09 - Claire Hastie - founder of Long Covid Support, & advocate

Episode 09 of the Long Covid Podcast is a conversation with Claire Hastie. Claire became ill with Covid right at the start of the first wave in the UK and like so many of us, is still suffering the effects of Long Covid. She started the Long Covid Support Group on Facebook in early May 2020 which has grown into a real force to be reckoned with.

We talk about her experiences, how the group came to be and what they are fighting for - there have been some really fantastic accomplishments, but sadly there is so much more that we need. Claire is an inspiration and was incredibly interesting to chat to, so I hope you enjoy as much as I did.

www.longcovidsupport.org has many useful resources, a link to the private Facebook Support group and also a "DONATE" button if you have any spare monies.

If you are interested in joining the Long Covid Choir, you can find more information here: www.longcovidchoir.org

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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  
Welcome to this episode of the long COVID Podcast. I'm very excited to be joined today by Claire Hastie, who started what I think was the original long COVID support group, certainly the first one that I came across. And you've now become quite an important advocate for those with long COVID So welcome to the podcast, Claire. 

Claire Hastie  
Thank you. I'm not sure if could make claim of being the original. Actually, I have no idea. I think there's probably lots of groups, and they probably all started without knowing the existence of other groups. So the one I set up started it on May the second 2020,

Jackie Baxter  
 I can't remember, actually, what date it was that I came across it. Could we start off by you briefly introducing yourself a little bit. Who are you and what do you do, or what did you do before COVID? 

Claire Hastie  
So I'm Clare hastie. I'm 49 years old. I'm from the North East of England, but I've lived in Birmingham for a long time. I'm a single parent of three boys now aged 17 and 12 year old, twins. I was a strategy consultant for 20 years, and for the last five years, I've worked in corporate reporting, and I fell ill with COVID, as did my children in March 2020, the week before the first national lockdown. 

Jackie Baxter  
Yeah, so like me, you were a first waiver right at the start. What were your experiences with COVID, and then what became known as long COVID, because back in those days, long COVID Wasn't really acknowledged or known about, I think, to start with 

Claire Hastie  
correct so my first inkling of being ill, I woke up on 17th of March of Tuesday, and I felt the tiniest inflammation in my throat. I felt like I had a sore throat without the sore and normally I would have completely ignored it, but obviously the whole country was on high alert. 

Claire Hastie  
And if you recall back then, lots of events were being canceled preemptively. The government hadn't yet put measures in place or any protections, but a lot of people were preemptively acting. So I had already been working from home for about 10 days, because I have children in two different schools, and I thought, Well, what I can do is perfectly doable from home. So why would I put my colleagues at risk? But I sing, and I'd gone to a rehearsal on the Sunday, which turned out to be the last one, because we also preemptively canceled our performances, and we kept two meters apart at the time, it was one meter guidance, and we did what we thought was right. But nevertheless, I don't know for certain that that's where I caught it, but I suspect that might be where I caught it. 

Claire Hastie  
So normally, I would have ignored it this slight, funny feeling in my throat, but I erred on the side of caution and decided to keep my three children off school, and I carried on working from home the rest of the week. 

Claire Hastie  
And then on the Sunday, which was Mother's Day, I remember waking up early to go to the loo, you know, in the early hours, and my chest felt really weird. And I've never had asthma or anything like that. And I was half asleep, so I just was vaguely aware of it. Went back to sleep, and when I wake up, I just, throughout the day, just felt worse and worse and worse. So I fired up my laptop and tried to get my affairs in order, in terms of handing over my to do list to colleagues and saying, I'm actually becoming really ill here. Think this might be COVID, and so I just made sure that my to do list made sense to other people. And yeah, that was my mother's day, written off. 

Claire Hastie  
And then I think a few days later, I went to hospital for the first time, went to a and e because I developed really awful pain in my back, I believe to be the lower lobe of my lung. And I think in the end, I went to a&e Five times over the first three months. Thought I was going to die more than once. Actually was surprised to wake up in the morning more than once. 

Claire Hastie  
I wrote my end of life wishes and said what I thought might be my final words to the one child who happened to be going past my bedroom at the time my children caught COVID. I think from me, I was so out of it that I actually really, it's all a blur, but they all were ill with it at the time. My twins were 11. One of them developed really weird pains in his chest and in his solar plexus and in his head, and what he described was a lot of what I was going through. His twin brother had joined.

Unknown Speaker  
Pain. And at the time, we didn't know that was a symptom, but now we know it's actually very common. He started with joint pain again, wiped out, fatigued, but he had terrible sickness and diarrhea for about several months. And then my eldest, who was 15 at the time, his toes went an alarming color. And now we know it's COVID toe at the time, again, we didn't realize so both he and one of his little brother's toes blistered and an alarming shade of dark red purple and then even blackening sometimes. 

