62 - Nisreen Alwan - Professor of Public Health, Researcher & Long-hauler

Episode 62 of the Long Covid Podcast is a chat with the wonderful Professor Nisreen Alwan. We chat about her experiences with Long Covid as a first-waver, her ability to work and what made this possible. We also talk about social media, her experience of researching Long Covid as well as some thoughts about changes that should happen going forward.

TED talk

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, longCOVIDpodcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to, please consider supporting the show using the link in the show notes. If social media is your thing, you can follow me on Facebook @LongCOVIDpodcast, or on Twitter and Instagram, both @LongCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback, please do get in touch through any of the social media channels, or email LongCOVIDpodcast@gmail.com. I really hope you enjoyed this episode. So here we go.

Jackie Baxter  0:00  
Hello and welcome to this episode of the long COVID Podcast. I am delighted to be joined today by Professor Nisreen Alwan, who is a professor and researcher from the University of Southampton. She also has long COVID. So there's lots of fascinating stuff up for discussion today. So welcome to the podcast.

Nisreen Alwan  0:20  
Thank you so much, Jackie. I'm really glad to be chatting to you today.

Jackie Baxter  0:25  
So it's wonderful to have you here. To begin with, would you mind just giving a little introduction to yourself?

Nisreen Alwan  0:32  
Yes, sure. So I'm a public health doctor, and also a public health academic and researcher. So I do research in the area of public health. You know, I focused a lot on kind of maternal and child health in my research before COVID. And also around kind of what shapes health problems later in life, how can we prevent them really early? You know, also looking at health inequalities, you know, what shapes people's behaviors and, you know, environment in relation to health. So, yeah, I'm based at the University of Southampton. That's my job. And then I'm also a mother, I've got three children.

Jackie Baxter  1:11  
Amazing. That sounds like a really full life.

Nisreen Alwan  1:16  
So I just stopped in the hobbies bit, because to be completely honest, I don't have time. I don't have time to do anything else, you know, like, say, Oh, when I enjoy doing this, and that like, oh, just I just work and look after the children.

Jackie Baxter  1:28  
Amazing. Um, so would you be happy just kind of talking us through your experiences with COVID? And, unfortunately, of course, long COVID as well?

Nisreen Alwan  1:39  
Yeah, sure. So I got COVID in March 2020. So the first wave, where I didn't get a test, because I didn't go to hospital, I was one of the people who just had it at home, just started just few days before the UK went into lockdown. I was working very, very hard. I think I was, during that period, I was working the hardest I've ever worked in my life, we were working on COVID. Because as a public health doctor, we kind of all focused on this. So we're doing stuff on on COVID. And in relation to kind of the public health response, et cetera. So I was working from home, but I was working hard. 

And I had these symptoms. And I think I got them from one of my kids who also were briefly symptomatic about three days before me. Obviously, the main message was that if you're of a certain age, and you don't have major underlying conditions is just going to be a kind of a brief flu-like illness or anything. And so didn't really feel that severe to start with the first couple of days, and it kind of got worse. And it didn't really feel like a flu-like  illness to me, having had flu many times before. But I never got to the stage where I thought I need to go to the hospital in terms of severity. And even in that kind of first two weeks, the fluctuating pattern started to get established, which again, is quite different from my experience of having flu, you don't get that sort of, oh, I think I'm getting better. And then you know, next day, you back to shivering and kind of pains and et cetera. 

So that that felt quite strange to me, but I kind of just carried on, keep calm carry on. And that pattern kind of continued after then, in terms of it was, you know, in the first few weeks, remembering I might have had the temperature maybe on and off more than two weeks. But even beyond that, the other symptoms that I had just kept coming and going. And then some new symptoms started developing like palpitations, later, more kind of symptoms around kind of fuzziness, you know, brain fog, that came actually much later. 

So that's how it happened, I kept thinking it's gonna get better, it didn't get better. And I think what really saved me in that period is that people on social media saying they were experiencing the same - people were baffled by it. I mean, I have many colleagues, doctors, you know, health professionals, who were trying to get back to work and having experiences in this and struggling with that. And I think that kept me going, in a sense that I thought it's not just me imagining all of this, this is happening, and it's happening to other people as well.

Jackie Baxter  4:29  
Yeah. And it just didn't go away? 

