaking just normal activities. Never mind if you've got long COVID. It could be anything around post viral infections. But the study is going to use an app to link into a fit bit that the person will wear, and it will track their activity and it will monitor their heart rate and compare their activity levels and their heart rate. And messages can be then sent by the research team back to the participants say, Oh, hold on a minute. You've done so many 1000 steps. You know your heart rate's this. So it's a really useful study, and I'm quite excited about that, because I think having challenges around pacing myself, I think it's a really interesting innovation to help people manage pacing, which is really generally poorly understood. There are three studies that are underway. There are a couple of others in the pipeline. There is one that we're just in early stages with around reproduction and reproductive health in long COVID And the researchers are just starting to shape up what that study is going to look like, so we'll be working with them. And quite often, what we do in the early stages, we advise on a range of things, language in the research application, its ability to interact with the participant, bearing in mind that people with long COVID, their span of attention, their ability to focus in on words, written, listening TV, they tend to be limited. You've only so much energy. So any study really got to take that into account. So we advise on things like that. We also advise and we test out apps that the study might have, and we test out questionnaires as well amongst our members. And we give feedback to the researchers, because there's no good having a questionnaire around helping long COVID people if they can't answer the questionnaire because it's too long, it's too complicated, even colors, different words, they just don't fit sometimes. So we give our feedback around that sort of thing to researchers.

Jackie Baxter  
Yeah, it's fantastic to get an idea of the studies that there are. Some of these studies are going to feature on the podcast in the future. I've already spoken to one of them, and I'm hoping, hoping to speak to some of the others as time goes on. So that's fantastic. Did you have any more to add to that?

Speaker 2  
Yeah, kind of important to kind of have a think about what is around and are there things that suit you? So Jane mentioned NIHR. We're actually really good as a society of using acronyms. NIHR is the National Institute for Health Research. It's the UK is largest funder of health related research. But there are other big funders around in Scotland, there's the Chief Scientist Office, and there are private funders, pharmaceutical companies, quite often, have a have a big interest in research. The other thing that's there, and Jane kind of touched on is, whilst we don't know an awful lot about long COVID, actually, we kind of know quite a lot about some of the symptoms and similarities. So for some people with long COVID, fatigue becomes a real issue after any kind of walking or exercise. Actually, there are other conditions where fatigue becomes an issue. So some of the studies look to use some of the learning from there, or actually might even improve learning in other areas. Again, Jane talked about a study that's just about to start off around reproductive and menstrual cycles. We know that actually there are some issues that are particularly affecting women, and therefore it's important that we bring in a group of women to explore what those issues are. No point a group of guys kind of going well, this is what I do about those particular symptoms. So broadening that group, and one of the studies that Jane mentioned around weight management, we know that people who have issues like diabetes, where weight management might be an issue that takes some of its learning from what we know about supporting people with diabetes type two. I had diabetes type two until about 18 months ago, and through a really heavy weight management program now don't have diabetes, I'm in complete remission. And when those things happen, it becomes better able to manage some of the symptoms that might be around those conditions, because cures are often a long, long way away. Symptoms are with us today, and it's symptoms that have the biggest impact on our lives. So actually, some of the research that's going to have a quicker response and a quicker improvement for us, improving symptoms is the starting point for enabling people to feel in better control of their life and getting life back on track and to be doing the things that we want to be doing.

Jackie Baxter  
I love that idea of sharing, learning. You know, just because something works for one condition and there's so many crossovers, as you say, if you were able to improve one of your 25 symptoms, then it's better than improving none of them, isn't it. You know, any improvement is good, even if there is no cure as yet. So yeah, I'll put links to all of the studies that you've mentioned and the NIHR website in the show notes. So if anybody wants to go and read up on any of them in more detail than than they can do, has the pandemic and the fact that people are far more connected online now has that actually helped some of these research studies,

