A Conversation with Gez Medinger - Expert Patient & Co-Author of The Long Covid Handbook

In this episode,  Gez Medinger shares his insights from years of self-experimentation, patient-led research, and reflections around Long Covid, while Hannah and Katya struggle to get their words out and try not to fangirl too hard. 

Links to all resources discussed are available at boundedenergy.co.uk, as are full transcripts for this episode

We want to hear about your experiences! What do you do with your bounded energy?
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Transcripts available on our website: www.boundedenergy.co.uk

Theme Song: Harry Gould
Artwork: Ellie Atkinson

Transcript

Katya  00:00

 I feel lucky because I've seen a lot of his videos and stuff... I know he's quite a relaxed, funny person. Yeah. But I also feel really, I feel nervous because this feels like the first episode that's not in our control.

Hannah  00:20

I know. Yeah. And especially where there's a time limit. That's where I was like, Oh, we got 45 minutes! That for me feels like - oh God, because it feels like we've got to try and make sure that we don't go way too off topic and that we're quite, you know, correct. concise. 

Katya  00:37

And historically, Hannah, we speak so slowly, like everything is so edited for the podcast, we'll have like two hours of conversation normally that will become 45 minutes and it's the silences the repetitions, the erms the tangents! (both laugh) . I was gonna say I also realized like, you can't be in bed. Neither of us can be in bed for this one we have to be ...

Hannah  01:00

Oh yeah like look our best, like the sitting up at a table. And yeah, looking professional! Yeah, one thing I think we mustn't do is we mustn't be tempted to get sidetracked talking about like, Oh my God. Yeah, that's like my experience is like, we have to literally like get as much as we can from him.

Hannah  01:23

But yeah, like, imagine how, how inappropriate it would be if we had him on and then just talked about ourselves. 

Hannah  01:31

Yeah, exactly. 

Katya  01:32

Yeah, that's so interesting, because it's interesting that you wrote a book just because I have a diary. And in my diary... (laughs) yeah. Yeah, that'd be really inappropriate. 

Jingle  01:42

I'm having a good day /minute /hour /week, what to do and how to be with the beans given to me, me and my bounded energy,

Hannah  02:01

Medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.

Katya  02:14

Hey – Katya here and thanks so much for joining us today! Well, I am so so excited to share this episode with you, in which we speak to Gez Medinger, co-author of The Long Covid Handbook – the essential guide for anyone living with Long Covid (and those are my words, not a subheader)  I read the Long Covid Handbook at the start of December 2022, a few weeks after Hannah and I released the first episode of this podcast. The book had actually sat on my shelf for a few months before I opened it up, and the truth is I think it had been a fear of what I might find there that had stopped me diving in, and really from engaging with any of the Long Covid research (not that there was that much out there). I’d been the type of long covid patient who sees words like dysautonomia, mcas and the maybe after a brief google search in which I’d stumble on words like ‘blood clot’, ‘no known cure’,  I’d run back to the comfort blanket that was my ignorance and denial. The process of making this podcast and then realising that people who were not my parents were actually listening to it, gave me a sense of renewed responsibility – how could I speak about Long Covid if I wasn’t up to date on the research? Or if I didn’t understand the experiences of my fellow sufferers?  And so I bought Gez’s book. And I’m so glad I did.  

Katya  03:33

The Long Covid Handbook is like a fast track course in Long Covid science, a how-to for managing symptoms, and a source of profound reassurance and comfort. As someone who has long covid, my reading experience was one of closing the book at times and sobbing in relief – ‘it’s not just me’, ‘I didn’t do this to myself’, ‘this isn’t in my head’. If you have long covid and you’re wondering how to help yourself, read this book. If you love someone with long covid and you’re wondering how to help them? Read this book.  Gez Medinger is referred to as an ‘expert patient’ because of his level of engagement with both the long covid community and the medical community. Two months after recovering from his acute covid infection, Gez began documenting his experience and sharing the relevant science on his youtube channel. Aware of the glacial pace of scientific research, Gez began carrying out patient led research through social media platforms – asking fellow sufferers about their backgrounds and experiences and publishing the results. As a result, Gez became the voice of the Long Covid experience for many – because he was essentially a funnel and a microphone, capturing the long covid experience and sharing it with the world. Many sufferers (including myself) feel a sense of gratitude to Gez, because it’s noise made by people like him who have spurred on the remarkably quick wave of long covid research.  

Katya  04:59

My reaction to LC had been to ignore and deny it for so long (I guess its very hard to be curious about something that you perceive as ruining your life), and after listening to this conversation with Gez, I wonder not if this wasn’t childish of me. The thing that struck me with Gez was his seriousness. Don’t get me wrong, he’s a funny and playful man for sure, but he took long covid seriously from the get go and in doing so he took responsibility for himself and his recovery. And he’s an inspiration to all of us.  Anyway, in this conversation we discuss Gez’s background and experience of long covid, how the long covid handbook got written. long covid and mental health, differences in the male vs female experience of long covid, what Gez does now to manage his symptoms, the idea of a holiday cure, and more. Thanks for listening

Hannah  05:57

Nice to meet you. I'll go first. I'm Hannah. I'm used to saying my little spiel that I'm a speech and language therapist, but it doesn't matter. Because yeah, I've had COVID for a few years now. And Katya and I've been friends for a long time, and both ended up with it. And yeah, Katya tipped me off to your book, which I've been listening to on Audible. Also. Yeah, it's been a great experience. I've got Yeah.

Gez  06:27

So you've got used to my voice, the sound of my voice as well as what I've been saying.

Katya  06:34

Yeah, I think it's like, it's kind of surreal when you meet someone whose voice you've been listening to, like, in bed. I, because I've been reading the book in the day. And then listening to it. Like in the bath and in bed. Yeah. So.

Gez  06:50

Oh, yeah. Yeah. Well, it's funny actually. Because I mean, I, my history is in film production. So I used to edit documentaries. And I'd be just going through hours and hours of footage with people who I'd never met. But you'd get to feel like you knew them intimately. You'd cut all this stuff together, and then you meet them in real life, and they don't know who you are. It's like, but I know exactly who you are. You know, it's it's a slightly mad thing, isn't it?

Katya  07:15

Definitely. Yeah. So should we just acknowledge that, like, Hannah, and I have never done an interview before? And 

Gez  07:23

that's fine. 

Katya  07:24

Yeah. Yeah, I think Hannah, Hannah has a confession as well.

Hannah  07:27

Oh, yeah. Yeah, I'm having a really bad long, COVID day. So I feel like my brain is only really half there, or probably less.

Gez  07:37

If there's two people who understand what that's like, it's probably me and Katya!

Hannah  07:41

So yeah. Katya's gonna be getting me through this next four to five minutes a little bit

Katya  07:46

 Well, you were saying like the chances of three people with long COVID or being bad enough to me and speak feel, you know, yeah, I'm like,

Gez  07:55

it's just mathematics. Right? If the odds of you having a good day is one in three, and then all three of you have got to have a good day. And that's one in three cubed. So that's down to like

Katya  08:05

 one in nine . 

Gez  08:06

No one in 27

Katya  08:09

I was a math teacher for four years. I'm blaming that one on Long COVID

Gez  08:14

Definitely do. 

Katya  08:15

Yeah. So confident. One in nine! (laughing)

Katya  08:19

Yeah, I'm Katya.  So I work in Finance. But I've had long COVID for a year and a half. 

Gez  08:34

Have you been able to work? 

Katya  08:35

Yes. But it's been brutal. And I've just gone part time, which is great news.

Gez  08:45

The compromises have to be made. And you either have to give up your entire social life or your entire exercise life or your entire family life or whatever, to be able to just support the work. And even that might still be too much, you know? And even like, how do you care for yourself? How do you get to work? How do you do your shopping and do the washing and do all the rest of that crap, right? That's where it gets. That's where it gets really hard if you're trying to work at the same time. So I honestly I think going part time is a really good thing. And I think you'll start to see the benefits of that soon. Hopefully, just creating a bit more rest space for yourself will make a big difference.

Katya  09:22

Yeah, that really touches me because I sorry, Hannah.

Hannah  09:26

I was gonna say it was a really big deal. Wasn't it for your Katya to actually pluck up the courage and have that difficult conversation with your employers? And yeah, it's really great.

Katya  09:38

Yeah, and explain that, like I needed it to somebody you didn't really know what long COVID was,

Gez  09:44

I was gonna say, how did they take it? 

Katya  09:46

Well I mean, they were lovely. That's the thing like most people are lovely once you educate them. So um, yeah,

Gez  09:56

it's still hard to educate people. Oh, you know, I mean, I don't know if it's something you want to talk about in the podcast is how, why does some people get it and other people not get it? Because you can explain until you're blue in the face and some people still just won't get it. Some people intuitively do but some, it's just a lost cause. Yeah.

Hannah  10:13

I don't know why. I don't know why that is. I really don't

10:18

 I think it's just empathy levels. Some people who are not particularly empathetic, aren't very good at putting themselves into other people's shoes. And if they've never been ill, at this level, which most people haven't, it's very hard to imagine it. I find it hard to imagine how bad a really bad day is when I'm on a good day, because my brain kind of blanks it out when I've been...

Hannah  10:36

Totally Yeah, yeah, yeah.

