Five years into long COVID, are we any closer to understanding what causes it — or finding a treatment that actually works?
In this episode of Bounded Energy, Katya and Hannah welcome back Gez Medinger, filmmaker, long COVID advocate and co-author of The Long Covid Handbook, for a long-overdue catch-up.
Two years after their first conversation, Gez shares how his health has changed, what he's been experimenting with recently, and whether he's feeling any more optimistic about his recovery.
Together, they discuss the latest developments in long COVID research, the frustratingly slow progress towards effective treatments, and why stories of miraculous recoveries deserve a healthy dose of scepticism.
They also tackle some of the bigger questions: Has public awareness of long COVID improved? How do you stay hopeful when you've been ill for five years? And what can you actually do when you're tired of waiting for medical science to catch up?
An honest, funny and occasionally sweary conversation about long COVID, recovery, scientific uncertainty and finding ways to keep living your life.
A note for listeners: This episode discusses experimental approaches to long COVID, including prolonged fasting and the Lightning Process. These are personal experiences and opinions, not established treatments or medical recommendations. Prolonged fasting carries significant health risks and should not be attempted without appropriate medical guidance.
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Transcript
Katya: 00:01
I'm having a good day. Minute hour week. What to do and how to be with the bees. Given to me, me and my bounded energy. Hello listeners, Katia here. Welcome back to another episode of the Bounded Energy Podcast. In this episode, we catch up with Jez Medinger, filmmaker and co-author of the Long Covid Handbook. Hannah and I first spoke to Jez two years ago in February 2023. And you can find that conversation wherever you get this podcast. It's just called A Conversation with Jez Medinger. Since it had been two years, it felt like time for a catch-up. If you're not familiar with Jez, I really recommend listening to that episode first because he speaks in detail about his journey with long COVID, all the things he tried to cure himself, what worked, what didn't, long COVID and mental health, and just so much more. It's actually our most popular episode. I think we're at about 500 listens for that one, which is mad. But anyway, in this episode, we discussed how Jez's long COVID is now. We asked him if there's anything new he's been trying. We talk about attitudes to long COVID in the general public, how to stay positive now that we're five years on from COVID and there is still no cure. And what Jez is working on next. If you want more of Jez after this, he has a YouTube channel just called Jez Meddinger. And then finally, I just want to flag there is some occasional light swearing. I think there are three swear words in this whole episode, um, which I've kept in. I haven't bleeded them because it's authentic. And I personally have no problem with swear words. Okay, no further ado. I hope you enjoyed the episode. It's so good to see you. I realize it's been two two years since we spoke, which kind of makes sense, long COVID. Like with the pace of long COVID.
Gez: 01:58
Long COVID, five years, it's now been 20% of my adult life. 25% of my life? I fucking don't know. But like it's a lot, right? And and like it's just been this eternal, I don't know, like you've just gone into a black hole, right? Where time has lost its meaning.
Katya: 02:15
Yeah. Well, and also Hannah and I were just saying before you joined, because we Hannah and I joined the call early to make sure that our headphones worked and stuff, so you wouldn't waste your time. And I was literally just saying, how messed up it is to sit on a call with like one of your oldest friends and not speak because you're trying to save energy for the thing you you planned on doing. It's like it's so weird, but like it's it's normal for us now because it's been three or four years of this for us.
Gez: 02:47
Savage.
Katya: 02:48
Yeah. Um okay, should we just dive in then? So we we already prepared our questions because another thing with long COVID is you have to prep when you have the energy, you have to do the stuff so that if you get tired, you can fall back on that.
Gez: 03:01
Yeah, yeah, yeah, yeah.
Katya: 03:03
Um Okay, yeah, I've been watching a bunch of your YouTube videos, Des, and I can see that you're skinny. You're a prepper.
Gez: 03:11
Oh, I'm a skinny.
Katya: 03:12
No, like it's really thought out before they happen.
Gez: 03:15
Well, you know what? Yes, that's true. But I mean, I crank out those questions in like five minutes. I might just sit there and go, okay, shit, I've got to sort these questions out. And at some point, hopefully the day before, I'll just crank out a few questions, I'll send them over to the interview, so at least they know what's coming. Um because some of them aren't very confident on camera and stuff. But actually, to be honest, probably half of what I asked them is off the hoof. Like just but just comes out of what they've just said. Okay. So yeah.
Katya: 03:40
Okay. We might not be up up for that, but it's fine. So here's something you've prepared earlier. And the first question is how how is your long COVID now? And then how has it changed since the beginning of your illness?