Nisreen Alwan  4:32  
Yeah, it didn't go away. I had to take a period of time off sick in summer 2020. As I said, I worked really hard before that. And I always keep going back and wondering whether if I'd really rested at that period, whether the cause of the recurring illness that kept coming over the following two years or so, you know, would have changed - I would never know that. But I definitely didn't rest in the sense that I was - definitely mentally I didn't rest. Obviously we were locked down. So there's not much you could do physically, but mentally aI didn't rest. And then over the following months, physically, I tried to push myself as well, as many other people with Long COVID did. 

So yes, and then it kept coming and going, then lately, I think the relapses have become much more spaced out, much more spaced out. And in between I am achieving, I think some level of normality. It is really hard, because you become very cautious in terms of what you're doing. Because with all the experience of the two and a half years, you start thinking, Oh, I better not do this, Oh, I better do this carefully. I better... you know, so you really start to calibrate yourself. And I think that's one of the aspects that's really hard to measure about complete recovery from long COVID; it's very hard to tell people to disregard all of the experience that you've accumulated around what could trigger your symptoms. So you start kind of building your activities and life around it. So I definitely can't tell you I've completely recovered. I am functioning at a much better level than I was before - on the whole - except where I would have some, you know, relapse period in between. But I am maintaining - I've maintained work for the majority of time, and perhaps at the expense of other aspects of my life to try and maintain that. Yeah.

Jackie Baxter  6:21  
Yeah. I mean, that's obviously wonderful to hear that things are a lot better than they were and that you're able to work. So that's really great. But I think that's a very good point. You know, there are a lot of people who are struggling to work because they have no other choice. But you know, it IS at the expense of their health. And certainly at the expense of their quality of life. You hear people saying that they they work, they struggle their way through a day at work, and then they come home, and they basically just pass out for like 15 hours, and then they push themselves through it the next day. And it's really heartbreaking to hear when people are having to do that. 

Nisreen Alwan  6:56  
Yeah, that's right, exactly. I think work does become I mean, to me, really, it was working, obviously, caring, you know, as a kind of a parent as well. And those were the priorities. And I just tried to kind of build things around. I often wonder, because for most of the time with my work as a academic, it was working from home. More and more now, obviously, we're kind of going back to going in and teaching and things. But I think particularly during that first year, if I was actually physically going to work, I think it's very likely that there wouldn't have been able to maintain that - I think that it helped that I was doing it from home, it was flexible. 

I mean, at one point, for many months, actually, I've adapted, I've had the laptop, I lay on the sofa, you know, I've adapted a workstation around me just laying and putting my leg up - one of my main symptoms were actually leg pain. And that seemed to be common, you know, with other people as well. And also that sort of feeling of chest heaviness, the palpitations. And posture made a difference to me, like how I'm sitting, you know, if I was just sitting like that couldn't maintain it. So I had to adapt all of that, obviously, I could do it at home, I wouldn't have been able to do at work, you know, just lying on the sofa, and working and kind of having made some adjustments to where I am. So I think these things, these things help.

Jackie Baxter  8:14  
Yeah, definitely. That's a really good point, actually, you know, because at that point, everybody was working from home, unless you were a doctor in a hospital. Well, actually, there were other people as well, weren't they? But, you know, the majority of people certainly were at home. 

I mean, as a public health doctor, you know, this pandemic, and the fallout from it, I guess is is your area? And I was watching your TED Talk, which I will put in the show notes, because it's fantastic. And you mentioned that you sort of had doubts about this - If you're young and healthy, you'll be fine mantra from the start. And I guess this is from your area of study that you could see that - not sure about that?

Nisreen Alwan  8:57  
Yeah, I mean, I think definitely I did, right from start - only because there are so many viruses that can produce chronic ill health effects. And this was an new virus. And I felt it very strange that we're being very firmly reassured that it's only about this acute phase. And it's only about if you get a severe illness in the first week or two weeks. And I thought, well, how do you know that? Because it's not like no other viruses can do that. We know that several other viruses can do that. 

So I think definitely, it was just very absent from the messaging, that this is a possibility at all. I mean, remember in the early days, there were this talk about the herd immunity and that if you could get it once and that's it, you get it over with it's all finished. Obviously, we now know this is all not true. But even at the time, I thought, How do you know that? Again, you know, it's a new virus and viruses would behave differently in terms of how long immunity lasts and everything?