Katya  10:37

I always think that like, for me, personally, it took me over a year, really, I would say to be confidently saying, I have long COVID. And these are my needs. It probably took me four months before I was even thinking, yeah, like, I'm actually ill, I'm not like, I'm not going to be better tomorrow. And so that, I don't know, I definitely have that expectation speaking to other people that if they don't get it in an hour, they're a lost cause. But it took me so long in my own body,

Gez  11:06

I think I think it takes a year to get your head around it. And until that point, you're basically battling it. And you are in this state of bouncing between denial and anger, and a little bit of bargaining in there as well. It's those three primary stages of grief. And it does take a year and some people don't come out of that some people are still it almost three years now we're still there. And I think you do eventually have to come through that before the nervous system can calm down and your body can start to, you know, bumble, its way, hopefully back to some form of homeostasis again. But I think whilst you're in this wound up state of anger and bitterness and fight, it's really hard to let the sympathetic nervous system calm down, which has already gone at, you know, a wall in all of this. 

Katya  11:50

Yeah, yeah, that's something I find I noticed I find very hard to watch in other people because I struggled with it myself. I have a friend who has long COVID. And I can see that he has long COVID. But he keeps talking about when the summer comes around, he'll feel better and and watching that stage of denial is so hard because like, I mean, I would never shake him and be like you have long COVID mate. But it's brutal to watch because it was brutal to go through. 

Gez  12:21

For what it's worth, he may feel a little better when summer comes round. So seasonality is something that's relatively common in MECFS. And also long COVID. And it's not entirely clear, the wheres and whys of it may be connected to vitamin D levels, and serotonin levels and everything else. But generally speaking, as a group, we will tend to feel a few percentage points better in the summer, or like I've just been away in the Alps for a month, which has done me a world of good, yeah, I can talk about that at length and the reasons why or why not. It may be a good idea for others. But

Hannah  12:56

Well, I think this is perhaps a good segue then for you to introduce, introduce yourself for our listeners. Yeah, I think I want the listeners to get a sense of who you are as a person and not just the voice of Long COVID. So could you kind of speak a little bit about your background. And then what brought you to your experience in the Alps. That would be great.

Gez  13:19

Yeah, so I've got so I mean, depends on where you start, right. I grew up in Manchester. I did A levels of maths, geography, physics, General Studies, went to Oxford studied engineering realized I didn't like engineering very much. It's just really hardcore maths. So I went skiing for two years after I finished my degree, came back started a production company up with a couple of friends filming extreme sports. And that was sort of sort of I got into that, by consequence of having spent a couple of weeks in the Alps. And then I was in the film industry for 20 years, or close to 20 years, and felt very passionately about it worked incredibly hard traveled all around the world and had all sorts of mad, ill advised things that don't meet any health and safety standards whatsoever. But I made a feature film back in 2014. And I was in the process of trying to get my second feature film made. And I was trying to have a couple of projects in development and I was out in LA trying to get those off the ground in 2020 and came back to London in March 2020 and went into the office to meet the rest of my crew I work with freelance now and caught COVID in an office in March 2020 along with 90% of the rest of London. 

Gez  14:34

Difference being my acute infection wasn't too bad compared to the others who were having a horrible acute infection sweating through the night and having to be looked after and the rest of it and I was like still doing some work. I'm okay. And and then, okay, so like many of us, I got a little bit better after that acute infection before it suddenly got much worse. And for almost all of us see, we can sort of identify some trigger that preceded that worsening of symptoms that took us down into full blown long COVID usually exertion, but sometimes stress, something like that. Can't quite identify exactly pinpoint what mine was. But I was back trying to run again consistently, and feeling terrible after each of them. And I think that just contributed to falling off the back of the truck. 

Gez  15:25

And it was, so for people who don't know me, I got involved in long COVID, it started off with a YouTube film I made in April 2020. And the reason why I made that film was because I had a very ... I had a symptom early on sort of four or five weeks after the initial infection. But I've only felt once before in my life. And that was when I had glandular fever for a year at university 212/0 years ago. And it was the only time I've ever felt this weird feeling in my throat. And, and it was kind of like the signature symptom of that illness where I was wrecked for a year. And I felt it again, like four weeks after getting COVID. And I was like shit. And that suddenly made me take all of it really seriously because I could see into the future, right, that symptom gave me a window into the future.  I was looking down a tunnel of a year or more of illness again, and I thought I can't be dealing with that. But I mean, in a sense, that previous experience gave me that privilege of having that sort of vision into the future. And that's why I started taking the idea of long COVID seriously, really early when everybody else was still going, Oh, I'm just a bit rundown or why am I not... Well, I'm going to get better tomorrow. You know, when I was like, I don't think we are, I think many of us are not going to get better tomorrow or next month or the month after that. 

Gez  16:41

So I made this film on YouTube, looked at the science about what we knew about post viral fatigue, other post viral conditions and what we knew about SARS Cov 2, and basically just put it out there thinking does anybody else...? Am I the only one? There are others out there? And turns out yes, tens of thousands of people found the film really quickly. And then I just went down the rabbit hole like Alice, just digging, researching, doing my own patient led research to try and work out, try and find answers to the big questions we all had at the time when the medical establishment had absolutely nothing for us. And ended up making 90 odd 95 films, I think,  now for YouTube, and have also written a book with Professor Danny Altman, who's a professor of immunology at Imperial. And that's been published by Penguin, and it's called the Long COVID Handbook. So that brings us kind of more or less up to date sort of 90 films on, one book later, after sort of COVID sort of ransacked its way through the world in March 2020. And I haven't done any filmmaking apart from the YouTube stuff. So I've not done any of my old job in almost three years now. And that's just because I haven't been up to it. Still, unfortunately.

Katya  17:50

GoshI feel like that was the most succinct pieces of speech we've ever had on the podcast. We normally remove like an hour of silence. I wasn't going to mention this, but I saw After death. I did. Yeah, I love horror. i It's my favorite genre ever. I had to be careful. 

Gez  18:11

Did you see that before all this or after you heard of me?

Katya  18:15

Oh, it was after when I was reading the book. I actually had a delay in reading the book because I stopped to watch the film. And the shocks. One of my long COVID symptoms that really gets in the way of my love of horror is that shocks give me nerve pain. Yeah, I don't know. 

18:33

I mean, again, horror is unfortunately ....I mean I love horror movies. But they're not ideal for long COVID because there's sympathetic nervous system activating, right, and we're already stuck in this mad state of fight or flight. So if you're watching a horror movie, now you've got to be totally Zen about it. It was weird, right? I went through, you know, I went through  every single horror, every single horror that came out for like 10 years and watched everything. And I got to the point where I was pretty hardened you know? 

Gez  19:00

I mean, Hereditary in the cinema had a couple of moments that that got me a little bit. But yeah, it's pretty good. But But generally speaking, nothing. I was pretty jumpscare resistant and nothing really creeped me out. But I watched the Ritual again, again, (we've diverged to Horror here), quite a good horror movie about five years old, and watched it again with my brother whilst I was away recently, and suddenly, it was like I was 10 years old again, because I've been, I haven't watched any horror for three years because I've had long COVID and suddenly my body was like, ah, and it's funny just there's sort of a number of behaviors, which we ended up having to change as a consequence of, of having long COVID. And for me as a as a thrill seeker and and a bit of an adrenaline junkie before, I've had to be really really careful with all of that stuff because it does you no favors at all with long COVID. As much as it might still be fun when you can tolerate it, a crash is only just around the corner as a result.

Katya  20:00

 I've seen your first and your last YouTube videos. And I couldn't believe that the first one is made two months after you realized you aren't getting better. It was so, so quick. And so my first question was going to be how did you do that pivot? But I'm guessing like, you've already answered it, it was your background in documentary making and the experience of illness.

Gez  20:24

Yeah, so and, and it was funny because I was actually just about to start a YouTube channel up anyway. And I was going to be making films about running because I was a very keen runner before. And I was going to... Yeah, I'd already made or shot three or four running films and edited a couple of them, which I was going to put up on the channel. I'd done that whilst I was away in LA, and I was literally just about to upload them when I caught COVID. But then, so I was, I was already sort of tuned into like, uploading the stuff cutting this stuff and putting it up there. And I thought, Well, you know, I'll just, I'll make two or three of these films, and then I'll put the running contents up. But the running content became completely inappropriate for what the channel became. But I was on the cusp of doing something on YouTube anyway, which is why it almost seemed like a natural thing as a way of just putting the word out into the ether to see what came back. Because I could sort of put something on Twitter but I didn't feel like that would have the same connection. And I felt like I actually had something to add or to say about this in that first film. So yeah, I think I was already leaning in that direction. So it was only a mild pivot from making running films to making long COVID content.

Katya  21:30

And that first video is like, I know, we're going to move on to the book, because that's really why you're here. But it's remarkably, it's very clever, I felt like you were very cautious, to be useful and informative. Without I don't know, feeding into any kind of hysteria, I basically, I wish I had found that video at the beginning of my illness.

Gez  21:52

So I've always been really, really careful. And one of the things about the pandemic is big, loud conspiracy voices at either ends of the spectrum. As with all these things, the truth is usually somewhere in the middle but shrouded in cloud. And the real answer to a lot of the questions we've had is, maybe this maybe that, but we don't know. And that's kind of been the reality for most stuff out there. And ultimately, that's good science, good sciences. Could be this could be that, but we don't know, as opposed to definitely this because, especially when something new happens, because we don't have the evidence. So I've always been very, and I come from a scientific background, and I sort of consider myself to be a scientist by leaning as well as education. And I always wanted to try and make sure that my stuff held up. And that people like Danny, for example, would see it at some point and not think I was a crackpot. 