Gez: 03:55
I mean, look, this is a really hard question to answer, right? Because it's like, tell me about this cloud that you see in the sky. That's kind of the the challenge you've just set me. The answer is um it's good. Right now, it's relatively good. So something I'm about to talk about on my channel is my most recent experiment into interventions. I don't call it treatment, I call it interventions because I kind of feel that um we don't really have any treatment really. All you can do is to just try and change change the things that your body is reacting to, um, whatever those things might be, in the hope that somehow you can shake it out of the vicious cycle it's got stuck in, which it seems that it is. And there's one I'm not gonna God, there's so many little bl there's so much context I can give here. But let me just give you a touch more context. So there was a study that came out a few months ago that looked at did some biopsies of people's guts, and it found that uh approximately 21% of people who were infected and recovered. So this is just like everybody else you know who has had COVID and is now fine, 21% of those people had a unusual amount of viral proteins in their gut tissue. This was highly suggestive of uh viral persistence, the authors of the papers thought. And when they looked at people who had long COVID, that percentage jumped up to 43%. So there seems to be a correlation here. And there's all sorts of things that we can draw out of this. So having this stuff in your body doesn't mean that you're automatically going to have long COVID in the same way that having Ebola, like I don't know what the number is, but it's probably pretty close to 100%. If you've got Ebola in your body, you're probably gonna have Ebola symptoms, right? Um, not the case with having these viral proteins. So it's not not a necessary prerequisite, but it does seem to be correlated with people suffering. Right? So um, does that mean that all long COVID people have this stuff going on? The viral persistence slash debris, whatever this might be, not necessarily, but there does seem to be a correlation that means that it's connected. So, what can we do? The paper talks about either um uh going after this with antivirals, basically. Fantastic idea, great, let's knock out the cause of this problem. How long is that going to take to trial and get this to the market? You know, five years minimum. So, what can we do in the meantime? How do we sort this out? My logic was how do I make my body, that's one of these 43% group at the moment, how do I make it behave like everybody else is in that 21%? I can't get rid of the stuff that's in there necessarily, but can I basically break the cycle that has put my body into this overreactive state to whatever this trigger is that's inside it? So how do I basically turn off this device and turn it back on again, fundamentally? So, my most recent intervention on that fast, the closest thing that I think we have as humans, without actually like killing ourselves and then like defibrillating ourselves, is fasting and extended fasting. So I've just come back, finally getting round to answering your question. Just got back, well, three weeks ago from my second extended fast. I did one 15-day fast in October, just come back from doing 19 days. And so far, I have taken all sorts of liberties with how busy my days have been. I crashed once after two weeks of ludicrously busy days, and I've recovered from that crash after about three days, and I'm now back to a pretty decent level this week. I'm still finding a baseline, I'm still finding out what's going on, but fundamentally I feel less wrecked more of the time. Now, I don't think I'm able to go back to exercise yet because I had that crash, and that tells me that I still have to be careful. And I would really like to be able to prove my theory that this works by going and smashing out a sub 20-minute 5k. I'm not quite there yet. But at the moment it's really promising, and I am cautiously optimistic that this might be a corner turned. But I have thought I have turned so many corners before, I am not getting too carried away with myself just yet.
Katya: 08:00
Han and I are smiling at that.
Hannah: 08:02
Yeah, we've had that experience. We've had the turned corners thing and then oh yeah.
Gez: 08:07
Oh, I'm just exactly back where I was. I got in the circle.
Katya: 08:10
Yeah. The fasting thing surprised me because I have I've heard of people benefiting from fasting. I can't remember if it was mentioned in cured, but I feel like it has been anecdotally known to help people with serious illness, but I've always ignored it. And I I think I saw it as like a wellness culture. I I've never tried it. I've always been, I don't know.
Gez: 08:37
I had the same intrinsic kind of puff. It's a sort of fatty kind of culty wellness, there's no science type reaction to it. And it's the sort of thing that people get caught up in this whole sort of, I don't know. I I I was equally, it didn't really stick with me as an idea until I spoke to someone who uh was a good friend of mine who'd had long COVID, um, had been as sick or sicker than me back a few years ago and is now completely 100% recovered. And he attributes it entirely to four extended fasts that he did. And we had quite a similar form of long COVID, we had quite a similar presentation before. And he said that after each extended fast, he sort of went up 25% and things he couldn't do before, he could now do. And then he kept building and building. But it took him a year to do four extended fasts over a year. And there's a lot, and I can go into the science and the rationale and the logic, or rather, logic rationale and what science we do have, that's the right order to put it, for why this makes sense and why this could work. Um, but that was the final kick I needed, which was hey, you know what? He's he's 100% better now. What odds do I need of this working for me to give it a go? You know, I've tried everything else and I've tried far more dangerous, dodgy things than this. So why not?
Katya: 09:49
Can I ask um I have two questions now? Because we had a question from a listener that I never actually asked you. But my first question is, could you just tell us the nature of this extended fast? Yeah, what didn't you eat?