Jackie Baxter  9:55  
Yeah, of course. I mean, how could you possibly know with a virus that's only been around for a couple of months?

Nisreen Alwan  10:00  
I mean, at the time I was, I mean, I knew viruses cause chronic ill, ill effects of viruses getting go on like hepatitis and cause things like cancer, et cetera. The actual more kind of the typical presentation of a post viral illness, of a maybe less well-defined post viral illness, I was much less familiar with, I have to admit, I was quite ignorant about it, as most doctors are, I think. Because you're not really taught this or, you know, people don't focus on it in much detail. 

And then the more you know about it, once this happened, once I've experienced Long COVID, more you know about it, you think, you know, that was something that we should have definitely expected. But we need to know more about post viral illness in general, we know little about it. So you become more aware of it. But I think even if you don't have that knowledge, and also around ME, and CFS, and things like that, and you know, didn't really have good knowledge about it. But even if you don't, you know, it's basic knowledge, I think, for everybody who maybe works in health, or had some sort of medical education that viruses can cause chronic health effects. And that should have been an obvious possibility from the start.

Jackie Baxter  11:10  
Yeah, I mean, it's really interesting, isn't it? I mean, obviously I'm not in any way, a medical professional, but I had a couple of friends with ME that I knew, you know, before COVID came along. And, you know, I thought I sort of understood it. But you know, in hindsight, I really didn't. But I guess we were all maybe a little bit naive, I don't know, and thinking oh, well, you know, we've been told we'll be fine. So, you know, why wouldn't we believe that? But you're right, you know, post viral illness has been around for a very long time. And this has kind of opened my eyes to how ignored it's been and how little has been invested in it, which actually is awful, isn't it? 

Nisreen Alwan  11:51  
It is and once I've went public with Long Covid and started to talk about it, I've had several people I know personally come to me and say, you know, we've had this thing, we've had this virus in the past, and we've had this illness for like two or three years after. And it was really a struggle, and we completely understand, we understand and identify. And I didn't know, I didn't know - these people I knew. And I you know, perhaps not very well, but I knew through different networks. And I didn't know and I think people - even people who struggled with post viral illness before the pandemic didn't quite, you know, understood, there's quite a lot of awareness. And then people would come to me and say, well, we just, you know, we used to go to the doctor, and they didn't know what to do. And it was just kind of something that we had to manage. And, you know, take time. So I think a lot of people have experienced that before. It's just that collective storytelling about what's happening, perhaps came a bit more together with long COVID. Because we had this pandemic and loads of people getting infected at the same time.

Jackie Baxter  12:54  
Yes, the sheer number of people it has happened to all at the same time, I guess, isn't it that's made, as I say a bit more of an impact. I'm not sure if that's quite the right way. But I really do hope that it will shine a bit more of a light on this sort of condition that has just been ignored for decades. 

You mentioned social media earlier when you were talking about your experiences, and I think social media often gets kind of vilified, doesn't it? And maybe rightly so in some perspectives, but what are your experiences of kind of finding community and support in these spaces? Because it's certainly been huge for me.

Nisreen Alwan  13:34  
Yes. I mean, I mentioned lifesaver in the early stages, because people were putting out their accounts, about what they're going through, and particularly around that sort of fluctuating nature of long Covid - it was really weird to me, because, you know, I haven't experienced that before. And it was just, I mean, reassuring is the wrong word. Because it's you're not reassured that you're experiencing this, but at least you're not experiencing it alone. You know, it's not just you. So I think that played a big part. 

Because you couldn't even have the words to describe it properly. And  I don't think I did, perhaps maybe at the very early stages, because I was just - articulating long COVID is difficult. And I think some words that became mainstream, like fatigue and brain fog and post exertional malaise or post exertional or symptom exacerbation, actually, you know, at the start people who weren't familiar with them, it was hard to articulate. I mean, one of the main symptoms I had was this feeling is like, this thing is like just sitting on my chest. I wouldn't describe it as chest pain, but it was like this heavy feeling. And I remember one of the things you know, in social media, people would describe it as like a small cat sitting on your chest. And I thought Yes, that's exactly it - that's how I feel. 