Gez  22:53

I was definitely, you know,  there's lots of crackpots, who have ended up earning a lot of money on YouTube during a pandemic. Dr. John Campbell is one of them who started off being relatively well regarded for his takes on medical things, but he's just lent right into the conspiracy theory side of stuff. And now makes millions a year, because of the clicks he gets from sort of funneling some of that sort of stuff. And that was always I was, again, like, one of the things on my channel, I don't know if anyone's ever clocked it, I've never once asked for a subscribe or a like, and I'm probably the only YouTube channel in history to have never asked for a subscribe or a like, because it's not been about, about maximizing the algorithm. It's been about just trying to provide a service and try and be a touch point for people who are on this journey. So that we can go through it together and try and collate our shared experiences, and learn something out of that, that helps each other.

Gez  23:49

 And that was also why the patient led research was so valuable, too. Because people I think realized early that I, they could trust me, I mean that with that data, if you know what I mean, I wasn't going to abuse it, I was simply going to aggregate it, crunch it and see what that told us about the community. And I think a lot of that was incredibly reassuring for people, especially early on, because, you know, early on, we were getting a lot of stuff where people would, you know, there were no tests for COVID and 2020. So you were ill, and then you've got long COVID Or what you thought was long COVID You go and see a doctor, and they'd be like, I don't know what this is. Did you ever have COVID? Well, have an antibody test. If people have antibody tests, it'd be negative and they go, Well, you never had COVID So this isn't what I didn't, we weren't even calling it long COVID cecause doctors didn't start calling it that for a long time. But but you know, so basically says something wrong with you or there's nothing wrong with you, but it wasn't COVID So there's this gaslighting going on as a result of his antibody tests. 

Now what was going on there? Why were so many longhaulers saying their antibody tests were negative, so I could collate all of that data. I could collate all of that data. And I could crunch it and I could compare it to other cohorts of people who were asymptomatic, I could find papers online. So I looked at the number of people who were testing positive for antibodies who had had an asymptomatic infection versus those who had cleared it quickly and not developed any long term symptoms, and those who had long COVID. And what we found was that only 22% of people with long COVID were testing positive for antibodies, compared to 50 odd percent of people who cleared it quickly and 80 odd percent of those are asymptomatic. So that would suggest there's something different going on in the immune response to the condition, you know, which is what is as indicator for long COVID, possibly a cause of long COVID. And hey, presto, finally, 18 months, two years later, we've now got papers, published papers in respectable journals going, Oh, look, the antibody responses difference, and long haulser don't produce antibodies in the same way.

 So all of this stuff early on was incredibly validating for people. So they could just say, Yes, only 22% of people do. You're not weird. It's not like you never had it. There's something funny going on here. So whether it was answers like that, or answers about who are the kinds of people who are being affected, because again, the early media was telling us that it was people who were overweight, or old or unwell or any of this sort of stuff who were at risk. And yes, that was the case for acute severe COVID. But the demographic with long Covid was completely different. It was people who were fit and healthy and the primate, their working lives, predominantly female, sometimes with a history of ATP. And this was something again, that's taken a while for the paper to catch up on now. But they are starting to talk about this now, which is the MCAT connection. And ATP is  is eczema, asthma or hay fever, for what it's worth, so if you've got any one of those, you're more likely to suffer from lung COVID. Any history of other postviral conditions, any history of autoimmune conditions in the family, or things like rheumatoid arthritis, all of these things are correlated, but not necessarily, you know, you don't need to have them to get long COVID Anybody can get it. But there's a few little things in there that are suggestive of links, which again, help us understand potentially some of the causality of the condition. So So yeah, so there was a lot that was really powerful early on in terms of having that audience and being able to, I guess part of it my own sense was my own….

People have said to me, why, how were you able to do this whilst you were so ill? ? And therefore you, maybe you weren't that ill? And the other question is, why did you do it, and there are a couple of parts to that, I wasn't able to do any normal work. This was the sort of stuff I could do in the little windows of function that I had during the day. And even shooting those films. I mean, if you watch back, some of the early ones I looked like I died about a week earlier. But those were the days where I felt the best. Maybe one or two days a week, I felt well enough to record a film. And in those days, I really did look good compared to the rest of the week, right? But I could do this work in my own time when I felt up to it. And the reason why I was driven to do it was because we have no control with this condition, right with most other conditions. Like you go okay, like me right now, because I'm gonna broken my wrist. So you break your wrist, you go to the doctor, they put you in a cast, or we do an operation, they give you some painkillers, and they say six weeks to get better, right? That's the prognosis. And that's the treatment. Long COVID. No prognosis, no treatments, probably no diagnosis in the first place. So you're left in this helpless position, where you've got no help coming from the medical establishment. 

And the condition itself is so capricious, and so nebulous, almost the way it strips you of your faculties in ways that are perpetually surprising and unexpected. And that condition itself, even gaslights you, you're able to do something one minute, and you're not the next, like your your state of function from, you know, between four o'clock and 4:05, might be wildly different. And not everybody can understand that. And people don't understand that you might struggle to be able to have a phone call, or listen to someone talking at you for five minutes, or you might struggle to read an email. So all of us have different types of cognitive malfunctions, that's the brain fog. But all of this stuff together just stripped you of all of his control. And suddenly you're adrift in your life. You can't do any of the things that you used to enjoy, or even the basic stuff, like eating the food you used to eat, because quickly, you realize that it now massively disagrees with you and makes your symptoms worse. I mean, good luck having a pizza and a beer for me, for example, that would blow me right up. So all of this stuff is stripped from you. And so what can I do? The only thing I could do that gave me some control back over this was trying to attack it head on and say okay, so it wasn't, you know, there was a degree of, oh, here's the brain fog. We're dealing with a altruism. There's a degree of altruism in doing this for the community, but it was also to help myself because it gave me a sense of control over this condition which stripped me of so much control because by I wanted to know these answers to, though I had the power to actually ask these questions. What are the questions that really intrigued me, and they'll probably intrigue other people too. And then I can throw these research questions at the community. And let's see what comes back. So I can't remember what question you asked me, I went on a very circuitous route there …

Katya  30:18

The question I asked was, How did you become so productive so quickly, after becoming ill, and you explained your passion for science, but also your just desire to be active, and to do something even if you can't, you know, hand people a cure on a plate, and I think, the long COVID Handbook as a as a book, and I really recommend to everyone that they read it, because when I read this book, I wept at times, I had to stop reading this book, because the thing that struck me was that feeling of oh, my god, someone has written down my experience. And this makes me feel like I'm not crazy. And I was able to hand it to my parents and say, can you just read this bit, please? Because I think that would explain stuff. And for me, I guess just thank you so much for writing this book. Because I feel that you're incredibly articulate for someone who has, like, if anyone's listening, we will not have edited any of Gez’s speech, because he doesn't repeat or go on to tangents. But yeah, you're incredibly articulate. And now I'm getting lost. But I felt that because you wrote this book, I feel that patients are had, and given the same level of respect as the voice of science, because you co authored this book with the leading expert in long COVID, Danny Altman. And so I just had this huge feeling of being seen. You know, apart from all of the usefulness, I think, the useful tips and the research that you provide, I felt validated, I guess that's the word. And so my question was, how did the book get written? Like, whose idea was it? Did you know, Danny?

Gez  32:21

Well, first of all, I just want to say, thank you for saying that awesome stuff about the book, my primary intention in writing it was to, I didn't want it to be an academic tome. I didn't want it to be to medical, fundamentally, long haulers are in this place out there, where we, as a group and individually are poorly understood. And what we are going through is likely to be one of the hardest if not the hardest period in our lives. And the support that you get during that period, and the people around you can be quite mixed. And because people don't understand just how severe it is, because you might look normal. And in any given five minutes, interaction with somebody, you might seem normal, they can't see that you're in the state that you're really in, they can't see that after that fun interaction, you're gone. And you have to go and lay down for three hours or you have to sleep or whatever it might be. And, you know, like, I don't know if I mentioned in the book, but I managed to break my pelvis in September 2020. And people immediately understood what a broken pelvis was. But I was saying to people, and they were like, Oh, my God, that's awful. How can we do? What can we do, you're in a hospital, all the rest of it. And I was like, this is fine. Like, honestly, break my pelvis, let it heal, and smash it to bits every six weeks and put me back in hospital, I would rather do that than have long COVID. Long. COVID is several orders of magnitude worse than a broken pelvis. 

