Long Covid Podcast

46 - Gez Medinger - Patient Advocate, Researcher & Author

August 03, 2022 Season 1 Episode 46
Long Covid Podcast
46 - Gez Medinger - Patient Advocate, Researcher & Author
Long Covid Podcast
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Episode 46 of the Long Covid Podcast is a chat with patient advocate, researcher & author Gez Medinger who many of you will know from his wonderful YouTube videos on Long Covid.

We chat around his experiences of Long Covid, how this led him down a bit of a rabbit hole and the book which has come out of it! It was great fun chatting and hopefully we've come up with something useful for you to listen to.

There is the potential for a follow-up, so do send in your questions!

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The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cover costs.

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Please get in touch with feedback and suggestions or just how you're doing - I'd love to hear from you! You can get in touch via the social media links or at LongCovidPodcast@gmail.com

**Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Ple...

Jackie Baxter: Hello, and welcome to this episode of the long COVID podcast. I am absolutely delighted to welcome Gez Medinger to the podcast today. So we're going to be talking about all sorts of things around long COVID obviously, his experiences and all the work that he's been doing. So welcome to the podcast. 

Gez Medinger: Thank you very much for having me.

Jackie Baxter: It's a pleasure to have you here. So to start with, would you mind just briefly introducing yourself and what you do. 

Gez Medinger: No problem. So, until March 2020, I was a filmmaker, and avid marathon runner and unfortunately, in March, 2020, like just about everybody else in London, I caught COVID. Um, although we didn't have any way of showing that we had, because there weren't any tests. I didn't get better and my symptoms continued to change and I thought something funny was going on that reminded me of when I was ill for a year after Glandular fever back in 2000. So I made a film for YouTube looking at the science that linked what we knew about postviral fatigue and postviral illness generally to what we knew about COVID.

And I sort of put it out there wondering if anybody else like me was still really not feeling well after sort of five or six weeks. Cause again, the news, right? This message wasn't out there. No one was talking about not getting better. You either went to hospital and maybe died or you got better straight away in like six days or whatever.

Anyway, so I put this out there and suddenly found tens of thousands of people who were in the same boat as me. And that was sort of the start of the rabbit hole that I went down a little bit like Alice. And I've been sending down that rabbit hole for over two years now and now I consider myself to be a patient advocate and a researcher, and an author about the condition.

Jackie Baxter: Yeah. I mean, going back to March 2020, it's quite hard to remember in some ways isn't it, cause it was such a long time ago, but it sounds sort of similar to me, you know, we. thought it Was just us didn't we, that wasn't getting better. And it sounds like you had a previous experience that made you realize and catch on maybe a little bit quicker than I did, but I really did think it was just me until, you know, several months later, 

Gez Medinger: a lot of people are in that boat. A lot of people, you know, right deep into 2020 were like, uh, what's this, because the media only started talking about long Covid it was many months later. And even then it was at a fairly low level. So a lot of people, but they weren't familiar with it, or they're being gas lit by their doctors. Lots of people were struggling for a very long time before they realized what was going on.

Jackie Baxter: Yeah, definitely. And I guess, because everything else was so bad as well, the only thing we heard was the death toll at the time, you know, and it was quite scary in a lot of ways I think. And, yeah, I dunno how you felt about this, but I certainly remember it just all completely passing me by because I was too ill to really notice all the bad stuff that was going on.

But then when I spoke to my doctor and I said, I'm not getting better. Like, what what's going on? And it was almost like, it's not that they didn't care. They just didn't really have the bandwidth to deal with it at the time because everything else was so awful. 

Gez Medinger: Yeah. That's pretty much it.

And they also couldn't do anything either. Right. There was no information for them about Long COVID it's, uh, you know, doctors work from evidence based medicine and we had noevidence at that time. And we certainly had no published papers in journals describing what it was. We had an early piece written by Trish Greenhalgh talking about it that went out for GPs. That was in late 2020, I think. But generally speaking, yeah, there was very little resource on it. And even now, even now in sort of mid 2022, we're still hearing stories of people going to their doctors and their doctors going puff. You know, you just need to get out and exercise more or long COVID, it's not a thing or whatever.

Right. There's still plenty of that around now. So. There's still a lot of work to be done. no Question. 

Jackie Baxter: Yeah, definitely. Cuz I, always wonder about this, you know, should we have learned from the people with ME, for example, should we have learned from them earlier? 

Gez Medinger: Of course. Obviously, 

Jackie Baxter: yes, the answer is obvious, isn't it?