Unknown Speaker  
But thankfully, my eldest son always felt well in himself, which is just as well because I'm a single parent and he had to do all of the cooking and laundry. We didn't do so much cleaning and neighbors and friends shopped for us, because I was pretty much bedridden for three months, I would drag myself out into the garden, because the spring was really lovely that year and it was easier to breathe outside. 

Unknown Speaker  
So I dragged myself outside lie on my front, face down on the grass, on the picnic rug. I looked like I'd been dropped from a great height, like one of those murder scenes where you get a white line drawn around you. That's what it was. And I was too ill to listen to the radio, even I just it was kind of information overload, or watch TV or anything. I just lay there like a lump and watch the bees buzzing around the flowers. And that was the beginning. 

Jackie Baxter  
Just, it's such a horrific experience, isn't it? And I think what a lot of people don't realize is that a lot of us were going through this, if not entirely on our own, you know, responsible for ourselves, responsible for others, with no support from anywhere else. And it was terrifying, wasn't it?

Claire Hastie  
 It was really, really scary. It was scary if I went to Amy five times, each of those times was on medical advice, I think the first time I rang 111, and you just on hold for so long, and then eventually someone rings you back, and you just you're not muster of your own destiny. And a friend of mine, a nurse, actually, she'd had an awful experience where she'd run an ambulance in the middle of the night, and it never turned up. And I just thought, I just don't want to be in that position, a I don't want to be more of a burden on the NHS than I need be, but nor do I want to be waiting and waiting for something that might never arrive. So I actually, each time I went, I drove myself, and I never felt dangerous. Otherwise I wouldn't have done it, but I did, and I somehow dragged myself around from the car park. I mean, sometimes I just sit on the ground on the way around, and I put my head between my legs because I thought was going to pass out and stuff because the exertion of walking, I hadn't left the house for months, and I just turns out that I couldn't really walk around to use a wheelchair for well over a year, and I still do regularly use it. So yeah, it was scary times. I was one of those people who, even though I felt dreadful, my heart was killing and palpitations through the roof and all sorts of pains, and my oxygen levels, apparently, were always fine, and so they would just send me home, and they'd say, Don't come back unless your lips go blue or your chest pain becomes unbearable. So I dread to think how many people actually might have died as a result of that advice. Yeah, well, exactly. I mean, you know, being told that you're you're fine, it's like, well, I don't feel fine. I'm far from fine. And I think a lot of us found that we were too ill for GPS and 111, because, you know, I had shortness of breath, I couldn't say sentence, heart pain and palpitations, which, according to 111, were red flag symptoms that would say, get yourself to hospital or ring an ambulance. But then you'd get there and they'd say, No, don't come back unless your lips turn blue. It's really tricky. It made me think that we almost need a level somewhere in between the GPS and a and e we need. Don't know exactly what the answer is, but there was no care forthcoming. I never actually contacted my GP for the first few months because I knew they couldn't do anything. But then eventually they rang me because they know I'd gone to hospital several times, and my GP was brilliant in that she said from the beginning, there was never any doubt that she believed me, which was amazing. I mean, I'd barely ever gone to the doctor over the years, and I didn't have a relationship with that particular doctor or anything like that, but she believed me, and I was really appreciated her honesty, that she didn't know how to help me. So I've really appreciated that being believed and also with the honesty. I didn't want to be fucked off with some rubbish, you know, give me some antibiotics randomly or whatever. I'd rather be told, Look, I don't know. Then you know where you are, and you can have a more honest conversation. So as I learned stuff over the months, through our support group, I was able to send my doctor webinars or details of what we'd learned from people in other countries or elsewhere in the UK. So yeah, I've actually been really lucky, and I don't think I've had any experience of not being believed, which I'm very grateful for that. And I know it makes me probably quite unusual actually, in terms of having GPS that, believe me, I'm in the same boat. They've not been very helpful, but they have been sympathetic and understanding at least, which is something I know there are a lot of people that haven't had that, which must make the whole thing even worse. I think it's huge, actually. And among friends and acquaintances, again, I haven't had anybody question me at all, which I think is brilliant, and someone who I've sung with over the years, but don't know enormously well, I was really quite flattered, because she said, Well, if Claire hast he says it's bad, it must be bad. And I thought, Oh, well, that's amazing, that she said that.

Unknown Speaker  
But thanks.