Gez: 10:01
Um so um good question. So you taper down over like three days beforehand, bringing down your calories, bringing down your caffeine and the rest of it. Um, and then you start the fast. And um you have about 150 calories a day. So normally women would have 2,000, men two and a half thousand. So you're down to a fraction. And that fraction consists of normally a small glass of juice in the morning and then some very thin kind of vegetable flavoured hot water, i.e. broth, at lunch and dinner. Um, and this gives you some of the nutrients you need to stop the body crashing. So this is a type of fasting called Bukinger fasting. It's been around 100 and something years, um, pioneered in Germany and mostly available in Germany and Europe. Um, and it's often described as fasting on easy mode, because the other way of fasting would be to do a water fast, which is what the Russians have historically done, and that's brutal. Your body will crash really hard. Um, and you don't necessarily gain any more physiological benefit from doing that. You might as well just support your body a little bit, but trigger all of the physiological processes you're trying to trigger that help you with the fasting, but without caning yourself in the process. So, and I also have had issues with my blood sugar before. I'm quite sensitive to low blood sugar, and I was a bit worried about all of this. And fasting is hard, but fasting with long COVID is harder. So I wanted to have some clinical supervision as well. So that's why I went out to a clinic in Germany to do this that specialized in it.
Hannah: 11:24
Yeah, that's what would worry me. That like is the blood sugar thing, because I know when my blood sugar crashes um after a spike or because I haven't eaten, um, then I can really feel the like the hangover setting in. Um yeah.
Gez: 11:42
It's so that's why the first three days of a fast are absolutely brutal because your body is scrambling into like emergency state to deal with stuff. After that first three days, it settles down into a new sort of equilibrium where it can deal with it. Because your body has shifted into ketosis, it's no longer trying to generate energy from sugar, it's just burning your fat to do it and a little bit of muscle here and there. But as humans, we are designed to fast. Like we are we wouldn't have survived as a species unless we were able to go without food for long periods, right? So um, so it's not something that is physiologically dangerous as long as you make sure that you look after some of the basic metrics and you make sure you have some supervision. So if something weird does happen, then you're okay. The thing, once you're a few days into the fast, it's actually blood, it's heart rate and blood pressure you're keeping an eye on more than the blood sugar. The blood sugar stabilizes because your body sorts itself out, but it's the blood pressure and the heart rate that you have to make sure that the body hasn't gone into an emergency state, in which case you'd have to break the fast and come out. Yeah.
Hannah: 12:43
Wow, really interesting. Yeah, I'll um I'll go and uh Google all of that and have a little read. Um and yeah, and I'll watch your videos and they come out.
Gez: 12:52
Yeah.
Hannah: 12:53
Um I a question that we had, and you have touched on this a bit already, is um when we last spoke, you were cautiously optimistic about all the studies going on and the all of the money that had been kind of put into long COVID research. And we were wondering, how do you feel now about if or any uh progress that there's been in intervention research?
Gez: 13:22
It's incremental, right? Our understanding has advanced incrementally. The jigsaw puzzle that we've been filling in in terms of what is the picture, you know, the thousand-piece jigsaw puzzle that's slowly putting all the pieces in of us understanding what's going on in the condition. We've gone from having a hundred pieces in that jigsaw puzzle to having 200 pieces in that jigsaw puzzle. So we've got a better idea in some parts of that picture we've got a better understanding on, but we still don't really, we still don't really know exactly what's going on yet. And in terms of the treatments, I think we're just as far away as we were, and it just takes so bloody long for trials. So Professor Classworth, who I spoke to recently, they've just started developing a drug uh which is gonna help combat mitochondrial dysfunction, which is sort of potentially at the at the heart of MCFS and long COVID, any sort of fatigue and PEM-related conditions. And um, you know, but he says, you know, it's they're two years away from trials on it, um, and then it's gonna take at least five years to go to market, right? So even the stuff the the best hopes we've got are finding existing uh existing drugs that will somehow um be effective in treating some part of this puzzle, um, that's gonna be much faster, and then repurposing those for long COVID. But again, we're still gonna do the trials for those, and those trials still take years, and we're not hugely close to any sort of amazing sort of results there. We are getting some useful stuff. So, for example, if you catch COVID again, as we're all likely to, being humans in a planet that's infested with COVID, um, there are things um we can take like, oh god, brain fog, brilliant. Drug that begins with M.
Katya: 15:00
Metformin is the way here.
Gez: 15:02
Metformin, thank you very much.
Katya: 15:04
Well done, Katyas.
Gez: 15:06
So we've got we've got trials that have shown that metformin is effective at reducing the chances of developing long COVID. So whatever the action is of metformin, uh it's originally, I think, actually a diabetes drug, but it seems to help the body um or make the body less likely to develop long COVID after a COVID infection. So if your doctor's happy to prescribe it for you when you catch COVID next time, well then hopefully your long COVID isn't going to get doubled down on, which a lot of people have found at reinfection. So we are seeing some stuff around the fringes that's helpful, but um, but we don't, you know, we're still a long way from having that silver bullet or that miracle cure or whatever you want to call it.