Speaker 1  
I think, very definitely. With more studies taking place, we need more participants and reaching people, giving them information, asking them to be involved. The fact that more people are online, it seems to be more an accepted way of meeting with people now. Then you hope that people are encouraged to join. Obviously, there are people who don't have access to it, and we do miss those people, but I think the long COVID group, the Scotland group, I mean, we've over 400 members, but the English group, and some of the bigger international groups, they've got 1000s of members. So reaching those people, first and foremost, they are your potential participants, I guess, for studies. So it is how you actually reach them and what you say to people, because I think there is quite naturally, a bit of fatigue around asking people to be involved in things, and so we have to think quite carefully about how you phrase it, what you ask them to do, and what's in it for them, because there has to be something in it for them. Being truthful, though, as you say, there might not be a cure in it for them, but it could improve just if it improves one symptom, then I know myself, if one symptom improves, then the knock on effect on other symptoms potentially is there. I think in addition, you know, for people thinking about, well, why should I get involved? Well, there is an interest thing and there is a development thing as well, without a doubt, because for me, it focuses your mind on something else but yourself. Because I think with the lockdown and long COVID combined, you have a lot of time to think about yourself and your symptoms. So actually getting out of that, for me, a little bit has been great, even though it's a challenge balancing activity and rest, but it is a development thing as well. I mean, I've learned so much through speaking to Chris and other people about patient and public involvement, how we can actually use our lived experience to better benefit the wider group of us. And that's not just the people that have long COVID. That's the researchers. That's the health service in general. You know how we can use our experience to benefit everybody going forward? And for me, that's a real driver, urging people to get involved and bring what skills they have, because we are people with loads of skills that they had previously, and unfortunately, some people are not working anymore, so they might want to use those skills to help the wider good.

Jackie Baxter  
Yeah, that's such an important point. You know, people are not able to be active in the way that they were before. You know, I would normally spend my free time out running or cycling or up the mountains, and I can't do that anymore. So I certainly have found getting involved in things has given me a bit of a purpose. And when you're not working, that can be something that we don't have, isn't it? So, yeah, yeah, use your skills for something good. And

Speaker 2  
we've also changed the research community. I was involved in patient and public involvement before. First of all, let's just say that, yes, there is a barrier in that loss of engagement at the moment, is happening online and by computer screens and search and so for some people, that is a barrier. However, participation in research was full of barriers beforehand, and actually moving to an online format overcomes more barriers than the barrier that's created by virtual existence. So in the past, meetings would have happened in person during the daytime in a city attached to a university. So Dan's in the north of Scotland participating in studies at Glasgow University, at Edinburgh University, at University of West Scotland, she wouldn't be able to do that. You can't physically do that, even if you're kind of close by, if you live in a coastal or rural area, getting into a city is not easy, even if you drive. But do you have that free time? What about women with childcare? And also, we're talking about a group of people who have health related symptoms. I live within a city, but I'm at the opposite end of the city to the university, so I need to travel into town, and then I need to get public transport ed to the university, and then I would have a 15 minute walk. Can I do that with long COVID The reach of the research community to be able to engage with patient groups has massively increased. And also it enables people to say, well, actually, I can only come into a meeting for 1520 minutes, or I can't actually come into the meeting, but I can comment on papers. There is a wider way that we have changed how research happens.

Jackie Baxter  
We'll be right back. I'm interrupting myself for a second to tell you about long COVID breathing. The Fabulous Vickie 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 are 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, you

Jackie Baxter  
Yeah, it's much more accessible, isn't it, to everybody, which I think has to be a good thing. Jane, you commented earlier on sort of things that you're doing to help out with the research study, and you mentioned looking at some of the apps and proofreading almost some of the questionnaires to make sure the language was accessible and using your lived experience. Is there anything else to add to that?

Speaker 1  
I think the other thing that I would add to it, and it struck me while Chris was speaking around the research community and the patient and public involvement, you know, I think the whole balance of patients and health professionals is becoming more equal through increased access to participation and research. You know, volunteers and participants are gaining in confidence through being able to participate in research, and I think that sends a message across the research community as well, is that we do need patient and public involvement, even to those who were in the farthest reaches of the research community who thought they could probably do without it. I think that is no longer the case. We can be involved, and it gives us a confidence as well. And also, when researchers start to see that our comments are worthwhile, they're important, and then it just alters the power balance. If there's any such thing, there may not have been a spoken one, but there was definitely an unspoken one, and that has changed and will continue to change a thing for the good for everybody. What

Speaker 2  
do we research? Academic researchers, medical researchers generally, kind of have particular interests which direct where they go with their research. And sometimes we've been able to come back and say to researchers, well, they're not the questions that I would be asking, or they're not the symptoms that are important or okay if you want to do that, have you considered the impact that this will have on this group of people? It's not just we're glad to be at the table and thank you for inviting us and agreeing with everything that's going on. It's having a critical voice and being part of those discussions Absolutely.