Unknown Speaker  
You know, my employer has been amazing. I really haven't had any experience. If they've not been believed. It doesn't make it all better, but it does help, doesn't it? I think it helps enormously. A lot of people in our support group have found some of their greatest distress and impact on their mental health, then physical health, because those of us living with long COVID know that stress is one of the biggest impacts on our physical symptoms. I know people who, as I don't know them, I've come to know them somewhat through our group, who've historically been what you'd call kind of kick ass, people who can very well stand up for themselves and just don't take any nonsense and self advocate have been reduced to the worst lows as into the point of self harm or considering self harm because of their frustrations at being able to access care, being bounced around the system, being disbelieved. So as you say, it doesn't actually help your symptoms, but it can potentially stop them from getting worse on account of the stress caused by not being validated. Yeah, absolutely, that being believed is so important, isn't it? So yeah, you said you'd started the support group at the beginning of May. How did you sort of set it up? And why did you realize there were other people at the time that were not recovering? At that point, I'd been lying like a lump in my bed or on the picnic rug in the garden for about seven weeks, I think, and I was so out of it that I didn't even really think, are there other people doing this, going through this? Why am I not getting better? I just literally lay there like a lump. Well. Been doing daily updates on Facebook because lots of friends and family were asking how I was, which was lovely, but it was absolutely exhausting and way beyond me to respond to them all. So I felt like a bit of an idiot for doing it. I sort of did a date on Facebook, and then people were asking me to do it every day, and I was like, Well, no one really cares. And I know we were saying because a lot of them didn't know anybody else who had COVID at that point, so they were really fascinated and learning and concerned. And sometimes it would take me all day and massive amount of energy that I didn't really have to compose post, and I kept sort of trying to stop it, and my friends were like, no, no, please tell us how you are okay. And it was easier on balance, to do that than it was to relate to lots of other people. But some points, I contacted an old school friend of my sisters who is a physio specializing in me because I was concerned and wanted to do what I could to avoid getting something like that. Because my first career, my 20 year career as a strategy consultant, had come to an end because my business partner developed splandular Fever, which turned into me in his mid 50s. He'd asked me if I wanted to take over the business, but I didn't want to, for various reasons. Much as I absolutely loved working there, and we all did, so we really reluctantly closed down the business because of his MA, which he ended up having for something like eight years. And I'm not sure if he's ever got back to his pre illness self. So I'd asked my sister's school friend if she had any tips for what I should or shouldn't do. It was, I think it was Saturday, second of May 2020 another friend sent me an article in The Guardian about somebody else who wasn't recovering. So I thought, well, I've got these tips. I know I'm not the only one in the world, which, as I say, I haven't actually questioned that before. I was too busy being out of it. I've never set up a Facebook group in my life. I'm famously rubbish at technology, especially in a completely befuddled state that I was, but I just pressed a few buttons and something happened. So then I shared the article. I was aware that a couple of Facebook friends had commented talking about them having ongoing coughs and ongoing whatever symptoms, so I'd mentioned it to them, and just through word of mouth, word spread, and then a lovely lady, Marga O'Hara, got in touch, who was in my group, and said, Would you like me to set up some rules, and this is what you're supposed to have in groups. And I was aware, like, oh, I have no idea. You know, honestly, I'm so ignorant. Just a bit like, okay, that'd be brilliant. Thank you. So she became an admin in the group, and then over time, you know, not very long time we've added to the team of admins and moderators for the group. And then after really, not very long time, after less than a fortnight, if that really, I know there was Barbara Melville, who co founded long COVID Scotland, who I think you've spoken with, she and I started messaging each other, and we need to get out there on Twitter. It was all a bit of a blur. I just remember lots of WhatsApp messages and very late night phone calls. We used to tend to have phone calls at 11pm Barbara and I were obviously both night old. Get and get creative at that time of night. And so we'd have these kind of powers about what we would do. And we soon sort of found a community on Twitter, which I'd never been active on before, but then actually, Twitter became an app, well, weapon of choice, let's say, for trying to raise awareness and just sort of tweeted relentlessly. Again, I'm not techie. Had no idea what to do, but I just if I saw an article that someone had written, I'd comment on it and say, Thank you so much for covering long COVID our face.