And I think these were very helpful the description of these symptoms and actually, this is again, it's not specific to LonG COVID, I think we tend to lazily label things so that others understand. So a typical example is fatigue, right, you just label these feelings that you have, which is about the kind of the energy that you have, or maybe the pain that you have in your body, you kind of label a whole load of collective way of feeling in different parts of your body under the small word of fatigue. But you do it, because you want people to understand, you want to communicate, you want to say I'm experiencing this that others have experienced as well. So please help me. 

But actually, you know, a lot of these things, I think, you know, we could do much better kind of describing the symptoms themselves. And I think that a lot of that came out in social media where, you know, people didn't necessarily immediately labeled their symptoms with kind of common labels and describe them. And that was really helpful. 

So obviously, then I became more kind of vocal about it. So I talking about, you know, summer 2020, I started kind of writing articles about it, and to talk more about it. And I think, then you see the other uglier side of social media where there are a lot of people who are trying to kind of, I think just didn't like me saying that, or others, you know, talking about long COVID in the context of COVID. And then you had all the negative kind of comments. And I mean, the kind of trolling and the abusive, and the really rude comments, and all of that, they're quite destructive, and they can really get to you. And obviously, that if there are threats as well, and that's really kind of serious, but you kind of start learning how to deal with them, blocking people, etc. 

But I think the more hurtful ones are the ones where, you know, the more kind of passive aggressive sort of interactions that you can have, you know, more of the discrediting or gaslighting sort of comments. And I did touch on that in my TED talk a bit about that sort of position of being a scientist and a public health doctor and somebody living with the condition as well, and how that can be labeled as you being biased, you know, by experience. And so I think that did affect me definitely a lot in the first year, but it got better as well. So I think social media is just like most other things in life, a double edged sword. And I think it's about you kind of setting boundaries and managing it as what suits you really.

Jackie Baxter  17:23  
Yeah, absolutely. And I've definitely noticed, it's one of those things that can really suck you in, isn't it? You know, I think Twitter is probably the worst for it. And it's like, you can just scroll and scroll and scroll. And you can see all these people who are saying really interesting things, or really awful things where you want to, you know, post a message of support or something or to try and help and then, you know, before you realize that you've been sort of scrolling Twitter for an hour and a half, and you're exhausted, and you've taken on all of this stuff on top of your own stuff as well. So I've definitely needed to kind of be quite careful to not get too sucked in and to make sure I gave myself breaks from it as well. 

Nisreen Alwan  18:02  
Yeah. 

Jackie Baxter  18:03  
But yeah, it's yeah, definitely, you know, huge benefits from it as well. And then it was actually really interesting. You just touched on the personal versus the professional side of having long COVID, but also being involved in the public health-ness of what you do, and should you not be more valuable for having experience of both sides of it? So what have your experiences of that been?

Nisreen Alwan  18:31  
I think, having long COVID and trying to understand the condition - and then obviously, later on, I started doing and designing some research around it - just really changed completely my perspective in terms of how if you've experienced the condition, you can inform, you know, the questions that you ask research, the approach that you take. I mean, we've been trained to have patient participation and kind of design research. But I think I didn't realize how vital, I think it's fair to say, it is right from the start. Because sometimes you start the process too late so that you you design your questions, and you think this is what I need to know, or, this is what my message is and then you kind of say, well, let's involve, you know, patients at this stage. And I think it should be right from the start. In terms of coming up with the questions, what's important to know. 

So I think it's changed my approach a lot and looking at long COVID Because I experienced it, that I saw it as a strength. But obviously I was aware that people were seeing this as bias, as a weakness, that you're once have the condition that you might not be able to kind of think straight about the science because your influenced. And yeah, I think that's wrong. And I think it comes from the false kind of concept that you're somehow 100% objective, if you've not experienced a certain condition like long covid. So if you've not experienced long COVID, that is an experience in itself. If you're talking about long covid, you don't know what it's like, or you've experienced COVID. And you've recovered completely, that is an experience. And then you've got long COVID. That's an, it's an equivalent thing. And I think we just need to kind of always take that into account. 

So I think it's fair that I always say, and that's why I said from the start, I've experienced it. And I also I try very carefully not to generalize my experience, we know the long COVID experience is so varied, I know I've been very lucky in that I've been really on the mild end of the spectrum of it. So I try very hard not to generalize what happened to me. But it just gives you an understanding. I mean, if you've experienced something around it, I think it gives you a deeper understanding. And then you would also connect a bit more effectively, I think, with people who may have different experiences, you know, to bring people together. 