 But because it's invisible, people don't get it. And so the primary thing I wanted with the book was to be able to create something, but even just in its existence, the fact that the book exists, says you know what, this condition is real, the fact that penguin have published it, so this condition is real. That's the first part of it. And the second part of it is that people can read this and know that they're not the only person experiencing this unfathomable shit, which is what it is right? And it's so it's like someone has pulled the rug out from underneath you in such a spectacular way where everything that you thought you knew about your body, and about your life and about your mind and about your health and about your emotions, and about your mood and about your mental health. All of that is suddenly exploded, and all the rules that you thought you used to understand about how these things worked and suddenly gone. And I what I really wanted to try and do in the book was to say, this has happened, not the only one. And these are, you know, maybe some of the little things that you can do, but fundamentally just being able to say you're not the only one who's gone through this and to describe those experiences. credibly powerful because there isn't anywhere else anywhere that has done that this is a. I mean, yes, there are people with ME CFS and other post world conditions, but particularly with lung COVID, there's, you know, there just isn't that level of emotional support out there. And I guess what I'm trying to say is yes, the book is full of facts, but it's I, I really wanted it to be about emotional support. And that's why there are two chapters in there, essentially, about mental health. Because it's such a huge part of the experience. 

Hannah  35:30

I think that that was something I was going to bring up was that I, for me, the chapter on mental health was particularly helpful to read. And I think what made me feel instantly relieved, was you went straight in with mental health has not caused your long COVID. And like it, just to hear you say that because I constantly have to try and remind myself that that's not the case. And I can't I'm very afraid of stigma, that people will think like, oh, Hannah, you, you know, you're an anxious person. So you've kind of, you know, given yourself long COVID through your anxiety. It was a huge relief to hear you say that so clearly, but then have a whole chapter about it as Well. I was like, Yes, I remember like, at that time listening to it be like, Oh, I wish I I wish I'd had this chapter to listen to like, in the really early days. So I think if anyone is in a very early journey with long COVID, or has just found out that a friend of theirs, had got long COVID, I would be handed over that chapter for them to listen to straightaway.

Gez  36:35

Funnily enough, the third film I made, so probably, you know, still back in April, May 2020, was about mental health. Because early on, I sort of saw just how crushing this was, and how, how much of a massive issue it was. And I think it's, yes, obviously, your anxiety, any pre existing anxiety, depression or mental health issues do not cause long COVID. But long COVID itself, physiologically, destroys and disrupts your serotonin levels, and all sorts of parts of the rest of your physiology, your metabolism and your rest of your chemistry, which directly leads to as well as your sympathetic nervous system activated, which leads to anxiety, right, so the condition itself has a physiological impact on your mental health and anxiety levels, as Well as the secondary effect of it having basically turned your life upside down and removed, every tiny little thing that previously contributed to your quality of life has now been sort of set on fire. So you know, there's multiple different angles, that the condition impacts on mental health. And I think having a handle on that side of your own mental health is a precursor to being able to get better to some degree. Because what I would also say as someone who's previously suffered from depression, fairly severe depression before long COVID Is that that's the only other thing I've experienced in my life that comes close to being as bad as long COVID. And if you're, if you're in a really bad place like that, it's very, it almost doesn't matter how bad your physical health is, because your mental health is so overwhelmingly, you know, when you're when you're very deep underwater, I talked about this a little bit in the book, it's so almost the first thing that you have to try and do is to sort of get yourself into a slightly better place so that you're actually able to do the right things you can for your physical recovery to I do want to answer your previous question. Katya, sorry. There was a massive like eight minute tangent.

Katya  38:33

I just have to piggyback on that. Because I actually think that the book is worth reading for the party boat metaphor for depression. I think you don't even have to have long COVID For that metaphor to be useful,

Hannah  38:48

or even have depression. Sorry for it to be useful. Like, I don't have depression, but I was like, wow, yeah, I really relate to that as in what long COVID did to me it sort of really pulled away my dinghy or whatever.

Gez  39:03

Yeah, yeah. Thank you. Is it worth me briefly describing the party boat metaphor for?

Katya  39:09

Yeah, and then I will let you go back to how you met Danny

Hannah  39:14

Yeah.

Gez  39:18

So I, so this is I had, this is about 2017. I'd been I'd never had any mental health issues before until this point. And in 2017, a bunch of different points of my life suddenly got really complicated. And they say that there are a few separate pillars that hold your life up. You've got your health, your family, your profession, your relationships. And when more than one or two of these pillars suddenly come under pressure at the same time, this is when suddenly things can come crumbling down and they did for me, my mother died early in the year, I was in a relationship that wasn't working. Let me just. I'll just say that and my profession was suddenly you know, my, my professional career was falling over as well, there's a bunch of stuff that was happening. And the upshot of it was that I fell into a depression, it took me a long time to identify it. And I've always been someone who saw, sees things in metaphors. And quite quickly, I sort of had this picture for where I was. 

And I realized that everybody else who's in the world going about doing their daily business, walking down the streets, or in a nightclub, or in the office, wherever they are, let's assume that they are not also having mental health issues. And remember, they will do, of course, but this is your perception as someone who's previously not had them. And you previously think that everybody else is in that fine place, too. But they're all there. And they're all having a wonderful time going about their daily business. And that place in daily business is something I call the party boat, which is, you know, one of these sort of cruises where everybody's sort of standing on the top deck, and the music's blaring, we're all sort of drinking booze people are, you know, mucking about all the rest of it. And I'd fallen off this party boat when I'd got depression. And I suddenly saw the rest of the world from a distance. 

A sort of a concrete example of this is going to, I was in a ski resort with a couple of friends. And the town square had been taken over by a couple of DJs, who were doing like a DJ off thing. And the whole, everybody was having a wicked time, there was beer flying in the air, and the music was pumping. It was awesome. And I just looked at this, and it just felt to me, like everybody, I could see there was an alien. I couldn't compute what they were all doing, and why I was like, this makes no sense. Why are they all here? Why don't they just go home to bed, you know, so I was looking at the behavior of normal people. And it just seems incalculable to me. But yet, at any point in the rest of my life, that's where I'd have been. Anyway. So here I was, then in the metaphor, bobbing away at some distance away from the party boat, and you can hear the music and you see them all doing it. And you can sort of vaguely remember what it's like, but it's very, very separate. And then as things get worse, you sort of start to sink below the water. And as you start to sink below the water, the music becomes a bit more muffled, you can't quite see the daylight anymore. And as you sink further and further down, you can't even remember what it feels like to be on that boat, you can't see it, you can't hear it, it's just gone. And as you think further and further down, the light starts to disappear, too. And this is at the point when it gets really bad. And for me, this was a point of sort of suicidal ideation. And I think one of the other things, there are different types of depression, some people have a sense of nothingness.

 For me, I didn't get the sort of the nothingness or the sort of the catatonic kind of depression. For me, it was a huge amount of pain, like really physical pain. And this is something I hadn't considered was part of, sort of mental health before was actually a physical manifestation of pain. And it also helped me understand self harm as well, because I previously had not really understood self harm. But now I was self harming, I was punching myself in the face. And the rest of the time, I was like, I was either biting myself or trying to tell his tension type of behaviors. And the answer was, is that by creating some pain somewhere else in my body, it relieved the really deep internal pain I was feeling elsewhere. By creating that controllable pain, you take the focus away from the pain that you can't control. So that's when things are really bad. 

And, you know, eventually I managed to sort of resolve a few things in my life, the grief around loss, my mother's, I still have sort of therapists and types of help to deal with some of that. And I sort of got back up to the surface and managed to build myself sort of what I called a dinghy. And this was a dinghy where I felt like I could stay mostly dry. But I was still wasn't really on the party boats, I was still at a bit of a distance. And sometimes you can sort of roll the dinghy in the direction you want to go, you're not just adrift in life, you thinking, Oh, okay, and I've got a purpose, I can go somewhere here. But occasionally, a big wave will come and it'll knock you out of the dinghy, and you'll be back in the water again. And, you know, I was in that dinghy when long COVID hits. 

And that was kind of like a bit of a tidal wave, really, that basically just projected me out that dinghy back into the water again, and suddenly gave me a huge new set of issues to deal with. And I think one of the one of the things about sort of the metaphor for me was just this sense of how the people on the boat can't really see that you're there. You know, they don't necessarily notice that you're down there in the water. And you know, there is no shouts of man overboard from the boats. You're just out there, and you're feeling a long, long way away from the rest of the world. And, yeah, your ability to manage all sorts of waves of life is compromised, you know, the people on the boat waves will hit the boat, the boats fine. But for you, you know, when a wave hits you, suddenly, you know, you're gasping for air, water's going down your mouth and the rest of it and that's, you know, that's something I think that is very relevant to long COVID. Because when you're in this state of sort of fight or flight, it doesn't take much in the way of emotional stresses for it to really throw you overboard and make things much much worse. You know, our tolerance for those kinds of emotional stresses, let alone the physical stresses is much, much more … so we have to be careful about the kinds of places people, situations, experiences we expose ourselves to because we may not be as resilient as we were before. Yeah.

Katya  45:14

I'm, I'm so glad that… I was going to try and summarize the party by metaphor. Thank you so much for explaining that. One of the things Hannah and I discussed earlier was how refreshing it was to  hear a man talking about long covid and mental health because you know, my experience of long COVID is of it as a female condition.  A lot of the people I know who suffer from long COVID are female, the only one person who I really love who has it is Hannah, who is female. You know, in the book, you you give a whole chapter on, on gender bias. I'm not sure where I'm going with this, Hannah, can you 

Hannah  46:11

I think like, ya know, the chapter on gender bias is great, like hearing a male voice talking about the the experiences that women go through. It's really great. I loved it.

Gez  46:27

I couldn't just talk from my own experience, clearly. Yeah.

Hannah  46:32

How did you prepare for that chapter?