Unknown Speaker  
Group has this many members, and we're in urgent need of help. And I remember having a conversation with Barbara saying, right, we need a three word slogan. And I was like, research. And was like, we were just trying to rack our brains. Let's think three things, beginning with our So Barbara and I brainstormed and came up with rehab research and recognition, which became our mantra and our battle cry, I suppose, for what we wanted, and rehab, in its broader sense, helping us get back to our former lives, be that through return to work or education as well as actual treatment, be that pharmaceutical, non pharmaceutical, physiotherapy, whatever it was, just get us back to our former lives. Invest in research to help us do that and then actually recognize that we exist, because at the time nobody knew of our existence. The message was, and actually still largely is, you'll recover within 10 days or two weeks, or you might die. And the mantra was, again, very much, that if you were older, male, overweight from an ethnic minority and diabetic, then you were at risk. But if you were young and healthy and fit, the view was that you'd be fine, and you might be on the sofa for a few days, but then you'd be fine. And so we had to really, really shout for our existence to be acknowledged. And then, you know, later in Maine, not much later, actually, Dr Alyssa Perrigo, who's an Italian archeologists, who we bumped into on Twitter, she mentioned the phrase long COVID. Oh, that's it. We'd started a hashtag before Tim Spector of the ZOE app had done an interview, but he'd mentioned one in 20 people seems not to be recovering for 5% so I'd started a hashtag, COVID one in 20 because that was the first time anyone had acknowledged other than the odd media article here and there, but it was the first time anyone had quantified or attempted to quantify our existence. So then, when Alyssa used that term, Barbara and I were like, That's it. That's the term. And so we renamed the Facebook group. It's not long enough to set up our long covid.org website just relentlessly tweeted and tweeted, always using the hashtag long COVID. That term ended up being picked up and used around the world. Yeah. I mean, it's now the term, isn't it? Well, it is, but not as much as it should be, because we still hear these various clinical, convoluted, complicated terms that people put over it, and you're thinking, why it actually tends to cloud and muddy the waters compared to the patient named home. You know, we've discovered the condition. We named the condition before any of these other terms have been overlaid. And you can kind of imagine people tying themselves up in knots in these meetings that probably involve zero patients or anyone with lived experience, you know, debating, is it post COVID 19 syndrome, or is it post COVID condition? Or is it post acute COVID syndrome? I can't remember what they all are. It's a bit like the People's Front of Judea and the Judas people front. Just call it long COVID. And have done, yeah, simple yet effective, isn't it? Oh, yes. And it's easier to tweet about. It's fewer characters. Yes, exactly. I mean, the group has kind of grown exponentially, and it's a real community and a lifeline to so many people. But it's also evolved a lot over the last 18 months, hasn't it? Yes, it certainly has. As of today, we're 45,000

Unknown Speaker  
members in over 100 countries and territories. So we've had, from very early days, we had an international team of moderators and admins who are an amazing bunch. It's so special. What we have actually, it's amazing. So they are time zones spanning, and we each contribute what we can. There's never been a formal system of you're on duty at this time or that time. It's just whoever gets stuff does it. We've evolved our rules over the months. It's actually quite hard to do that because you have a character limit and trying to sort of capture all the different versions of things we need to try to manage in the group, because all these sort of eventualities would appear, and you're actually we need to include a rule that says no, whatever it is, no, talking about either mectin or know, whatever it might be. So our rules have evolved. We have very strict joining criteria. So the group is strictly for people who have long COVID themselves, defined as four weeks or more of symptoms, or they could be directly caring for somebody. So if their partner or elderly relative or child, whatever, is not a Facebook user, then they can directly be caring for someone, and they have to sign up to our rules, and they have to tell us how long they've been ill for and why they want to join the group. And then every single post is checked and either let through or not, because we really want to keep it a safe space. So from the outset, it's been a private group, which was always very important to me when I set it up, because people share some extremely vulnerable information that they wouldn't want family members to know about for fear of worrying them, or they wouldn't want employers to know about for fear of stigma and that sort of thing. So it's always been a private group. We didn't do this at the beginning, but we not long in, we've decided to.