So I think we need a culture shift. I mean, again, once I started speaking about this kind of this false bias versus objectivity, some people reach out to me, like PhD students saying, we've started doing PhD, because we've experienced or  relative experience to this condition, but we can't really say that, because that might be perceived as kind of influencing our research. So we try not to kind of to shut it out from presenting the research by now - I think that's wrong. I think it enriches things and I think people shouldn't be ashamed about doing it - certainly shouldn't be disadvantaged, you know. And I think these are the things I touched on that affected me at first. And that sort of image, the concept of objectivity, and you're kind of not achieving that. And I think I've become more confident in challenging that now. 

So I think it needs to be taught everywhere. Definitely medical schools, they need to be taught and needs to be taught in any sort of scientific training, that this is not a weakness or a bias, it is a strength. Yes, it could influence what you're doing professionally. But that's the point. You want it to influence what you're doing professionally. But I do think it is fair that perhaps if you are doing something that would influence a lot of people in designing, to say, actually, I've had this experience and that might have influenced and then when more people do this, it will become normalized. And it will be seen as an advantage, I think,

Jackie Baxter  22:28  
Yeah, because I think anybody, whatever their experience, is going to have some form of  influence on what they are doing. So whether it's an experience of long COVID, or, I don't know, not long COVID, like you said, or literally anything else, you know, be it race or gender, or, you know, any of these things where people have different experiences, you know, so it's like, you know, what is the quote unquote, normal standard kind of person - like that sort of person doesn't exist, do they?

Nisreen Alwan  23:03  
No, and I think that's something that science should be very wary of, to kind of project that, well science is objective - well but scientists are human, isn't it, and every single human is affected by their experiences, by their life experiences, you know, the people around, you know, they integrate all of these experiences, and I think it's naive, really, to pretend that scientists are different. And what we've done in science, is that we've got the system where you declare your interest. And it's been so far, mainly around financial interests. So if you say if you get funded by a drug company to research certain drugs, and you need to kind of disclose that. 

And obviously, it's a very tricky situation. So if you extended beyond these things then well where do you stop? You know, you could write three pages on every scientific paper saying, Oh, this is my life. And actually, there are researchers who can do this, where they kind of report their findings. And they say, well, actually, I've interpreted from these findings from this point of view, this is where I am, it is a big ask, and most scientists would not want to kind of go into that much detail in terms of their personal life, doing that. So I think there's a conversation to be had about it. And you know, maybe there's a way of agreeing these things. But until we get there, I think it would be fair to to ask people to say, Well, nobody's really truly objective. We're all human. We're all influenced by things. And if some experience that you've had is informing you about something because you've lived that experience, why is that a bad thing?

Jackie Baxter  24:37  
Yeah, exactly. Is this not why studies and stuff is sort of peer reviewed and other people are involved? It's not just one person. So is that not supposed to kind of level out any potential biases, isn't it? 

Nisreen Alwan  24:50  
It is. But again, I mean, the peer review is kind of mainly from a scientific methods point of view. You've done things correctly and from a scientific methods point of view. So you can have a whole paper where the research question is asked in a way that really would not benefit the patients. And you know, that could pass the peer review process, because the peer review is really about okay, well, we've asked the question, how have you design your study? Is that appropriate in terms of design, etc? 

So, yeah, I think for me, really, it has been a process because you are going through these things. And I think sometimes, I mean, I got involved in the long COVID community, right from the start, in terms of research, I probably am quite kind of reserved about what I say about what's reported as advancement in research or any kind of suggestive treatments or anything like that, that has more than many other people with long covid is because I'm applying all of that training in terms of looking critically at things all the time. So I think it is good that you have both of these, and I don't think you'd lose them just because you'll have long covid,. It is undermining to thing Oh just because you've experienced that condition, they kind of lose all of the stuff that you know, already. And you just, you know, you become very biased into kind of thinking of one direction or another.

Jackie Baxter  26:09  
Yeah, exactly. You know, you're still a professional, you still have that knowledge and all of those experiences from before you were ill, you know, you've not suddenly just become completely stupid.