Katya: 15:42
Can I just jump in? Um because I just want to say that interview with Dr. Wirth, Professor Wirth, sorry, is really good. I reckon I really would recommend that to our listeners watching that on YouTube because it is really technical. I actually didn't find it overwhelming. I I didn't follow everything, but I didn't feel I needed to follow everything to feel reassured that there is a scientist who is really looking at this and understands it, which was kind of what I needed. Um, but the thing I wanted to ask, you you mentioned it um when you're speaking about fasting. We had a listener write in because the last time we spoke to you, Jez, you also mentioned knowing people or having heard of people who have completely recovered from long COVID. And one of the questions we got from a listener was um, what did they do? So one of the things you've just mentioned is fasting, right? You know of someone who for whom fasting helps.
Gez: 16:37
Is there anything else that anecdotally I mean prepare your phone lines to immediately catch fire when I say the lightning process?
Katya: 16:48
Okay, that is quantifactual.
Gez: 16:50
Yeah, yeah. I have to do that. But if you talk to this is the thing, right? And I and I try and take a balanced opinion on all of this. We're not all uh um a what's the word I'm looking for? It means everything is the same. Um begins with H. Homogenous Homogenous. There we go. Thank you.
Katya: 17:05
What is happening, Jess?
Gez: 17:08
Well, I'm getting the message.
Katya: 17:11
Well, you are test.
Gez: 17:13
You are to do. So yeah, we're not all a homogenous group, right? It's it's a complex multi-system condition. There's many different parts of this, and we're all gonna respond to different things. And if you were to take, I don't know, a hundred people have fully recovered and ask them what they've done to recover, a bunch of them were probably gonna recover anyway, right? And they're gonna attribute it to the last thing they did. I stood on my head for five days and then I recovered, great. But it's not actually what caused the recovery. We've got the cause and causality um correlation and causality thing going on. Um but of that hundred people, I bet you you're gonna have five or ten say they did the lightning process. And do we just ignore that? I'm not saying go and do it. I'm not saying I'm not saying there's any science behind it, but I'm just saying that it seems that people recover and they do it. I mean, for you tried it. No. I don't think I think it's one of those things that could work for a certain proportion of people suffering with long COVID who maybe are in a part of their recovery. This is how I've described it before, they're in a part of their recovery where whatever the physiological um vicious circle is that's sustaining symptoms has been resolved, and they're stuck in basically what is now a nervous system loop. And the nervous system is the last part of all of this to resolve. And for those people, it might be, especially if they're stuck in a very agitated state that is hyper-vigilant state, that is perpetuating that nervous system disruption. That it might be that for those people, if they can absolutely buy into this process that changes the way they think and changes the way their nervous system works, it could break them out of that last problem they've got, and hey, presto, they find recovery. For people who've got catastrophic autoimmunity, the lightning process isn't going to help you one job. For people who've got rampant viral persistence, it's not gonna help you one job. It's not gonna help your mitochondrial dysfunction, I'm pretty sure of that. But for some people, it does seem to help. But my problem is that even if I was in, and the thing, we don't, none of us know, right, what what our ongoing problems are. We've got some idea based on our symptoms, but we don't really know what's driving them. Yeah. Um, you know, if I was one of those people it could work for, I think you have to be able to buy into it to be able to respond to it. And I'm just too fucking cynical. So I'm not sure I would benefit from it, unfortunately.
Katya: 19:28
It's like therapy, isn't it? Like we know therapy works. And uh going to therapy might also help you with some of your physiological symptoms. Like I had therapy all through the worst of my long COVID. But I did go to every therapy session believing that therapy is a really useful tool and that it would help me. Yeah.
Gez: 19:45
Um, so so yes, what are people doing to recover? Uh, in a nutshell, I don't I don't think you're gonna find much consistency in the answers when you talk to people who've recovered.
Hannah: 19:59
Yeah, uh this is why that very question and the answers to it, they just oh, they instantly it just makes my heart sink because I know it's just case studies of like different things on vastly different human bodies. And how how am I going to know is you know whether to apply that to myself? It's really difficult.
Katya: 20:22
I'm being a real doubter of the study. No, no, no. I didn't want to ask the question. It was because Jazz mentioned for a second time. Yeah, yeah. Yeah, no, I think it's a good question. I think it's important.
Gez: 20:32
Yes, it is a good question. But you will you also have to remember that I mean, I don't know if this is still current, but there was a study that showed a while ago that showed that 50% of people who have long COVID after whatever the term, either four weeks or 12 weeks, however they define it, 50% of them had recovered by a year, right? So let's say you took that looked at that whole thing. I just say I think six months or nine months, half of them are going to recover anyway. Sorry, Des. Sorry, I missed actually, I was talking over you, I didn't hear.
Katya: 20:56
No, it wasn't, it was me. I just came off to say I hate those people.