Unknown Speaker  
Impose the joining questions and the every single post being monitored. Facebook doesn't allow you to monitor every single comment in a group of 45,000 I don't think it might make our heads explode to do that, but we do have quite a extensive suite of keyword alerts. So we do get alerted if certain words are used, and we're able to then either remove comments or switch comments off, or direct people to help if people are suicidal, for example. And over the time, we've developed quite an active range of social and well being activities that we run in the group. So they evolved over time. And I think at the beginning they were probably a bit more ad hoc. And I remember, for example, on Christmas morning, I help a zoom social for members who might be on their own, and spent New Year's Eve midnight with the group for anyone again, who wanted to drop in. We had Carol singing session as well and a quiz, and we have men only zoom chats. So now the current program is we have a couple of weekly zoom socials for anyone to drop in from wherever they are around the world. We have long COVID Choir, which I set up with Zoe chalana, who's a choir director and a friend of a friend in real life. We have chair yoga, and we have opera breathing, and then we sometimes have sort of one off events and webinars that might be happening. For example, advice on how to claim benefits or share the details that might be going on, such as World Health Organization, webinars, etc. And people really love connecting. It's actually really moving. People say, Oh, I've never spoken to someone else who's gone through this, or I live alone and I'm really isolated. Or actually, I've got brilliant care that no one can really get this unless they've been through it, and the warmth, love and bonding that we have, even though our group is enormous, actually, there's lifelong friendships have been struck up and we have and it's not people moaning on Yes, there are people who were crying out for help or saying, has anyone else had this weird and wonderful symptom? But there's actually lots of dark humor and warmth and fantastic talent. So a few days ago, we had this wonderful woman Ned shared these little Lego scenes that she's built highlighting her long COVID experience with her GI issues. So her little character sitting on the toilet with toilet rolls and things made out of Lego. There's lots of beauty and tenderness. They were amazing, weren't they? Oh, you saw them. Yeah, that's really stunning. And people's poetry and art, and you know, as I say, just such tenderness and love and warmth just feels like wherever we go in the world, we need to have some kind of funny handshake, or some way of identifying, Hello, people with long COVID, because I think you'd have somewhere to stay. If ever traveled anywhere around the world, there'd be friends there. I mean, yeah, that sense of community and people that get it, I think, is very important, isn't it? Because if you haven't experienced it, then can be understanding, but you can't understand in the same way, yeah, because it's so weird and wonderful. Yeah. I mean, we as patients collectively knew about the symptoms. Still do know far more about the symptoms, despite the best efforts of the medical community and researchers and so on, and things that you've never even yesterday, I had a symptom that I've never had before. My tinnitus was absolutely raging. I had a day in bed feeling rubbish, and it felt like somebody was sticking their fingers in my ears. I was like, What the hell is that symptoms, what on earth? And edsonton, where it felt like flutterings of a new baby when you pregnant, and your baby first starts kicking, and you feel these sort of weird flutterings in your tummy. It felt like that. And I could actually even see it. I could see a muscle in belly spasming. And then I saw someone on Twitter said, Has anyone else got this feeling. And few of us were like, yes,

Unknown Speaker  
then what the hell is this symptom appearing 19 months in out of nowhere? It's just weird, but it's just so lovely for other people to get it, because if you explain that to someone else, they'd have you section, yeah, it's definitely reassuring. You know, from the earliest days as well, we've worked with researchers. We contacted them and or they contacted us from again, the early days of summer 2020, so research involvement, a term I'd never heard before, is something that, again, has been really core to what we've done from the outset. So I remember contacting Dr Louise Newsome, for example, about the significant menstrual disruption we see in our group, or people like me, whose symptoms would flare up enormously every month around the time of their period, and we've been trying to work with her ever since to try and find someone who cares enough to research this. You know, there's been a few surveys and questionnaires about it, some of which we've designed ourselves with Louise, but in terms of actually somebody getting under microscopes and taking, I don't know, biopsies and samples, we are yet to find anybody who's interested to do that, which is really quite gutting over 18 months if we started trying to find funding for such things. So I suppose our key activities are the peer support advocacy, which is includes working with policy makers on the NHS England Task Force and on the Department of Health and Social.

Unknown Speaker  
Care long COVID Round Table, as well as our return to work activities. Leslie mcnivin, co founder of long COVID Scotland, chairs our fabulous team of people who work in employment and benefit areas. And research involvement is the third pillar of what we do. Yeah, because there's so many different angles to it isn't there. It's not just about symptoms. Long term illness, you've got the employment issues, and with a new illness like you say, you need research too to try and work out what's going on.

Unknown Speaker  
We'll be right back.

Unknown Speaker  
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 COVID breathing.com or email long covidbreathing@gmail.com

Unknown Speaker  
to start your breathing journey with us.