Jackie Baxter  
And yeah, you can't have one without the other. Can you the the scientists are important, but the lived experience and the knowledge of your condition is just as vital. The Glasgow Science Festival is something that both of you have been involved in. So maybe we should just talk a little bit about this, because it looks like an absolute huge amount of work and it's really impressive. So could you explain what it

Speaker 2  
is the Glasgow Science Festival project came through our connection with Glasgow University, with the universities that we have been working with, we wanted to really build a strong relationship across studies and to be seen as a valuable member, not just a group of patients, but actually a stakeholder group. And have that selling point that we're offering you something, and so building that relationship out of that Glasgow University each year hold an annual Glasgow Science Festival, which is usually done out in the community, taking science to community centers, to mother and toddler groups, to patient groups. So science isn't just something that happens within academic institutions, and science isn't just something that's done to you as a patient group, taking it out into the community to involve people, and that would have been the plan last year as well. And then last March, we all got told that we were going to get locked down. And I suspect that kind of, you know, everyone thought that was just going to be sort of a few weeks, and that wasn't the case. So last year, September came around, and the Science Festival kind of went well. We still want to have a presence. Glasgow University still wants to have that engagement with the city and the community. So have a look at what it could. Do via things like podcasts, videos, online seminars. When everyone went into lockdown last March, everyone kind of went, Oh, God, how do you engage with the world online meetings and podcasts and things won't really work, but actually they had to work, and people who had never been involved in a podcast or a video meeting or an online seminar ever in their life. We're doing zoom calls and such. So that gave them the ability to do that last year. This year was supposed to be a kind of hybrid event, and because we had this relationship with the university, there was the opportunity to say, well, let's do something around long COVID And take that conversation out in the community. Because yes, there are lots of people who have joined long COVID communities online. But when you look at the numbers of people within long COVID support groups on social media, for example, it is nowhere near the 75,000 90,000 people that we predict in Scotland have long COVID That means that there's an awful lot of folks out there that are not connected. And so it gave us that ability to make that connection. We already knew that we had studies kicking off. We had long COVID stories on video and search, so it's we can put out a message there, also kind of reaching out to that group of people who didn't get better and don't know what's going on, who haven't made those connections. So it was a good chance to broaden out that conversation, because we still have that narrative of unless you're old or have a serious health condition, you get COVID, and then you get better, and we know that's not the case, so we kind of wanted to readdress some of that narrative.

Jackie Baxter  
Absolutely the website itself, it's absolutely amazing, and I'll put the link in the show notes, and it really is worth a look. Can spend hours looking at it, and that will be live until the end of September. Is that correct?

Speaker 2  
Glasgow science festival site will still be online until the end of September. Some of the material that we've provided for that though, some of the personal stories are actually hosted on long COVID Scotland's YouTube page. So they will continue, and we will look at whether some of that material that that isn't already there can be archived or still made accessible in in other ways,

Jackie Baxter  
awesome. If that does get archived, I can change the link in the show notes as well, so hopefully anybody listening after the end of September can still access it.

Speaker 1  
I think again, it lots of learning through being involved in all of this stuff. I mean, for instance, I mean, we're talking about increasing zoom, increasing people getting involved in podcasts and doing their own videos and stuff like that. I mean, that's been a huge learning point for me. And you know, I think for anybody who is keen to tell their story, to share their lived experience, I mean, don't be deterred by videoing yourself or I mean, I was to start with but it's great fun, actually, once you get into it and you learn so much about it. So I think that's really good. And we welcome people wanting to get involved in activities like that, and involved in any of our activities, whether it's research, whether it's campaigning, advocacy, media, we're always looking for likely people to help us out with any of those areas. And if they want to get involved. They can contact any of us through long COVID Scotland, through our website. I think all of our details are on there, the people that share the main groups and our Chairman's details, then please drop us an email and you too can be recording yourself on video or inputting to research studies, adding your expertise be really welcome. There's a

Speaker 2  
real visual thing there as well. Part of that is like science is done by people who look like academics, people who look smart or wear white jackets, or people who do pieces on video look like newscasters and our presenters and professional people where at on the science festival site, on the long COVID information, there are links to three personal stories of people living with long COVID. Jane's talking about her experience of actually being involved in a research project. I'm talking about ways that people can get involved. So it's very much that visual thing of seeing people like me. So that research isn't an othering, it's for other people. And we're overcoming that barrier, because

Jackie Baxter  
everybody's story is valid, isn't it? It doesn't matter who you are, how you've been affected, you're still important. I think that's quite important. So you've just talked about how people get involved in research studies. So the best way is to get in touch with long COVID Scotland, either through the website, which I'll put in the show notes long COVID dot Scott, or through the Facebook group like that. Again, people can get in touch with me through the podcast, and I'll point. Them in the right direction as well. So with a lot of these studies now kicking off, there must be an even bigger need for participants. Yeah, I think that's really

Speaker 1  
important because of the nature of the group that we're dealing with. We've all got long COVID It's really important to share out the activity, because if we can't, then it means that people crash and burn, as it were. It sounds dramatic that, but you all know what I mean. If you've got long COVID, your energy levels are depleted after the smallest bit of activity. So we talked about pacing, but we need a wider group of people so we can share out the workload, and so we don't have people crashing and burning. We have people who are in for the longer haul, and they can pace themselves to that. And

Jackie Baxter  
there's got to be a bonus to getting involved as well. Like you say, if you're ill, you've got limited energy, limited abilities. You might think, do I really want to get involved in something else? But there's got to be advantages to being a guinea pig as well.