Gez  46:34

I had a lot of interviews, a lot of interviews, to make sure that I could do it justice, I can only be partially aware of some of the issues that women face, I had to do a lot of research because you only find this stuff out by talking to women, because these aren't always things that are often talked about, you know, a lot of the sort of the sort of, I say the micro biases, but they add up, right? It's a cumulative thing that has a massive, cumulative effect. And yeah, so the answer was ultimately lots of research and talking to lots of people who were very, very good about it. And I think it's perfect. Obviously, the reason why it's in the book is because it's of particular relevance to chronic illness. And, you know, especially when we've got, you know, this sort of this sort of history of the idea of women being hysterical, and the rest of it, it's very easy to sort of layer that on to Well, it's all in your head, or it's anxiety, all the rest of it. And that's why women get it more than men. No, no, the reason why women get it more than men is is a probability of some autoimmune components, because women have different immune systems than men. And that's a that's a bit of research that we're digging into a little bit more at the moment, actually, Danny's team at Imperial, looking into that more at the moment about how, what we can learn from hormonal cycles for women, and autoimmune patterns as Well. And what that might tell us about the condition.

Hannah  47:56

From your experience of speaking to men, do you feel like there are things about the experience of having long COVID that are more challenging for men, or things that are perhaps brought up more often in men talking about long COVID?

Gez  48:10

So if there is a challenge with the male experience of long COVID, it is a reflection of our inability to talk about shit, especially feelings. And like, so the psychological side of it, I think men are particularly poorly equipped to deal with. And this is through. A lot of us having grown up in environments where it's not okay to talk about feelings, it's not okay to say that you're hurt, it's not okay to say that you're upset, it's not okay to say bla, bla, bla, bla bla. And a lot of this leads to a lot of internalization, which is destructive. So I think women, you know, without wanting to sort of say, you know, men are from Mars, Women are from Venus, and all the rest of that sort of stuff. I think, if there is a difference, I think women are more equipped and more experienced at talking about difficult sides of experiences than men, I think sometimes, and you are perhaps more likely to lean on each other than men are men and not very good at talking to each other about feelings or giving each other emotional support. A lot of us don't know how to do it. And so I would say that's one of the, one of the sort of the greater difficulties, I think, and I get, you know, I get men contact me on social media with their stories, and what's really apparent is how, how they're desperate just to try and talk to somebody who gets the softer side of it. Because actually, even I mean, my most of my male friends are pretty empathetic, but they struggle with the softer side of it, too. And when I say the softer side of it, I mean, you know, not just the I have x symptom, but this is what it's done to my life and this is how I feel about myself. And this is all the rest of it, because all of those factors are huge in long COVID It's not just I've got a rash. It's, you know, it's

Katya  50:03

my world is falling apart. Yeah,

Gez  50:05

absolutely. Yeah. Yeah,

Hannah  50:07

yeah. Katya, did you want to take Gez back to that question?

Katya  50:12

We definitely have to ask the first question on our list. I'm just conscious of time. We all have long COVID. Gez, how are you?

Gez  50:20

I'm fine. So  ifyou guys are okay. If you're if you're not if you're, you know, just drop Hannah. I was gonna say, if you want to, if you want to pause and we can pick it up later or tomorrow. If you feel that you want to split this into two or whatever, I'm just throwing it out there. Very happy to chat more. So subject to your own health needs everything else.

Hannah  50:41

I'm okay. I think I just need to take a minute.

Katya  50:43

Should we take five?

Gez  50:45

Yeah, let's take five. Clean five.

Katya  50:51

We do this very time. I normally lie down right there.

Gez  50:55

Yeah, good. Don't. Don't look at your phone. Just five minutes breathing with your eyes shut. Alright, five minutes. Okay, cool. See you in five.

Jingle/Break

Katya  51:03

Yeah, I'm sorry. I'm eating an orange.

Gez  51:11

Right. I'm having a holes. Throat sweet. I'll take it out before I start talking. So yeah, but Mike doesn't just get rattle rattle rattle a bit in my mouth.

Katya  51:21

Like what is this strange speech impediment?

Gez  51:24

Yeah, some monster new symptom. Yeah.

Hannah  51:28

Katya, your, your face is just like been frozen in this particular position on my screen for ages. I feel really unresponsive to just say that. You're just stuck it. No, she's fine.

Katya  51:42

Am I still not moving?

Gez  51:44

She's moving on mine.

Hannah  51:45

Yeah, you're just not moving on mine. It's, it's on my end. I'm just going to refresh on the page. But that should be alright. Yeah. I'm just scared of don't

Katya  51:53

press refresh,

Hannah  51:54

because, okay. All right.

Katya  51:56

Well, just because I know Yeah. Yeah, it's okay. I'll just I'll read you Hanna. Gez, you should know that we actually had to rerecord the first episode of the podcast, because Hannah froze for me. And so we had this deeply unnatural conversation. Because Hannah froze. Yeah. And so I sat sideways like this because it was too unbearable. (laughing) Yeah, so we should we should we go back to the very beginning, then? Sure. Yes. So Gez, we love the book. How did it get written? Did you already know, Danny? Like whose idea was it?

Gez  52:35

So it was actually another long haulers idea who Kate Weinberg who is an author, but she also has been suffering from long COVID. And I met her and we were chatting about it. And she was aware of some of the work I've been doing on YouTube and the research and everything else. And she said, you know, jazz, you should write a book, you should write the long COVID Handbook. I haven't. So I have to give Kate full credit for this. Because it was her who put the idea into my head. And immediately, I was like, yes, yes, I should, because there is this problem at the moment, which is that everything that has been learned about long COVID is in, you know, 1000 10,000 different places spread all over the world and the internet. And if you have long COVID, where on earth do you go? Where on earth do you start? And a book can solve all of that. So immediately, I thought this is a great idea. So I wrote a I wrote a pitch document for it. Then went to some agents with it. And roundabout it took a little while actually. And it was in the end, the agency that took me on came through a random friend of mine in the classic car scene, who I met with Ace Cafe, which is a bit of a place in North London for the classic car scene. And I ended up I don't like when I meet friends I haven't seen in a long time. I don't like talking about long. COVID too much because I don't know, I just find like, it's kind of boring to people who don't have it. Right. Unless they're for some reason particularly interested in it.

Katya  54:14

Yeah, I can't Yeah, yeah.

Gez  54:16

So I so anyway, but I started chatting about this, and then mentioned that I had this idea for a book and my friends partner was like, Oh, Well, I You should send that to me because I work at an agency, you know, so a literary agency. So I sent that in to them. And they thought it was fantastic and took me on and then said, Okay, so we're gonna go out to publishers, but we need to probably pair you with someone medical, because it won't necessarily get picked up unless it's got that weight of a doctor or a professor or something on the front. So I had a thought and I went, who would be the best person I can possibly think of, to speak to, in particular the duality of the landscape at the moment when I say do you allottee I mean, long COVID has been sort of characterized by this patient drive early on in the condition, we named it, we researched it, we diagnosed it, we did everything. And we were well ahead of the medical establishment because the medical establishment by its very nature moves slowly. But as time goes on, we are going to rely on the medical establishment to find solutions and do the blood work and to do all the rest of you know the analysis that we need to work out what the hell's going on, and how we treat it. So who was the best person to, to represent that side of the coin, and there was one particularly outspoken voice, who was bloody brilliant, and who I'd previously spoken to on the channel. 

And that was Danny. He's a professor of immunology, who has a particular interest and expertise in post viral conditions from all over the world before COVID. And was very much on board with I say, the cause, but you know, the reality of what was going on rather than trying to diminish it, or whatever he was out there early doors, saying this is going to be a real problem. So he was that he was absolutely top of the list. I called him up and said, Would you like to do this with me? And he was like, Yes, I think I would. So I took that is I was very flattered, actually, that he would consider coming on board with me, because his reputations on the line too, right? He's got, you know, he's been an academic, and medical environment for decades. And all of that is on the line, because if he, a piece of work goes out, that doesn't hold up to scrutiny amongst the very top level of academic scrutiny that he's surrounded with, he would lose reputation. So I was Yeah, I was very, over the moon, really, that Danny chose to come on board. And I think it has, I was initially actually one of the discussions we had with publishers, when we went out to publishers to talk about it. Some of them wanted to make it a single voice, the book, and we were adamant from the start, that it couldn't and shouldn't be that no matter how abnormal that might be for this kind of book, because fundamentally, those two perspectives are so different the patients and the clinician slash academic slash researcher, that the patient that professor, let's say, you know, they are so different when it comes to long COVID. And they come at the problem from such different places. And the tension between those two positions is one of the primary experiences of anybody who's suffering from long COVID. Because it comes down to the question of why can't I go to my doctor and get a pill for this? And that tension between the two, that question just draws the tension between the two? And the answer to that? I'm the one who asks that question. There's a patient and Danny has the answer is the professor, right. So being able to come at this problem from both sides and take and give the reader listener an insight into what it's going to take to move our understanding on from those two positions, I think was really powerful.

 And, and Penguin were, you know, absolutely on board with the style that we wanted to write the book in. And we've been incredibly supportive. I couldn't have hoped for a better publisher, we actually had a bit of a bidding war for the book, which was a novel experience for me having come from a world of screenplays, where, you know, there's like one screenplay a year written by Quentin Tarantino that gets a bidding war, everybody else that you're just out there in the wasteland hoping to get one option, you know, so to actually, to actually, suddenly, in a world I never chose to be in that have long COVID. So actually have a bidding war was quite quite novel. But yeah, so So that's how it came about.