Unknown Speaker  
And there's been actually lot of offshoots, if that's the right word, people who were members of our group have set up groups of their own when they realized that there was a need on the support side of things, I think it actually works really well to have such an international group as ours, because there is such learnings of how different countries approach this. But when it comes to the campaigning and advocacy side of things, you obviously need to do that based on how health services and governments are structured. So for that reason, you know Leslie and Barbara and Tess and probably others set up long COVID Scotland, similarly long COVID Wales. I know I've had messages from people who were in my group, but obviously, a group of that size, I can't possibly keep up with who everybody is, and even if they introduce themselves, but I've had messages over the month saying, I've been a member of your group since whenever. And inspired by that, I've set up a group in Czech and Slovakia and Austria and, well, the long COVID Kids, that is a really important group that set up, I think, in the autumn 2020 they'd met again in our group, Francis Simpson and Samuel McFarland, and recognized a very important need. I guess, what we've always done in long COVID support is campaign kind of universally for everybody. But some in front rightly identified that there's issues here that are specific to children, because children have been hugely overlooked as being affected by this. And of course, there's whole different ways to campaign and lobby and advocate, by working with schools and education unions and whatever. And of course, the pediatric pathways are often different as well. You know, we work really closely well. We kind of do and we don't. I say that we're almost too busy to even communicate with people in our own teams. Never mind people across other organizations. But no, we do. We myself and Sammy from long COVID kids. We're on WhatsApp to each other multiple times most days, actually, about one thing or another. We do compare notes a lot with our sister groups, as well as with long COVID physio who do amazing work. I think the long COVID community is absolutely special and unique. The relationships we have with groups around the world, compare notes when it makes sense to we sign letters or whatever it might be when it makes sense to really is such a collaborative space because we all want the same thing. It's not a land grab or pushing other people out the way. If everyone contacted me in the media or something, I would say, Have you spoken to such and such? You really need to speak to them, because they are the person to speak to about. You know, whether it's kids or employment issues or research or whatever it is, it's very much about getting the best for as many people as we can, including ourselves. This is not just all selfless. This is for ourselves and our own kids as well. Well, exactly, we do have a vested interest in it. But as you say, there's one goal, isn't it, really, and they've got all the collaborations and connections and relationships with all these different people that have been built up through the group. It's really awesome. We just have to hope that the more we shout, we might get listened to. Well, I mean, I think we have already been listened to a lot. People in the scientific community or policy makers have said that they've never seen anything like the patient movement. And I'm not trying to claim any credit for long COVID support, or me as an individual, I'm absolutely not. It's been very much a collective effort. And, you know, even if it's some knackered person retweeting something, because that's the only thing they have the energy to do, or they mention it to their employer. Or, you know, even these micro, tiny actions can have, collectively, a huge effect. You know, takes a lot of snowflakes, and we can have a lunch to coin a probably a terrible cliche, but very, very much believe that everybody can do something. And I think this long COVID movement is testament to that. So, you know, we've achieved the establishment of the term.

Unknown Speaker  
Term, we've achieved the World Health Organization's recognition of it. And in fact, they used the slogan that Barbara and I came up with on the phone all that time ago. Rehab research recognition mantra is what they've used to theme the three webinars they've held on long COVID. We actually helped set up the first ever International Research Conference on long COVID Because of a cheeky question. I'm a bit of a cheeky one. Sometimes if people contact us, I go, ah, but we were wondering about this, is there anything you can do to help? And it's amazing how people have been so fantastic and wanted to help. So we were contacted, I think it was Gail Carson and Louise Sigfrid from Missouri, about, could we help with some sort of research? Yep, that's all fine and great that actually we've had an idea that we want to do this. And bless their hearts, they made it happen. And, you know, with the wider team, and so we co organized this, the long COVID forum in december 2020

Unknown Speaker  
which had speakers from Cameroon and Hong Kong and Canada and all sorts of countries around the world. It was amazing, but it was designed entirely around patients. We had two short days with big breaks in between that had videos of patient testimonies from around the world, showing the effect it had had on them. Patients were involved in every session, speaking or CO chairing, or the part of the Q and A panel. You know, it was our idea to run it, and it was an absolute dream of how to properly co produce and put patients at the heart. And we were absolutely thrilled that Dr tedroth, the World Health Organization Director General, opened the proceedings, and Margaret O'Hara from long COVID support, spoke immediately after. I mean, that's a good day at the office, right? That's incredible. And like you say, getting the patience at the heart of it is so important, isn't it, because we know so much more than anybody else does. Yeah, and I think that's something that I really want to be a legacy of. This actually, is that we collectively have been involved in so many research studies, or indeed, notably, not included in some, and I think we've seen the good, the bad and the ugly, and you'll have seen them the same as we have, I'm sure. When you get sent to the survey to fill in and you just think, oh my god, your heart sinks. And you think, this has not been seen by anybody with lived experience of long COVID Because they're asking the wrong questions in the wrong way, of the wrong people at the wrong time, whatever it is. And you think, what an unethical waste of public funds and publicly funded expertise. I can't even describe the word what it is. It's I feel anguished, I feel appalled. I feel angry. We have got so little research funding in the scheme of things, and that needs to absolutely be directed to what is on the critical path to helping people get treatment. We don't need any more symptom tracking apps. We don't need anyone else to tell us what symptoms we have. We know this. The best research paper on symptoms was done by the patient led research collaborative, and it is unequaled in terms of the scale and the number of people, but also the geographical diversity and the number of symptoms that were trapped and identified. So we know what we want people to look at. We know how we want people to look at it, and we want to make sure that there are learnings across other chronic illness in both directions, as in, we want to learn chronic conditions. Yeah, I can't emphasize enough the importance of the Nothing about us, without us mantra, and including patients from the beginning as equals at the table, because we've seen too many times what happens when that doesn't happen and it's inefficient and wasteful. And actually, when there are literally millions of people around the world affected, it's criminal research. It's not an academic to get another paper in BA or whatever it's it's there to directly help patients, and if it isn't, then we don't want it. Absolutely. It's just a waste of time otherwise, isn't it? And money, and it's often public money, and I don't want my money going to those sorts of projects.