Gez: 21:00
Oh, sure.
Katya: 21:00
But I'm joking. I'm joking. Oh, my long COVID. Three weeks.
Gez: 21:05
Yeah.
Katya: 21:06
Sorry, Des. Would you please go back?
Gez: 21:08
No, it's fine. I was just saying we've got ask, ask that whole cohort of people at six to nine months and they're still suffering. Come back to them at a year. 50% of them have recovered, right? What are those people who are going to recover every anyway going to attribute their recovery to? They they all as humans, we like to believe in cause and effect, right? That's the way we've been programmed. That's the way that our minds work. That's the way that we write stories. We don't believe in charts, we don't believe in coincidence, especially if it's something happened that's meaningful, right? So we will attribute a cause to our recovery. How accurate's that gonna be when people are gonna recover anyway? So I think it's a very, very hard, it's a very important question, but not one as easy to find a good answer to.
Katya: 21:43
Yeah.
Hannah: 21:45
Thank you, Jazz. That was a great answer. Yeah. And uh have you noticed any changes in attitudes towards long COVID, either inside or outside the medical world or the long covet community?
Gez: 21:59
Um Since when, I guess. I mean, between if you take if you take the point we last spoke when I was three years in and now I'm five years in, maybe not a huge change in that time compared to the two years previous. Um what I would say is that there has been a slightly distressing sort of out-of-sight, out of mind part of the conversation that's happened to Long COVID as part of the general sort of debate and awareness. Um I still meet people who say, is that even a thing? And I'm like, yeah, unfortunately it is. Um just have a look at the long-term out of work figures for the UK, and that'll tell you it's still a thing. Uh it's two million higher than it used to be. Interestingly, corresponding with the number of people who have long COVID in the ONS figures. Um, so it's uh I think I think as time has gone on, you're more likely to meet somebody who's heard what it is, because as time's gone on, more people have met, more people have actually met a real person who's got it, right? That whole thing of it just being a myth, I think, has maybe gone away. But equally it's still very much back of mind. I don't we haven't made huge progress. We haven't had governments, politicians, health ministries talking about it. Um, the rest of the general public doesn't want to hear about COVID. It's not a vote winner to bring it up. So uh I think we are unfortunately sort of stuck in the cloakroom until something pulls us out.
Katya: 23:33
Um this just I know this question is out of order, but you just made me think there, Jazz. I and perhaps Hannah as well, we got I feel like we go through phases of recording the podcast. And I think a lot of it is just motivation, keeping positive, don't really want to make an episode that's like, oh, I'm still feeling really demotivated about this, oh, there's been another massive cut to NIH funding. How do you how do how do you manage like the psychological impact of talking about this? You know, given that it, you know, while we know there are millions of us, it's a small bubble not really understood by the healthy masses. And sometimes you do feel like no one else cares. How do you not, I don't know, go back to bed?
Gez: 24:21
I think I think a really important part of this for me is agency. And when I mean agency, I mean I'm not waiting for the institutions to solve this problem for me. I am gonna continue doing mad shit until I get better or die. This is on me, right? This is my personal journey. This is my whether it's destiny, whether it's fate, whether it's anything else, I am gonna take this on my own shoulders to do the best I can to recover. And I'm not waiting for anybody else. And when you take that mindset to it, it's much harder to get disheartened. Well, you get obviously disheartened when you try something, it doesn't work, I mean, as we've all done a million times, but at least we're not living in that perpetual cycle of like feeling that all hope is lost. We're still our future is still in our own hands, right? And that's kind of why I believe in these non-pharmacological interventions rather than the pharmacological ones for the time being. Because we we've got a moderate amount of evidence that suggests that you know I'd I'd much rather try and do something that shakes my body out of the vicious cycle it's got stuck in, which we've got enough evidence now to suggest that that is what's going on on a multi-system level. We've got much more chance of that solving the problem semi-permanently than taking an immune modulating drug that's gonna give you horrible side effects and improve 33% of your symptoms but give you five new symptoms, you know, which and that's probably the what's waiting for us down the pharmacological line at some point, you know, in the same way we've got drugs for lupus that kind of help some of that autoimmune stuff and the rest of it. That's I think autoimmune drugs are actually where we're gonna have the most fruit, actually. But again, they're not they're not symptom, they're not side effect free, um, nor are they magic bullets. So for me, it's about like that Jeffrey Rediger book, cured. What can I do to my environment? What can I how can I roll the dice in some batshit way that if nothing else, at least leaves me feeling like I'm can I swear? I've been swearing the whole thing.
Katya: 26:27
Yeah, you can.
Gez: 26:28
Yeah, it's fine. Um at least leaves me feeling like I've fucking tried, right?
Katya: 26:32
Yeah.
Gez: 26:34
That's kind of the way I come at it. Which because I think it's very easy if you if you're just left sitting there waiting for a solution to present itself, I think you'll just go mad.