Katya  58:26

It feels almost like, like you have inadvertently done like a public safety act as a result of this book, because I feel like, I'm on Twitter a lot these days. And I see a lot of ideas. And what your book seems to do is you have all of those ideas there. Like you haven't, you know, a very long list of things that people have tried and, and then you have your voice, which to me feels like the voice of enthusiasm, sometimes the desperation of someone who is desperately ill. And then you have Danny. And I actually love the difference between your voices on the audio book, right? Because Danny is from a much more kind of, I don't know how to say like, not low energy, but his voice is.. Hannah maybe you know you're a speech therapist.

Hannah  59:14

Very measured. Yeah,. The thing is, I think I think both of you are measured. I was gonna say, even though Gez, you're talking from personal experience a lot of the time like, you are still careful with your wording in the way that you were saying you had to be with the YouTube videos, which I think is what means that the book is going to be able to like stand the test of time because you Yeah, you know, you've you've still got, you still thought very carefully about what you're saying in your sections. But yeah, it's so clearly the voice of the patient, the voice of the doctor, and I think those two voices, and then hearing them in my ear as Well. I thought that was a really interesting experience as a listener. So I'm really glad that you stood your ground and said you wanted to keep it as two separate voices. I think it worked really Well. I like you.

Katya  1:00:01

I also think you get that sense of trust. Because I'm not just hearing one person's idea. It's everything just as is before Danny. So you can't be like, in my dream, I saw an angel who told me to try sunflower oil. It's like it has. Danny has read and has read all of this.

Hannah  1:00:23

So yeah,

Gez  1:00:24

So speaking of that, the chapter that was the most difficult for Danny was the treatment chapter because fundamentally the only stuff which he can really put what they put his name to, but associate himself with stuff that comes out of high powered RCTs, because that's the gold standard for science, right. And we have none of that, in long COVID. What we have is a bunch of anecdotal stories about people trying all sorts of mad shit, you know, and after recess, for example, is something that I chose to not even talk about in the book for a few weeks. Sorry. So apheresis, is, it's a form of blood filtering. That's been done out in Germany, it's a clinic. It's called apheresis, it's a 37/38 year old treatment. And that's how long it's been around for. And it's designed to basically help people who have critically high cholesterol levels, and it takes your blood volume out all of your blood volume out like four times and something comes out one arm goes back in the other goes to the machine, filters out all the fibrin, which is sort of clotting agents and a bunch of other stuff and a cholesterol and puts it back in again. Now, people were feeling some people were doing very Well with long COVID after this treatment. And you know, and it seemed to fit into this narrative of what maybe micro clots are a large part of this puzzle. And if this machine is filtering out the micro clots and putting the blood back in again, then great.

 However, the treatment is quite controversial, because A it's expensive, you'll go through several rounds of his treatments, costing 500 /1000 euros. It's It's invasive, you know, you're getting very big needles put into your arms. The risks aren't necessarily high, but it's expensive. And it's invasive. And we didn't have any evidence for it beyond the anecdotal. And so as soon as there's something which is expensive, invasive, and comes with a perceived level of risk, but only has anecdotal stuff, even by just writing its name in the book, I'm giving it Yeah, ways. And that's a big problem for Danny, too, because his name is still on the front of the book that's talking about this stuff. So we have to be quite careful about the kinds of things that we talked about. And also, you know, even in terms of, you know, unless you're in academic circles, you may not perceive the difference in kudos  isn't quite the right word. But the difference between the very top academic journals, and the ones that sort of skirt around the bottom in terms of the standards of evidence that they demand from the studies that they publish, and the way they are perceived by the rest of the community. So when you've got something that's published in Nature, that stands for a lot more than in the Journal of Bob, and Sally, you know, somewhere, so and so when we've got a lot of our evidence, and people are maybe jumping on a study on Twitter going, Wow, look at this. It's been published, but it might be in a journal that doesn't really what's the peer review? Like? Has it really been looked at properly? Is it full of holes and the rest of it, and again, we've got to be careful about talking about stuff like that. 

And even the microclimate stuff, because the microclotting stuff is still by no means widely accepted in the community, in the medical community in the academic community, because it hasn't been published, it hasn't been replicated by multiple studies and published in top journals. So it's still out there is a theory, very much a theory as opposed to an accepted sorts of facts or, you know, pathology. So this is sort of the very slow nature by which this stuff moves on. And it's frustrating as hell as a patient. And that's another reason why, you know, we need to have two voices, one saying, I get how frustrating this isn't Danny, who says, This is why it moves at the glacial pace that it does, and this is how I think it might be possibly able to be speed sped up. But if you speed it up, then do you compromise the science? And that's the thing, right? So it's hard.

Katya  1:04:08

Yeah, I feel like I'm something that I actually ended up with, towards the end of the book is a renewed sense of faith, that that stuff is being done that I think, I didn't know this before reading the book, but it's like over a billion dollars has already been invested in long COVID research. And by the end of this book, I felt quite reassured, I felt comforted.

Gez  1:04:34

So So it's interesting. There's been a few different takes about where we leave readers/ listeners with the book by the end of it, because we can't say we're going to have the cure by next February, you know, and there'll be a magic pill that sorts it all out, because we don't have a magic pill for MECFS yet, you know, we don't have a magic pill for post Ebola. And when you look at people who had SARS one yeah, they're not doing great. If so, you can look at all of that stuff and go. But you can also say, Well, yes, but the research into long cave is happening at an unprecedented rate with an unprecedented number of pens, machines, microscopes and eyeballs all over it. And so there is very good grounds for thinking we're going to make progress and level that's not been seen before. If you asked me where I personally think we'll be in, let's say, two or three years, I think we'll have two or three treatments that help. And when I say help, I don't just mean symptomatic relief, which is what everything is, at the moment, rarely, plus or minus, I mean, actually help calm down the causes of the symptoms. I don't know that we're going to get a magic bullet in the next five years, and we may never get the magic bullet. But are we likely to get treatments that dramatically improve quality of life? For those of us who are suffering? I think so. Yes. But do I also think there's stuff that we can do in our own lives right now that help us make equal or greater gains without any pharmacological intervention? Absolutely. Yes. as Well.

Katya  1:06:08

That was the question we had. Just where we are at right now then, what do you do dad to manage your long COVID?

Gez  1:06:16

A big sigh there? Yeah, there's a bunch of stuff I take that helps me manage some of the symptoms. So I'm on antihistamines, h1 h2 blockers. I'm quite MCASS-y, I react to food quite a lot. I come out in rashes. Hard for me to identify how much of my headaches and other stuff is MCAS versus anything else. But some so antihistamines, I'm on a very low dose of an antidepressant, I'm on a very low dose of another one  to help me sleep. And I'm on a fairly hefty dose of melatonin about 10 milligrams to help me sleep. Again, disrupted sleep super, super, super common in long COVID. And super, super, super important. But okay, so there's two primary things, I think that are predictors of whether you're going to have a bad day, or a good day, the day after today, right? The first of them is how much you've done today. Is today a rest day or is today full on? And that's obviously inversely proportional, inversely related to whether tomorrow is good if you rested day, tomorrow is likely to be better than average, if you've rested more than average today. And vice versa, if you've done too much. And the second is, can you get a good night's sleep, particularly with going to bed early and getting some good deep sleep? Those nights are often highly correlated with having a decent day afterwards. And again, unrefreshing sleep is one of the in fact diagnosis factors for MECFS. And it's the same in long COVID. Why? Well, again, nervous system is probably highly implicated here, as Well as things like serotonin levels, and HPA axis, which is what our cortisol levels are doing. And by nervous system, I just mean that we're not shutting down into parasympathetic, and our body isn't able to sleep well, because we're still in this agitated state on a nervous system level. So anything that you can do to calm the nervous system down in the evening. 

Gez  1:08:15

So this means not working, if you possibly can you knock off the work as early as possible, eat as early as possible as well, like, try and get your dinner times early. Because one of the things that eating does, I'm on all sorts of tangents here. But I will come back on top on talking about promise. Fasting is a massive thing where people are all over Yes, fasting makes me feel better. And is it all because of autophagy? No, probably not. Autophagy takes four days of not eating. And autophagy is the process by which the cells break themselves down and clear themselves out, which happens when you fast. The reason why people feeling better when they fast is because eating triggers the sympathetic nervous system initially, which raises the heart rates, you have to digest all the food. And if you're already on the sort of the redline of that, then eating will often make you feel worse in the following hour or two, or in the hours after that it will elevate your fight or flight responses. So by not eating, the reason why these fasters are feeling better is because their nervous system is just remaining at a  calmer level. That's my theory about that whole school of thought.

Katya  1:09:15

That's so interesting. I'm sorry to interrupt you, but I don't at the moment, because I've recently massively gotten into chocolate, butthere was a period when I was super enthusiastic about getting over my long COVID where I ate in a 10 hour window and then I would not eat for you know for the rest of the day and have more energy I know I did. So it's interesting to hear you....