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We'll be right back.

Unknown Speaker  
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 something.

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I hope you enjoy the episode. Thank you so much.

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So I mean, I guess you're always looking for more people to help. How can people get involved? Is there anything that they can do from the sofa? There's plenty that we can do from the sofa. The term I used in the early days we were kicking ass from under our duvet,

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as I mentioned before, you know, these tiny, micro actions can all add up. So talk to your auntie about it, talk to your employer about it, talk to your neighbor over the fence about it. Retweet or like or share on Facebook and Twitter and Instagram.

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Am. Share a newspaper article you've seen about it with your parents. Make sure you get vaccinated. Make sure that you do what you can to prevent more people ending up like we are. It's about to say we're walking public health messages, but actually, a lot of us are not walking myself, being one of them. Can sometimes walk a little distance, but often I can't. You know, a lot, of people in my own personal network said, You're a warning as to why I need to keep wearing a mask. I'm like, Yeah, that's right. You do not want to end up like myself or my children. All of that are tiny ways that people can help, if people would like to help more actively again, joining social media, or indeed, maybe in real life, even when it's safe to have peer support. If you see someone who's really struggling that day, just write them a few words of comfort and reply to their post. So it can be simple as that, and you can actually really lighten someone's load, but in terms of what actively helping, then we have a subgroup of people who are shown an interest in contributing to research involvement. So when I say research involvement, I'm not talking about completing surveys and being a participant. I'm talking about actually helping to advise on how the studies might be designed, how the questions are asked, all that sort of stuff. But actually being a participant and filling in surveys is a way that people can help. Often handy to have more help moderating Facebook group, for example. Again, the commitment can be as little as anyone is able to give people dip in and out, because we know what it's like. We relapse, we go back to work, we fail to go back to work, we try again. Our kids fall ill again, whatever it is. So we're all sort of dipping in and out around our other commitments. But it's always handy to have more people moderating and more people coming up with ideas for what we can be doing to thread the word. So the way to get in touch to head to our website, long covid.org

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which I've been tasked with trying to review it and update it, because, of course, these things pretty much are out of date as soon as you publish them. And it's actually a website that's recommended by lots of health professionals, so we need to kind of make sure it's as good as we can be. But we're a bunch of ill volunteers doing this on a largely unpaid basis, and so please bear with but we put stuff on there that people in our group have found the most useful resources. There's no magic wand, there's no cure, and plus, we're not in a position to advise, but we simply share resources that other people have found helpful. And on there, there are also resources for employers, for researchers, for health professionals for media, as well as for patients and carers. But on there, there are links to our social media, including our private COVID support Facebook group as well as we have a COVID 19 research involvement Facebook group that Margaret O'Hara set up because she works in patient involvement, public engagement and research. It's a professional line of work, and so she set up this group, I think, in summer 2020 and that's a place where researchers can interact with patients and share knowledge and opportunities, whereas our main Facebook group is very much private, although we do have a public page for people who are interested to follow. I'll put links to all of that in the show notes, so if anybody is wanting to follow any of those links, hopefully that'll make them easy to find. We do an ongoing survey into patient experience, unfortunately, only in England, because, as you'll know all too well, the devolved nations don't have long COVID services in the way we do in England. Yes, unfortunately, no. We're very, very grateful for those, albeit they're not necessarily what you might hope. And I don't mean this to sound critical. I think the NHS in England has done amazing work at getting these things set up so quickly, but until research catches up, it's really tricky to know what to do with us. And obviously there are huge workforce issues and skills issues, capacity issues in the NHS. So there's only so much that can be done. And clearly, the number of people who are affected by long COVID swamps the capacity that exists, which was designed for 68,000 people, and there's well over a million with long COVID and growing every single day. I'm so desperate to do more to prevent more people ending up like us. Yeah, and that's the problem, isn't it? Every however many cases, you know that there's going to be a trickle of those people coming into the support group over the next few months, and you just want to be able to avoid that. It's more than a trickle. Sadly, every time I go to my phone or laptop, there's people queuing to join. And it's good that people are finding us, but ideally we don't need to exist. I mean, we're actually about to launch a leaflet for patients, because we believe that a lot of people may not realize that the strange symptoms they're experiencing might be long COVID. And it's not to say we want to go around making everyone be afraid that they've got long COVID. It's actually the opposite. It's to say that if you've had new symptoms that you've had for four weeks or more since either known or suspected COVID 19, it might be long COVID. This is where you can come for some more information and for support, and actually always seek help from a medical professional if you're worried not.