Hannah: 26:43
That's kind of where I am.
Hannah: 26:46
Oh sorry, Hannah, go on. I was gonna say that's kind of where I am now, because I've quit my job finally.
Katya: 26:53
Finally, and when you did it, Hannah, you said I've been thinking for two years about what Jez said.
Katya: 26:59
Yeah.
Gez: 27:00
I've just made you quit your job. Two years of anguish and angst, and now you've just like given everything up. Brilliant, I'm sorry.
Hannah: 27:08
No, uh yours was um a small piece, don't worry. I there was some other major catalyst where I was like, partly it was just my body just could not do it any longer. Um, so yeah, I I was partly forced, partly through choice. Um, and yeah, I'm in that place now where I'm like, right, I'm just gonna throw what I'm just gonna throw things at this. I'm gonna just really commit and just try stuff and yeah, really take it on my own, uh, like get some agency back. So I kind of feel you. Uh whereas I think before I was just like, I can't give up my career. I'm just gonna plug along, I'm just gonna shuffle along through my life and hope that something eventually comes along that will cure me.
Katya: 27:58
Yeah, you have to wait, you have to wait for the research to happen. Because this is I would I was just going to the GP, waiting for the GP and then just going home from the GP. That method, you'd have to wait for the cure to be discovered, for it to then be used, and then you probably have to wait 10 years for that information to trickle down to your GP.
Gez: 28:16
Yeah, yeah, yeah. No, I mean, like you'll you'll die of old age before that happens. So, look, I I'm all about agency here. And the other thing about this too is imagine that you by taking that agency back and doing something batshit that works. Like, are you not gonna think I wish I'd done that a year sooner, two years sooner, three years sooner? And so by that token, the time to do that is now. The time you don't wait, because if it is gonna work, what why are you like just waiting for your life to just sort of dribble away before you try this stuff? I think the time has to be now. So I thoroughly endorse your decision, Hannah, to go for it.
Hannah: 28:56
Yeah, thank you. I think I might have Jess's approval.
Hannah: 28:59
Yeah, uh I think what's the next question, Katia? Was it your?
Katya: 29:07
I think I might go. I feel like I want to go to the specific question we got from our listener, Natasha. Oh, yeah. Just because we've already asked Jez about um so Jess, yeah, we had a listener from Australia who wrote one of the nicest emails ever, and she was a huge fan of you. And she wanted us to ask you if you have any advice or tips on how to manage symptoms in PEM when traveling, particularly navigating busy places like airports and getting through the flights specific, but I think she travels, and we all we all travel a bit these days.
Gez: 29:38
So this is so individual, right? So it all depends on what it is that blows us up, and that's a bit different for everyone. So flying is horrific. So for any kind of European trip now, I drive because personally I can drive more easily than I can fly. And I say that because driving involves me walking out of my house, sitting down, and then after a certain number of hours, standing up again and walking away again, right? I find that as yes, there's obviously the cognitive load of driving and that, and I do have to be careful, I do have to take lots of breaks, and I can't drive like I used to, but I find that a hell of a lot easier than the schlepp required to get yourself to an airport, to get yourself through the airport, to get yourself onto the plane, the horrible feeling of claustrophobia that I now have on the plane, the mask wearing on the plane, the heart rate doing 100 the whole time you're on the plane. It's really bad for your nervous system. It's it's just it's just hot like flying is hard. If you can only fly, I know other long haulers have done things like get the accessibility stuff. So if you ask your airline, they can basically sort out a wheelchair for you, so you can remove some of that schlep. Challenges with that, obviously, are you end up hanging around waiting for that service a long time? How does your ego feel about it? My ego wasn't going to tolerate it. Probably would have been a good idea for me, but my ego couldn't handle it. So that wasn't an option I was ever available. You know, I you know, pride, ego, again, you know, seven deadly sins and things. Um, but that is one way of mitigating it. But fundamentally, flying is hard, I think. Traveling fundamentally is hard. There's a there's a few things you can do, but again, it's all the standard old boring pacing stuff, like make sure you rest for two days before you have to travel. Make sure it's not that frantic old-fashioned, I say old-fashioned as in pre-COVID, the frantic, super busy few hours before you travel getting everything sorted. You've just got to plan way ahead, get your packing done, get everything organized, so that before you travel, you can actually rest. Um, equally make sure that your plans at the other end mean that when you arrive, you can rest. You're not straight into doing stuff. Jet lag. I haven't had to deal with too much jet lag, but again, that's brutal for nervous system. And I mean, it's just it's like the question is a little bit like how do you deal with marathon running when you've got long COVID and PEM? And the answer is don't. Um, if you can possibly help it. I mean, again, you've just you have to you have to be on. I think my first thing I would say is understand what it is that is worst for you to have to do. Is it standing up? Is standing up on the spot a killer for you? In which case, make sure you bring a suitcase with you or a hand luggage with you that you can sit on when you're queuing. You know what I mean? It's this sort of thing, is identifying what your your particular Achilles heels are that trigger your symptoms, and then try and mitigate those as best you can. But I think there's only ever so much you can do when it comes to things like flying, because there is no really easy way of doing it. And also I've caught COVID, I've had COVID three times, first time, March 2020, two second times off planes. So that's another really strong reason why I avoid them like the plague now. Literally, like the plague.