Gez  1:09:43

Careful with that chocolate as much as I love chocolate too careful because that sugar will also just set things off. If you've got a heartrate monitor on your watch. Just see what your heart rates doing at rest in the half hour before you have a meal. And let's say an hour after you've had that meal and an equal level of rest again I guarantee you your heart rate is going to be 10 BPM higher. And so that's one of the reasons. So that's also why you want to eat early, so the body can calm down for sleep, because your deep sleep happens early in the night, and we're not getting enough deep sleep in long COVID. So you want to give yourself the opportunity to get  as much deep sleep as possible. So that's one of the things I do, try and eat early, go to bed early and try and just calm everything down before bed. 

Gez  1:10:23

The other thing I have been doing recently, which I find incredibly helpful are Suzy Bolts classes, now, you could loosely call them Yoga. But yoga, not in the sense that you think of in terms of being physically demanding mostly breathwork, meditation, some very gentle reclining movements. Fundamentally, this is an opportunity to dedicate time in your day to calming down the nervous system. And this, I think, is absolutely, this is a huge part of pacing, full stop. But I also think it's a precursor to recovery. Because until we can calm down the nervous system, we, you know, the body is caught in that vicious cycle, that loop that is self sustaining. Of inflammation of you know, T cell activation of all the mad shit that's going on platelet hyper activation, all of this stuff, it's all part of the same system that we have to somehow interrupt. 

Gez  1:11:16

So how do we do that? Well, the first place to start is calming down the nervous system. And for me, this has had a secondary effect or benefits or purpose, and that is emotional purging. So I have found myself crying a lot during the sessions. And sometimes I don't take part in the session much. And then my camera's off. And I'll just cry for 10/20 minutes. And this stuff is guttural, it's coming out from the body. And it's just ancient trauma, some of it from when I was four years old, some of it from when I was 35 years old. But again, all of this stuff, which in my opinion, we carry with us, and it contributes to the functioning of our nervous system. And even just on a simple N equals one, I feel a hell of a lot calmer after that, and if one of those big emotional stress or waves hits me, after I've just done all of that, I'm way better at dealing with it, I can take it well in my stride before as opposed to getting overwhelmed.

Katya  1:12:14

I completely agree with you reading the book, you actually inspired me because I, I've always done meditation and breathing exercises, but I just did them once a day. Reading the book, I was like, I should be doing this every couple of hours. And I started doing that. And it it gives me back time time when I would have been foggy and fatigued, I got an extra 40 minutes from an hour. If I do 10 minutes of non sleep deep rest.

Gez  1:12:42

Yeah. Again, this is part of pacing. Pacing isn't just sort of doing... Well. It's all sorts of parts of pacing, doing less doing differently in the rest of it. And when you do the rest, you can actually it's just stopping and lying there is great, just do that. But if you can actually build in like you say non sleep deep, deep rest, where you're actively actually trying to calm things down by controlling the breath, or even just following a 10 minute guided thing or just using a little pattern of breath to keep you know, breathing app has got a really nice little inhale, exhale, time thing, whatever it is, that makes a significant difference. And as you say, gives you the clarity back, I find it's almost like after 45 minutes or 50 minutes on a zoom call, for example, I can feel my cognitive ability to process verbal information, just that just gets cloudy and foggy. And I can't work out what to say. And I can't tell what people are saying to me. I can go off and have 10, 15, 20 minutes. And then Oh look. But fog has cleared again. And I think we ought to be doing that all the way through all our days, subjects who are level and where we're at. Because as you say it gives you time back because you're not spending three quarters of your day foggy if you actually break it up and do 10 minutes every hour, then suddenly, actually three quarters of your day is not foggy. Really important.

Hannah  1:14:01

Katya and I talked a little bit about, about this in I think our first episode and we kind of found it quite nice activity where we talked about what had changed for the better in our lives since getting long. COVID. And if we felt that anything positive, come out of it for us. So we wanted to put that question to you.

Gez  1:14:22

So yeah, I think so. I think there were patterns in my life that weren't healthy, that I perpetuated and got away with because I could and I am now faced... Well I have now been faced with those behaviors and patterns and realized that they don't serve me and anymore and I can't get away with doing them. And this is you know it's about actually the importance of taking stock of where you are at any one given but little things right it's all this sort of meditative yogi New Age stuff, but actually there is something to it sometimes. And that is like, if you just live your life at 100 miles an hour, and you don't ever stop, and you're in this perpetual state of go go go, how much are you ever really appreciating the things you have right now. And I think one of the things that long COVID has given me is an ability to really appreciate the little things that previously were just part of my, like, you know, rocket paced, whirly gig type behavior. Whereas now I really appreciate the fact that, at this stage of my recovery, I am now able to have a coffee and a half in the morning. And I couldn't do that for a year and a half, two years, because I reacted so strongly to it. But now I can, and I can really enjoy that coffee. And it's a really important part of my day that I'm, I'm already looking forward to it now. And it's like, I'm looking forward to it. 

Katya  1:15:52

What was it you said about sleep? 

Gez  1:15:53

Yeah, yeah. Yeah,

Katya  1:15:55

I know, I'm kidding.

Gez  1:15:56

But it's, yeah, so it's those sorts of little things that I really appreciate the little things that I can do, which previously I took for granted. And now I'm hugely appreciative of that little stuff. And from having spoken to a lot of long haulers, this is I think this is quite common that we do sort of learn to re-appreciate the little things. Because A, sometimes we can't do the big things. So you have to appreciate something. But also, you realize that some of these little things really have meaning. 

Gez  1:16:28

So I mean, I last year, I made a film that was a bit controversial in the community where I went on this inverted commas ski trip, what I would say it was a an active convalescence in a healthy environment. And I've just recently got back from having gone out again for another few weeks. But I can talk at length about why I think this is helpful and how you can maybe do your own version of it. But the moment I got back on skis after a year of basically having been able to do no exercise at all, of any kind. And I just found myself just whooshing down the slope, and just rocking the edges to one side and carving round. And I was just like, I was so happy for that simple pleasure of nature and activity and environment and feeling like I could actually use my body in a simple way that was inverted commas active. And that's probably one of the most enjoyable 30 seconds of skiing I've ever had in my life. And I've been skiing since I was four. And it was doing nothing, it was on a blue slope into a lift, and it didn't matter. I was I was free and I was alive. And I was all of these things. And I was appreciating that in such an intense way, by virtue of its of how of appreciating how special it was and how lucky and privileged I was to be able to do that. 

Gez  1:17:49

And I think a lot of that sort of luck and privilege I had maybe taken for granted about the things I the way I live my life before. And now I hope I don't. I mean, in the grand scheme of things. I mean, if you do a pros and cons list, I mean, I think you know, long COVID does add more to one than the other. But I think we all should be able to try and identify some in the pro column. And I think it's essential that we do because I think one of the things to go back to what we were talking about at the start that first year have long COVID, which is full of denial, anger, bargaining. Once you get past that, I think you get to the place where you can recover from, which is to understand that the future won't be the same as the past. And we can't try trying to go back to who we were before, this isn't going to work for the majority of us. But for some of us, you get better after three months, you know, who have relatively speaking short, Long COVID, they probably can get back. But once you've been a year or more, I think we're going to be a different person on the other side of this than they were before. And our lives will be different, even if we're just as capable. And we're 100% and the rest of it.

Gez  1:19:00

 I think we will have a level of insight into ourselves and the world around us and the people around us and what's important that we never had before. And if maybe we're not quite at 100, maybe we are a new version of ourselves. Where are there are some things that we used to do we can't do now. Am I ever likely to run a sub three marathon again, I ever like to run any kind of Marathon again? Am I ever likely to go have 10, you know, 10 pints and a night on the piss? No, I think these things are gone now forever. And that's okay. My life can be about other things. I don't need to go back to that person. You know, the person I'm going to be in the future is going to be somebody different and that's okay, that person can be happy too. And it's an opportunity to do new things and to live in a new way that is invigorating and meaningful in all sorts of ways that I haven't fully worked out yet. And I think that is going to be the case for a lot of us I think and and to get ourselves into a mindset where we're looking forward to that future, rather than kind of rather than being stuck in I'm going to be ill forever look forward to that new future that's different. And I think once we can get ourselves into that mindset, again, that's a really positive place to be in terms of nervous system impact, let alone anything else.

Katya  1:20:14

I actually loved I loved that you mentioned the skiing holiday, I think we should be very clear if anyone's listening Gez's skiing holiday was not what you would think it was like you like... things I really resonate with not speaking on the ski lifts because you need to save energy, 30 seconds and then stopping it, it was not a ski holiday, you, you, you took your long COVID body into a ski holiday environment, and paced in that environment. But I listened to that. And I thought, I used to love swimming. And maybe like, once I'm part time, I'm going to take mum to a spa. And I'll be somewhere I can rest all day, and then go up and down a pool for a bit. And I just know from experience of holidays, that that will that will be helpful. And I know that because of my long COVID. Like that will be one of the happiest moments of my life so far getting into that pool. You know, I ,yeah, I just wanted to say like, I completely agree. And thank you for sharing that because you did take a risk, say something like that to a community that is very anxious about any suggestion that it's in your mind. So you obviously don't go anywhere near that. But, yeah you took a risk saying that.