Nisreen Alwan  26:19  
Yeah, it's an additional thing that informs you, that enriches, you know, it's not a good thing to have, but it enriches your experience. I've learned so much in the last few years, two and a half years, really, just really enriched by that experience, and the interactions I've had around it. And I guess, for a lot of people, you know, they've had long covid, you know, it's terrible, but they're kind of then maybe, you know, presented challenges that made them kind of know themselves more, or know other people more, or kind of go in different directions, I guess, like you have as well, you know, doing this podcast. 

So I guess, you know, these are silver linings. And it's impressive. It's impressive how kind of lots of people with long COVID. And I guess that might apply to other conditions as well have gone in this direction. And the activist approach for people with long COVID has been immensely impressive, I think. And I think that's because I think going back to your social media question, I think social media did play a big part in this because it brought people together. Otherwise, it's difficult to do that.

Jackie Baxter  27:23  
Yeah. And something that underlines, you know, the kind of the whole long COVID chronic illness experience is this feeling of isolation and being cut off from who you were before and other people and social media does give you that doesn'tit, it brings people together. 

Nisreen Alwan  27:37  
Yeah. 

Jackie Baxter  27:38  
Are you able to chat a little bit about the research that you've been involved in for long COVID?

Nisreen Alwan  27:42  
Yeah, I mean, late 2020, we had a survey, we designed a survey to just characterize, look at long COVID. Really, I think it was one of the first surveys, because it wasn't particularly resourced. We were kind of doing it on top of other things that we're doing, it took a while for us to report the findings, but it was over 2500 people were surveyed, majority from the UK, but some from other parts of the world. And I think we looked at the symptoms, but also looked at the pattern, you know, in terms of that fluctuating episodic nature, we kind of described that, we looked at the triggers, what people thought triggered their symptoms, in terms of physical, you know, and mental exertion, stress. 

I mean, I think stress maybe is something which is really less talked about. Maybe I'm digressing, but I think that's an important finding, but because I think certainly my experience, stress triggers my symptoms sometimes. And then I get stressed about being stressed, if that makes sense. Because I know, it triggers and I sense it. And I think, you know, it is a common trigger. But because of that harmful narrative of Or long COVID is in your head, people kind of talk less about this, because they don't want to give the opportunity for others to label them as well. You're just stressed. So you're imagining you've got Long Covid. It's not like that. But I think you know, because we know stress triggers all sorts of other physical relapses, rather than physical illnesses. You know, that's a known thing, in terms of this kind of biological mechanisms, etc. So anyway, so that's, I think that's something which probably we need to talk about a bit more, because it's very much related to life, to work, to all sorts of other factors that could help maybe people manage long COVID a bit better. 

So yeah, we did this survey. And then that one of the main findings actually were that we asked people, whether they think they've had adequate rest in the first few weeks and, and everybody in their survey had long COVID. But we managed to kind of describe two clusters. And there was a minority of the sample who had much more severe long covid and then it looks like it's getting worse with time. And the people who had more severe kind of long COVID with more symptoms, not getting better, most likely systems involved, they were more likely to describe that they didn't have adequate rest in the first few weeks of the illness. 

I don't think there's much stronger evidence about rest. I mean, this is seems to be now a kind of a common sense advice - rest you know, when you get long COVID. You know, it's very hard to establish definitive evidence. But this is something that we kind of found in the study. 

And then what we did a year later, is go back to the same people and ask them to tell us how they are now, we kind of looked more at kind of the recovery. How does that look like? Because very few people describe themselves as recovering, I think, again, the recovery is really an under researched area, because you've got that bit where I think at the start, a lot of people were describing themselves as recovered. And maybe if you go back to them, now, they might say something like me, well, like we're functioning, and we're working, but maybe not sure we've completely recovered. And it's, it's something that needs to be characterized a bit more. 

But we also looked at stigma. So my colleague, Maria Pentelic, I worked with her and she led a component of that survey, which is like a stigma scale to ask people, whether they felt stigmatized, and that included whether they felt other people discriminated against them, but also include things like them, not internalizing a stigma. So they're not reaching out about their illness, because they just, they're kind of judging themselves for having it. But also, there's a bit which is anticipated stigma, which is, you don't want to go to your GP, because you're feeling the GP is judging you, as you're just making this up. So you don't go in the first place. You don't seek help. So there's all these dimensions that we've described as well. 