Hannah: 32:47
Yeah. Yeah. I I um I'm so kind of relieved to hear you say that because I like I found flying just absolutely killed me. And it was really hard to try and explain to my family, like, why it's so hard for me to fly to Guernsey and back where my family live in the Channel Islands. Um yeah, and uh I have to go there in May. Um, obviously I want to go there, it's my sister's wedding, it's gonna be amazing, but um, I'm gonna try taking the ferry now where my husband is just gonna drive us straight onto the boat and then uh we'd like transfer. I mean, but I can always just go back to the car if I'm just like it's just too much on the boat. Um, and yeah, we'll drive off. And I'm hoping, hoping that will be better.
Gez: 33:37
The ferry will be a thousand times better than than trying to fly. It really will. And the other thing I would say is try and get there a day earlier than you would otherwise so that you've got time to rest there before the wedding happens. Yes. Um, parties are hard with long COVID. It's another thing that's really hard is the noise. For me, I get uh noise sensitivity, light sensitivity, and again, and beyond that, that cognitive effort it takes to understand what someone's saying to you in a noisy environment. I've never perceived how great that was until I had long COVID. Oh my god, it's hard. Yeah. It like uses like I don't know, 100% more brain power to try and listen to somebody in a noisy environment.
Hannah: 34:13
I feel like my brain is a really like old phone in those situations where the battery like dies in like an hour.
Gez: 34:19
Yeah.
Hannah: 34:20
Yeah.
Gez: 34:21
Yeah.
Katya: 34:22
Thank you for that. Yeah, it was an impossible question. Um, so well done. Hannah, do you want to ask your your question about Yeah?
Hannah: 34:30
So um I recently read Alex Howard's book, Decode Your Fatigue. I'm currently with the going through treatment with the Optimum Health Clinic um that he founded. Um, so I'll kind of be able to say at the end of it all kind of how it's worked out. But yeah, I I was just wondering, one, are you familiar with his work and do you have any opinions on that? And then also, are there any other kind of books and things that you'd recommend? You recommended Cure to Katia last time and it was really good read for her. And yeah, is there just any other kind of names, books on your list at the moment?
Gez: 35:09
So I'm aware of that book, Decode Your Fatigue. I have not read it. I can't unfortunately comment on Alex Howard or his work. Um I have been sent, again, I can't vouch for this. I've literally just been sent this book, Understanding MECFS and Strategies for Healing by Patrick Usher. Uh, the foreword being by Professor Wirth, who I spoke to on YouTube recently. Again, I I haven't had a chance to open this yet, so I would hesitate to recommend it, but I do like Patrick and what he's done before. Um so this is a bit of a dull answer because the answer is the reading I have been doing has not been around this subject when it comes to books and things that recently. I've been trying to take my reading into more interesting directions, and I've been reading a lot more fiction and escapism because I found that better for myself rather than hardcore to process science stuff or self-help books that make me feel bad for not being able to do the things it says I should do.
Hannah: 36:05
Oh, definitely. Yeah, I've been there. I had to like completely stop listening to my old podcasts and things, which had their bit of a self-help slant. I was like, no, this is just killing me listening to this stuff. I spent, I've been, I recently finished Thomas Hardy's um Tess of the Derbervilles.
Gez: 36:24
Oh, I've never read that. I mean, there's easier reads than like 19th century fiction. I mean, I go for like super modern, like dot, you know, like even a five-year-old can read its stuff.
Hannah: 36:34
I was gonna say, I'm an English lit student, so 19th century fiction is my like happy escape everything place. Um and I was like, wow, I got more out of this than I did out of trying to yeah, read some science ebook on chronic fatigue.
Katya: 36:51
I find science fiction or just like anything about space just helps me. I just love it. I'm I'm reading orbital, which is like Oh, I have thoughts on that.
Gez: 37:02
I have thoughts on that.
Katya: 37:03
It's short. Okay, so I haven't finished it yet, but I love it. I'm just reading like what the people on the ISS do each day, and I'm like, oh.
Gez: 37:10
So I'm a bit of a I struggled with orbital, to be quite honest. I read the play and I'm like, this is exactly this is exactly up my street. I love this philosophical sci-fi type thing about what does it mean to be alive, what's our place on the earth. All of that stuff is my sweet spot. But it's the literary equivalent of an art house movie.
Katya: 37:30
Oh, but that's my favorite. I really love those kinds of like really slow interior.