Gez  1:21:30

yeah. So here's the again, an N equals one observation from the last three weeks that I've spent in the apps. So in terms of... I've looked at it as autonomic conditioning. So David Petrino does this a lot with his patients at Mount Sinai. And it's about trying to, and this is also what Suzy Bolt does to actually, it's about trying to do a pattern of movements, that is somewhat stimulating to the body, but not so much that it is done to a level where it's is autonomically challenging. So that you raise the heart rate a little bit and then calm the F down, right, and then you do it again, you raise the heart rate a little bit, and then you calm the hell down. And then you keep doing that without ever going over the point where it gets stuck in that oh my god, it's gone mental phase. 

Gez  1:22:15

So for example, if I was on my feet for 15, 20 minutes, just around the house, I don't know doing whatever around the house or not doing anything in particular, but just on my feet doing something before, I would notice before I went away, it wouldn't be long for my heart rate started to just it just suddenly went, Oh, my God would go crazy. Like you know, 110 120 130 and would just keep going mad like that. And when I got out to the Alps, like even by the time I put my boots on and walked like 100 meters to the car, oh, my God, my heart rates doing 130 again. But by being really, really careful about incrementally building. And then also after I've done my day's activity, I'm also spending eight hours resting solid, like not like literally my total step counting that day was like 1200 from what I would normally do at home of 5000. So I'm massively reducing all of that no emails, no work, none of that nonsense, your rest. But when I'm doing the activity, I'm being really careful to break it all up. And then slowly building it up day on day on day without hopefully ever triggering that PEM limit or in any incremental bit of activity, doing something that's so intense that the dysautonomia suddenly takes over and fight or flight goes mad and the heart rate goes mad. 

Gez  1:23:28

Long story short, by the end of that three weeks, I was doing half days, so like three hours on the mountain of and I was even able to talk to people on the left. Still doing the rest afterwards for the rest of it. But my heart rate was so much more under control and behaving normally. And it has been since I've got back I had two or three hours, busy this morning on my feet of doing stuff. And I sat down and went, huh, I haven't actually needed to sit down and I'm now sitting down out of choice. So I have definitely had a level of autonomic improvements that I have managed through this degree of reconditioning. Now, this is a reconditioning exercise that .... because I know how to ski and because I can control that environment, I'm being very careful and I'm by myself. So I'm only looking after myself. I don't have anybody else's emotional, physical, whatever needs to look after. I can be very selfish in that environment. You've got ... if you want to try and do something similar, you have to it helps if you can be in an equally selfish position where all you're doing is managing your own needs and understanding your own limits and only staying inside those whilst you gently just push the limits and back off. Something like running is hard to do this with because it just immediately raises the heart rate so much. Swimming though. I would be so happy if you could do whatever swimming you could that gave you access to that place. Again, this helps the longer you've been ill the greater sense you've got for where your limits are and where those PEM limits are and being able to Identify those early signals that tell you that you're overdoing it, whether it's a bit of pressure in the head, whether it's a bit of dizziness or anything else, that show that you're getting a bit dysautonomic. This is all so individual that I can't say , everybody has to go skiing, that would be insane. You know, but if there is something

Katya  1:25:15

Yeah the takeaway from this podcast - and actually I'll begin with it - do you have long covid? go skiing?

Gez  1:25:26

What hat I would also say as part of this environment is a huge part two in terms of again, helping you calm the nervous system down, and do you have a happy place in the world that you can get to, because that will also be really powerful, especially if it doesn't have environmental pollutants and all the rest of it. Is there a happy place for you that you can get to where you can do something that makes you feel happy and connects you with your body that you can do in a way that's really gentle and incremental, when you can back off and stop when you want. That's the sorts of things that we can do, which I do think can make a big difference in recovery. And the people I know, who have recovered after two plus years have all done something similar, or their own versions of this, whatever it may be. 

Gez  1:26:09

And there is no blanket answer for what this looks like for everybody, because it's so different. But I don't know anybody who's recovered who hasn't done major parts of this, whether it's calming the nervous system down with gentle reconditioning, the happy place, cutting out stress, whether that's work family relationships, or taking time out from any of those that are hard, however long it needs to be, you know, I've got a mate who literally, he had, he had a family and young kids. And he just went away into into his parents place in Wales and spent like, three months there by himself, just living in a hut in Wales. And he was sorted. And he went back to running ultra marathons - whether he  should have done is another question. But, but, but the point is, is that that variations of that story seems to be pretty common among the people who have sorted themselves out.

Gez  1:26:57

 So until we've get the magic pill, yeah, we should try and do whatever we can in that direction. And the other hard thing, too, is what priority you put on this stuff, right? Because my priority, actually, recovery was my priority, like number three, or number four, I was writing a book, I was making YouTube films I was doing all this other stuff. And I never really prioritized recovery, which is why I've just taken the best part of two months out, and like deleted Twitter, Instagram, all the rest of that stuff off my phone, my computer not been on it. Just trying to change the mental map of the way that my brain works as well as everything else. Is this two months enough? Probably not. I'm probably going to need to do another thing. But again, it's like if I do I want to spend the next five years bouncing off my PEM limit and not being well enough to live a full life or do I want to invest time now to try and move the needle far enough that I can just interrupt those vicious cycles? You know? And yes, it's, ithere's a degree of privilege in being able to carve out that time for myself, I don't have family, I don't have kids, I can afford to take some months out, you know, I can cover myself financially for that. But not everybody can. That's again, this is why it's so hard, right? So hard.

Hannah  1:28:15

Oh, that's so so interesting. It's like a lot of food for thought maybe we start thinking about what I could maybe be trying to do. Because yeah, I think my, my, my eye's off the ball as well. Like I've, I'm so invested in my job. And I kind of do, basically my I kind of live and breathe and rest in order that I can do my job. So I think I give everything to my work. And I don't really I don't I definitely don't give myself enough space to actually think, could I actually recover from this? Interesting, interesting to think about.

Gez  1:28:52

It took me I mean, you know, a year of knowing I should do this before I actually got round to doing it. Yeah. And, and it kind of got to the point where actually the plateau just extended and extended, extended and unlike I've been on this plateau for a long time. And people always say you're doing better. And I'm like, am I because can I act, when you look at the objective things that I can or can't do, they're still the same, or were the same. And that's the baseline I've been trying to shift, I would say if it's food for thought in there, digest it and take as long to digest it as you need to work out what your version will look like. And for you to get to the emotional place where you can say to yourself, it's okay for me to do this. And this job and everything else that I've put so much of myself into for so long. It's okay. And this is more important for now. And I can come back and I can then do that job better afterwards. And that's a big choice to get to right. Because for those of us who invest our lives and our souls and our brains into our passion, which is our work. It's hard to separate ourselves from that because with that comes meaning and without that meaning. Where are we? Yeah, there's a lot of digestion, emotional digestion in there before you get to that point where you can do it.

Hannah  

definitely.

Katya  

Oh my god. I felt like I felt like I walked into a podcast and now I'm thinking like, I need to make some massive, massive changes to my life.

Gez  

There's a book I recommend you guys to read. It's by Jeffrey Rediger. And it's called Cured.

Katya  

You're supposed to plug you're own book Gez

Gez  

Yeah, this is pretty good. This is what pushed me over into identifying the changes I needed to make in my life. Read it.

Hannah  

We'll check it out. Yeah, thank you so much Gezfor coming. Honestly, we've really appreciate it. It's been such a privilege speaking to you, and kind of getting that inside view of what it was like to make the book to write the book, and then hearing about your experiences of managing your long COVID. And what you're doing now to recover, which I think is, I'm very interested to hear kind of how you fare. Now, having kind of said, you're feeling better after that trip, like, I want to check in and find out.

Gez  

Let's catch up. Let's pick up again in X amount of time, and let's reconvene, and we can talk about what's moved, what's changed and how everything else is happening and all of that. 

Katya  

Yeah, that'd be amazing. I yeah, I can't thank you enough. But like, not just for writing the book, but also for giving us so much of your time. Like we said, 45 minutes, and it's been

Gez  

it's been a pleasure. Honestly, it's been a pleasure. Yeah,

Katya  

I get that. It must be super rewarding for you as Well. But just thank you so much.

Gez

Yeah. Pleasure. Yeah. Okay. Well speak to you guys soon.

Jingle  

I'm having a good day. 

Katya  

Okay, thanks so much for listening. I really hope you got as much out of that as we did. If you haven't yet read the long COVID Handbook. We link to that on our website, bounded energy.co.uk just mentioned a book towards the end, called Cured by Dr. Jeff Rediger, an American doctor who set off on a mission to investigate occurrences of spontaneous recovery from seemingly incurable conditions to see what he could learn. In the book, he shares his findings. And I went and listened to that book straight away after this conversation with Gez. And yeah, I completely agree with Gez. It's an excellent and really useful book. This episode is already super long for the long COVID ear. So I'm not going to give it a review. But I just like to thank Gez again for recommending that and pass it on to you guys. I've linked to that on our website as well. I hope you join us next time for the final episode of this season. Before Hannah and I take a well earned break. In the next episode we'll be sitting down with neuropathologist Dr. Mayen Briggs, and finally getting answers to some of the questions we've been collecting this season. Why do I hate loud noises? Why am I getting my words wrong? What is brain fog and more? If you enjoyed

Hannah:

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to bounded energy@gmail.com Or find us on social media at bounded energy. 

Katya  

And yes, that is me singing the jingle. A huge thanks to Harry Gould, the talented musician who lowered himself to produce it and nanny Atkinson, the illustrator who made a rather joyous logo