And then I've been involved in, really, I've been focused more lately, on kind of the inequalities of long COVID. And so you know, who actually gets diagnosis? Who is more likely to get care? Is it following the pattern that we know that people are more disadvantaged and perhaps people from more deprived areas and people from ethnic minorities - Are they getting the care that they need? I mean, we've got some evidence telling us that it's less common in ethnic minorities. But actually, I don't think that is correct. I think it's about identification, and description of Long covid - it kind of doesn't make sense that we know people people from ethnic minorities was much more likely to have the infection. And I certain ethnic minorities more likely to have severe COVID. And then you say, well, they're less likely to have Long Covid - there's something there about kind of the identification. 

So I'm working on that, on those aspects. And part of that is part of this Stimulate ICP study, which is a big study, looking at different types of treatments for long COVID and different types of investigations and scanning. And I'm working on the inequalities side of that.

Jackie Baxter  32:52  
That sounds really fascinating. And yeah, it's very interesting what you were saying about the sort of incidence of long COVID in ethnic minorities. There was somebody that I was talking to who was saying about education about long COVID, because a lot of people just across the board, actually, you know, will be complaining about symptoms, largely following a COVID infection. And then when someone says, That sounds a bit like long COVID, and they'll go Ahhhh, you know, it's sort of like this education angle of where people have obviously heard of long COVID. But, you know, it's like, oh, it couldn't happen to me. And there's obviously something missing there. 

Nisreen Alwan  33:33  
Yeah. And that's what we're trying to do that by kind of doing a study where we're reaching out on the community and saying, Have you got these symptoms after, say, three months from COVID? You could have long COVID, we want to talk to you because, exactly, it's about reaching out. But I think, again, I mean, the jury's out, we still have to do the research. But my hunch is more than education, it's a bit about labeling as well. And because of the press that long COVID had, I think some people might not want to be labeled with long COVID. It might be too stigmatizing. And particularly if you're disadvantaged and kind of automatically more likely to be disbelieved about things. You might want another label for your illness, other than long COVID. Because of all the kind of, I would call it a political drama really, on Long COVID Because that's what it is. It's always linked in people's mind with the restrictions restrictions. 

I mean, it is fascinating on social media that you talk about long COVID And somebody comes and says, Oh, you just want to lock us all down again or something. So it's - there's this kind of association. I think the media is responsible for a lot of that as well, in terms of you know, that association because, well, nobody's talking about lockdowns anymore. This is something of the past, you know, I think it's just there's a lot of factors shaping how people react to that label of long COVID. And maybe people don't want that extra burden. Even if they're not well, 

I am definitely a proponent and I've always been, we've done articles with Elisa Perego who kind of initially came up with the term. And we did some pieces in 2020, about why we need to continue using this term, it's a patient made term. And it's really kind of doesn't make assumptions like post COVID syndrome, for example, there are assumptions and some of these names have assumptions. So I'm all for using long Covid. But I think it's fair to say that we need to look at how people react to having that label. Is there some disadvantage carried from having that label to people? And we need to look at that and research that as well.

Jackie Baxter  35:36  
Yeah, definitely. Yeah. So what are your thoughts on kind of where we should go from here? Things like health measures and protections or Well, anything, I guess? 

Nisreen Alwan  35:47  
I think we need to learn really, and it's very disappointing to see the lack of learning from this awful pandemic. And I think things that we've learned, things around how masks can be really useful in certain settings, how clean air, air quality is good for us, not just from a COVID point of view, but from all sorts of other airborne viruses and maybe future ones as well. I mean, we could have another pandemic, another airborne virus could come up. And you know, if we have the systems to deal with it then, then then we'll be better prepared. Where is all of that learning going? It's very frustrating. 

People are so keen to just get back to normal. I mean, there's no such thing as back to normal in my opinion,  we've gone through experience, we've learned and things progress and move on. And I think there's this bit about, we need to do things exactly the way we did them in 2019. That is not realistic, whether we have the pandemic or not, that just doesn't happen, you know, things move on. So I think that's frustrating to see. And I think change will happen, but it probably will be slow. 