Gez: 37:37
Yeah, if some shit blew up in it, I'd have been much happier.
Katya: 37:39
Yeah, it's not the Martian or like Project Helm Mary, which is. No, it's not gravity.
Gez: 37:43
If it had been gravity, I'd have been banging there, but no. No, no, no. Not enough explosions. No.
Katya: 37:48
Um, okay, I know we're at the time, so I'll ask one more question, which is actually Des, is there anything that you want to bring up or that you're excited about working on in or out of long COVID? Anything you want to share?
Gez: 37:59
Uh yes. Okay. So um have I spoken to you before about my own literary works?
Katya: 38:11
No, I we didn't know. Do you write?
Gez: 38:13
So, well, I mean, look, so my history is filmmaking. Um and I wrote several screenplays back in the day. And um, they got to various stages of development out in LA, and I was flying around trying to make them happen. The business is a horror show, um, but that's by the by. But the point is, is that once I got to a point, I'd written a long COVID handbook, I found myself with a literary agent, which is a very hard thing to do, and I thought, why? I can't go back to filmmaking. My health isn't well enough to go back to going to that wretched world. Um, but maybe I can still tell stories. And I still have two of these screenplays, which I really believe in that would really work as novels. So I've written the first manuscript and I'm halfway through the second manuscript at the moment. Um, and I'm quite I'm really enjoying the process. Turns out that it's and it's an interesting, I mean, this is a different sort of thing. Normally, when it comes to adaptations, uh, writers take novels and turn them into screenplays, and that's a work of reduction fundamentally. You you try and identify the story beats in the novel that will work. What it is well, what are the nuggets that really get you excited about the novel? How do you translate that across to the visual medium? And then what story beats do you take? Because the structure often ends up being a little bit different because you have to compress it. But suddenly, when you go the other direction, it's a completely different sort of challenge. Because in a screenplay, you uh you leave room for so many different roles to bring their creative stamp to the process, whether it's the director, whether it's the actors, whether it's the cinematographer, whether it's the costume designer, the production designer, the um everything. Conductor, musician, what's the word I'm looking for? The composer, bloody hell. Um, so all of these departments have you leave room for them to bring their flavour to it. But suddenly, as soon as you go to writing a novel, you're creating this entire world yourself. So you have all of that work to do yourself. So there's all of these decisions that I'd intentionally left for the actors to do backstory work. Like, yeah, that's fine. Now they can solve that problem. Like, oh shit, I've got to do that myself now. So it's been quite a really interesting and rewarding challenge, actually, writing those manuscripts. Um, and I'm excited that you know they can start going out to publishers, you know, at some point. And um maybe I won't just be a writer of science journalism and miserable things about long COVID.
Katya: 40:30
How how exciting! Like my whole family writes so I know, not not with no with no commercial success so far, but I know what a process it is. So whatever happens, Jess, send them over to Hannah and I because we're avid readers. Really? Yeah, yeah, we did increased together. So really, yeah, yeah, you've given us so much time, and I would love I really enjoyed after was it after death or after death. Yeah. So it's I would love to read what what else is coming from your brain.
Gez: 40:59
Okay, well, so I'll I'll give a quick pitch now. Uh the first manuscript's called The Last Flight, and it's a thriller set on board the last plane in the sky on the day the world ends.
Hannah: 41:07
Oh my god. Okay, nice. Sounds amazing.
Gez: 41:10
Yeah. Sounds like my genre. So yeah, if you're if you're into that, I'll happily send it across to you.
Katya: 41:15
Yeah, do. Um, all right, we're at time. I just have to say thank you.
Gez: 41:20
So I know you guys might be frazzed. If there was more you wanted to talk about, I'm happy to have a break and come back and give you a bit more. So it depends on how you guys are doing.
Katya: 41:27
I'm on my paid work time because I I didn't do a Hannah. Hannah, do you have anything else you wanted to say or us?
Hannah: 41:36
Um no, I don't, but I think that's because I'm at the ending your toast. When I yeah, when I when I was kind of ended up leaving my job, I actually like I really burnt out and now um I'm like at a lower baseline than I was before. Because I just was pushing myself too hard. So yeah, my tolerance isn't great these days.
Gez: 42:00
Identify, yeah. I I I get it too. I can tell that I'm struggling to understand what people are saying to be on a call. Normally at about this point, 40 minutes, so I'm with you.
Hannah: 42:08
Yeah, yeah.
Katya: 42:08
Thank you.
Hannah: 42:09
It's been great speaking to you. Thank you again. Yeah.
Katya: 42:11
Yeah, thank you, Jazz.
Hannah: 42:13
Pleasure.
Katya: 42:14
Thanks so much for listening. We hope you enjoyed this episode and that you join us next time.
Hannah: 42:19
If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to boundenergy at gmail.com or find us on social media at bounded energy.