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We want to leaflet to list over 200 odd symptoms, but we put the kind of most common ones for children and for adults, and we sign post people to non covid.org and non COVID kids.org and we are planning to disseminate this. We work with an organization who has fantastic links to community pharmacists across the UK. We also plan to share it online through our existing networks, and ask people in our group to share them with whatever networks they're in, be it a sports club or chess club or faith groups or whatever it is. We also want to make sure we get it out through food banks, you know, anywhere, to try and reach people that we're not necessarily reaching and who may not be aware that strange symptoms. I've got friends of mine who know what I do and who know about long COVID, more than most might have been expected to be, because of my work, who still didn't realize that their strange combination of symptoms that have developed gradually over 18 months actually added together look like, on balance, that they probably are long COVID. So I think there's a lot of people out there who don't know that well. Yes, it's such a varied illness with so many different symptoms that people can have any number of any combination of them. Indeed. I mean, even just before I came on this call, I had an email from a colleague saying, Oh, I'm off with this terrible cold that's doing the rounds. And it may well be a terrible cold, but part of me does think that a lot of these terrible colds and inverted commas may well be undiagnosed COVID Because the tests are so unreliable, and we knew that even before the recent scandal with the negatives in the laboratory in Wolverhampton. If I were in charge of public health messaging, I would say something along the lines of, if you're not well with anything, if you can afford to do so, I would also put in place financial help to help people isolate if I ruled the world.

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But if you're unwell with anything, you need to behave as if you may have COVID, because chances are it could be COVID, and please isolate and your family members, etc. And I would provide financial support for people to do that. I don't think it needs to be complicated. It literally is that simple. If you're ill, look on this website and actually err on the side of caution and stay home. We can send you food packages and here's some money to tide you over if you're going to lose out financially by isolating Exactly. It's better safe than sorry, isn't it, when it comes to COVID. Well, it really is, because we have no idea of the burden. You know, people talk about policy making being based on whether the NHS is overwhelmed, but the definition of that is, it is very narrow. It seems to be beds taken up by people who have COVID. Well, the burden on the NHS of the multiple visits to GPS and A and E that people with long COVID must be doing because they are absolutely petrified and don't know what's going on with them. They may or may not know they've got long COVID. If you look at the whole system, cost of the lost tax revenues, the opportunity cost of what some of us could have gone on to do, the setting up of businesses and all these amazing ideas and autistic projects and all these things that may or may not ever be able to happen now because of people being disabled by this illness, we wanted to look at the whole system cost, both as a snapshot in time, but also longitudinally over the following decades. It seems absolutely even more. Is it criminal? Maybe that's not the right word, but it just seems absolutely horrific that we're not doing everything in our powers to prevent this. I don't think it's rocket science. The virus can probably enter the body, largely through your nose in your mouth, you know, in an indoor space or close in an outdoor space with someone else. So I don't think it's beyond the wit of man to actually wear masks as much as possible. And for all age groups. You know, in other countries, you see little children, you know, aged five or whatever, wearing masks perfectly happily, even in really hot and humid countries like Mexico and wherever, where they wear them outdoors as well as I understand it. So I think mask wearing needs to be absolutely rolled out. Indoor Air Quality needs to be right up there, and not just CO two monitors that may or may not eventually be rolled out, and even if they are, that's not telling you how to solve the problem. And working from home, where you can all that stuff and isolating if you've got anything, you know, if you're slightly under the weather. On the side of caution, you know, my sore throat that wasn't the sore throat turned into so far 19 months and counting of long COVID. So I really hope that a legacy of this is that people wear masks if they've got anything wrong with them at all, and in a way that we now see in the Far East, you know, the countries that went through SARS one, it's now culturally a done thing to wear masks if you have what you think might be a mild head cold. But I think that should be a legacy, and no longer having this culture of presenteeism where you drag yourself into the office and thereby spread the germs to everybody on the bus and in your office Exactly, exactly. If anything good can come out of it, maybe it would be that, yeah, as well as all our wonderful friendships and our long COVID choir that we've formed, and the reforms that I'd love to see to research, etc, etc, I think there's a lot of good that can come out of this. Actually, one thing I'm really keen to push on as well is greater empathy and understanding of invisible ill.

Unknown Speaker  
Thus, but also invisible pain, and whether that be people grieving because they've lost someone during the pandemic, whether or not it was to COVID, if they couldn't be with them because of restrictions or protections, as I prefer to call them, or the person couldn't get care because of the hospitals being overwhelmed, or people who are burnt out and had to give up their work because of the stress being on the front line, I would love there to be greater empathy and understanding. We need to heal collectively from this. We're all touched by this in one way or another, to greater or lesser extent, and just because we look and sound normal, we have no idea what other people are going through. I think that's incredibly key. Well, thank you so much for your time today and for everything that you have done and are doing, I think you're an absolute inspiration. So thank you so much. 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.

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The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself.

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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

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you.

Transcribed by https://otter.ai