Speaker 2  
There's that kind of thing of needing a range of people a because of Jane said, some people kind of crash and burn, and we've all got health conditions so that we will have good weeks and bad weeks. So having a bigger community means that we can pull that backwards and forwards. Also, there are things emerging. Younger people with long COVID tend to look a little bit different. Symptoms look a little bit different to older people with long COVID. I really can't comment on what long COVID Looks like if you're 25 you know, if there's a study that's looking at long COVID and younger people, the best thing that myself and Jane can do is say, well, actually, we know a group of people who were in touch with long COVID Kids, for example. So if there's a study that wants to look at long COVID in 14 and 15 year old, we can say to academics, that's not me, but here's someone who can and the benefits a kind of generally, people want to do something and want to feel valued and important so that that's a Very simple, quick benefit. I want to feel as though I'm contributing, but there are other benefits. You know, one study will give you first access to an app that might help you manage your condition. Because what will help me? I want something to help me now. Well, actually, we don't have the answers, but we're developing the answers, and you can be part of that process of developing those answers, or with the weight management program, one of the things that that includes is weekly support sessions with a dietitian. Often people at the moment are kind of saying, I'm left on my own. I don't have any support, I don't have any contact. So through that study, there's inbuilt support, and there will be a period at the start of it where people will be on a diet supplement rate, which can actually be quite expensive because they're on a study that diet supplement drink will be provided free,

Jackie Baxter  
yeah, and you get first access to it, and

Unknown Speaker  
you get first access to it, yeah? So

Jackie Baxter  
absolutely, yeah. Lots of advantages to getting involved. What can people do to help or get involved if they don't have long COVID, say, a partner who's been watching this long COVID journey and they think, is there anything that they can do to help, to support or follow research studies at all.

Speaker 1  
I think we've debated that and talked about it quite a lot, and I think there's very definitely things that people can do around some of our groups. You know, we're always looking for extra help around admin. I know that it sounds very trivial, but it's really important, I think, for us to be able to have access to those sorts of things in all of our groups. But if people have a passion for helping out with long COVID, and if you've had a spouse or a son or a daughter that's had long COVID Or has long COVID, then you know, you know exactly what it's like to have long COVID, even though you've not had it yourself, so your experience is just as valid. And I think that will become stronger the voice from those people that haven't had long COVID But cared for people with long COVID. So we'd welcome them to our group to get involved in any range of activities

Speaker 2  
studies. Often want to have that voice as well. So there is a group of people with long COVID who have very, very severe symptoms that might limit their ability to get involved with things. And so if we don't look at how we pull that group of people in, those people most severely affected might not actually be heard, but the people who know most about that group of people and can still engage our partners, carers, mums, brothers and sisters, who can kind of go, here's what's going on. And also partners and carers have a different perspective on health. Someone will ask me, How are you doing today? And I'll say, I'm fine. You. And my wife will look and go, Hmm, yeah, maybe not, because our tendency is to kind of go, I'm fine, and I won't tell people totally the areas that I'm struggling with. So so having a partner's voice kind of goes, but what about when this happens? So that is a valuable source of information into the research community. The other thing as well is we want to know about prevalence of long COVID. So if someone's had a COVID infection, there are studies that have been going on since the very early days of COVID. And long COVID. Is the Zoe COVID study, which is an app based study, anyone can join it for any length of time, and it asks questions, have you had COVID? When did you test? Have you had a vaccine? When was your vaccine? Do you have symptoms? So at the point where you may have had COVID infection, you can be kind of like but I have symptoms today, and the next day reporting that you have symptoms, and the next day reporting you have symptoms, and for a huge amount of people, at some point they should say, Actually, I have no symptoms today, I'm recovered. We need that baseline figure as well, because that then tells us something about how many people continue to have symptoms, and is there anything different about that group of people who do recover within 12 weeks and those people who don't recover? So those people are still providing a huge amount of information that we can then go on and kind of go, Well, why am I different? How do we do something about that? It's all

Jackie Baxter  
important data, isn't it? Thank you both so much for your time. It's been amazing to talk to you, and really fascinating to learn all that you're doing. Please go and check out the Glasgow Science Festival. The link is in the show notes. And if you are interested, or even think that you might be interested in getting involved in research, if you're in Scotland, it's long COVID dot Scot, or England and Wales, long covid.org 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 long COVID podcast. It's available on all the usual podcast hosting things. And you get in touch, I'd love to hear from you.

Transcribed by https://otter.ai