I mean, if when I get frustrated about these things, I read about history of things about, like the uptake of, you know, vaccinations or uptake of sort of certain hygiene measures that we now take for granted,  things, even public health measures like seatbelts, for example, everybody just happily, you know, when they say, oh, we can't wear masks for life, well, you're wearing seatbelts for life. I'm not saying you wear masks for life. But it is something that you can use as a tool that you can use if you need to use it, that if it reduces your risk and other people's risk. It's not an evil thing. It's just a public health tool that you can use it as needed and when it's effective. 

So I think, you know, with public health, you look back in history and think what we're experienced is not unusual. All interventions had lots of resistance when they started being implemented. So that kind of gives me a bit hope. But I think we need to learn so that we're better prepared if there's another pandemic, but also COVID is still happening. Other flus happening, other viruses are happening, why not apply what we've learned to prevention of disease?

Jackie Baxter  38:04  
Yeah, I read something about someone comparing air quality and water quality. And we don't dispute the fact that clean water is absolutely 100% vital to our health. But as soon as you start talking about air quality, then suddenly you're a conspiracy theorist or you know, you want a lockdown. Yeah, it's really interesting, isn't it?

Nisreen Alwan  38:22  
It is interesting, and it's very hard to disentangle. Almost everybody went through a very hard time in the pandemic. Some people, you know, much harder than others, even they didn't experience long covid, I think, you know, just kind of the lock down, the employment aspect, you know, the isolation, businesses going - anyway, lots of it. And I think that's something again, I've noticed is people have become very judgmental, I think, and it's kind of like black and white, and it's like a war. And maybe you see that exaggerated in social media as well. And I think people have gone through a difficult time. So I think lots of people react in a way that maybe reflects the difficult experiences they've had. 

And I think it's good if we always remind ourselves, if we want to change, we need to keep putting out those kind of positive messages about why we need change, how we change, and not get drawn too much into kind of wars, you know, and divisions about who's right and who's wrong and all that sort of aggressive way of clashing that you see a lot on social media. So I think it's been a difficult time. 

But going back to long COVID I mean, some media headlines are really very frustrating about you know, is it real, you know, that sort of thing. It's not helpful. And it's just there for the clicks really, because then there's some form of denial around long COVID. It might give some sort of short term relief for some people. And I think that the kind of the media can feed on that. Not all of it. It's better now, it's more accepted now, isn't it? But you still get these sorts of messages.

Jackie Baxter  40:00  
Yeah, and it's so triggering, isn't it? When you see that? 

Nisreen Alwan  40:02  
Yeah, and you don't have to interact with it, or read it, I guess. I think the way people with long COVID have been amazing - the community of long COVID is - they've been very positive., in even kind of my area, which is public health & prevention. I mean, I've seen public health messages about prevention, which are amazing, and perhaps more than I've seen from some public health agencies, you know, so I think it's about that kind of maintaining the direction of where you want to go and the positivity rather than being drawn into kind of this factions, you know, fighting each other, etc. Because I don't see this going anywhere, and people do get on board on things. And I think that's what history teaches us in terms of public health. 

I mean, with Long COVID, I feel like I'm a broken record, because I'm saying the same thing over and over again. But I think that is needed, you know, to kind of reinforce the message that this is a risk. And we need to do our best to try and reduce it as much as possible. And I mean, vaccines, obviously, we know that the risk is reduced with vaccines. So that's really good news. But I think the message should also be that long COVID was not completely eliminated by vaccine. We know this so far. So what else could we do to try and minimize the risk?

Jackie Baxter  41:20  
Yeah, it's like sort of lots of little things that help - one thing on its own it's not going to do the trick. But that's good to know, change is happening. It will happen, however, slowly.

Nisreen Alwan  41:31  
I think so - I think it's inevitable. It is inevitable that change will happen, I think, but it's frustrating for us. And you know, because watching this in real time, I guess. 

Jackie Baxter  41:43  
Yeah, absolutely. Yeah. Well, thank you so much for chatting with me today. It's been an absolute pleasure listening to you speak. So thank you so much for giving up your time and everything else that you're doing as well. And, of course, all the best with your recovery as well.

Nisreen Alwan  41:57  
Thank you so much. Thank you, Jackie. It's been such a pleasure to have this conversation. Thank you.

Jackie Baxter 
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 buymeacoffee.com/longCOVIDpod 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 do get in touch - I'd love to hear from you.


Transcribed by https://otter.ai