But, I don't know. It was all, all this kind of talk about, oh yeah, you'll be fine. The government is equipped to deal with it. And you're like, haha okay. ... 

Gez Medinger: Yeah. And even like, wahey, we're gonna launch load of long COVID clinics. Well, first of all, good luck getting referred to one. And even if you do get referred to one, it's gonna be geographically dependent on where you are, even whether you can or not.

It'll then take 6, 9, 12 months to get into one. And even when you get there, You know, even if you're seeing consultant led care there, do they even have the evidence base to deal with what's going on in long COVID? The answer is not really. So, you know, if you ask a number of people who actually have been to a long COVID clinic, whether it's significantly helped them, the answer is a very small proportion of people will say yes to that.

So it's all very well, you know, in the news going wahey, we've got long Covid clinics. Functionally for the vast majority of sufferers, you know, it doesn't make a lot of difference. 

Jackie Baxter: Yeah, absolutely. It's almost like they need that help right at the start. So by the time they get there, they've worked out how to pace.

Gez Medinger: Well, exactly. and again, not all the long Covid clinics are gonna tell you to pace. That's the other bit of a problem here is that some of them are gonna tell you to get out more and exercise more. So there's quite a variable degree of awareness about the right way to deal with long Covid still out there.

So it's yeah. It's challenging. 

Jackie Baxter: Yeah, for sure. And then in Scotland, we don't actually have any . 

Gez Medinger: Yes. Okay. Okay. Brilliant. 

Jackie Baxter: So I dunno what we're supposed to be doing. Yeah. Um, yes, it is. It's very interesting isn't and there's a huge variety. How did things go for you? I mean, you obviously dived straight into trying to work things out. Did you find anything useful sort of early on? 

Gez Medinger: Uh, the most useful thing I found early on was speaking to Tina Peers and finding out about MCAS. My presentation has been very MCAS-sy and getting on antihistamines and getting onto a low histamine diet was absolutely critical to managing my symptoms. So that was something that I found out sort of summer 2020, and that's still a mainstay of me managing my symptoms.

ALthough I'm less MCAS-sy now than I was back then. And Dysautonomia management was probably the other biggest thing as well. And I maybe didn't appreciate just how dysautonomic I was cause I didn't have PoTS. So if you're not Potsy then it's sometimes hard to realize if the symptoms you are having are disautonomia or something else.

But once you start to realize what the triggers are and when you do certain mitigating things and then things get better, then I'm like, oh, okay. So I now see that this symptom is disautonomic, this symptom is disautonomic. And this one is dis - once you can start to package some of those symptoms up, then you understand when you are starting to overcook it, and then you can manage accordingly.

Have you overcooked it because you add something wrong or have you overcooked it because you've been doing a task for too long. And so being able to differentiate between those two things is important too. 

Jackie Baxter: Yeah, for sure. Cuz I think certainly for me at the start there was just, there was so much that it was really hard to even get a handle on any of the things, but then once I'd started to tackle kind of one thing for me, it was the breathing was the first thing that really made a difference for me. And once that started to improve, it's like you could sort of see the wood for the trees a little bit more. 

Gez Medinger: Yeah, there's a huge amount. Right. And, and the other thing as well is that it's incredibly complex. So even just being able to start trying to pass out some of those symptoms and work out what your own personal share of sort of driving conditions. So like if you break down sort of long COVID symptoms into a few categories, we can say that some of it is metabolically driven. Some of it is mast cell driven. Some of it is dis autonomic. Uh, some of it may be related to vascular and again, like the vascular one is like - I'm talking here about the clottty blood and poor oxygenation of tissues.

Does that go into the metabolic category or does that live somewhere else? But again, that's it's own thing. And then you've also got potential organ impairment. So people who've got actual lung damage or, you know, maybe cardiac issues. So trying to work out where your symptoms are coming from out of all of that and what your own personal balance of those elements is, is a huge part of the puzzle.

And it's different for everyone. So that's where there aren't any hard and fast rules. A, there's a huge amount of stuff going on. And each of those sort of four categories can spit out two, you know, between them, they spit out 200 symptoms, but some of them cross over. And so it's, it's incredibly complicated and it can be really, really difficult to differentiate between them.

And then how much of any symptoms you are having are PEM? Post exertional. So how many of your symptoms any given day are because you did too much the day before. And for me, I know that if I keep my step count really low and do no work and stay off screens and don't overstimulate myself, my symptoms will be significantly better and I will feel significantly more like a normal human being the next day, but I can't. Or I'm not prepared to live at that low level of intensity because then it basically involves doing nothing. And I've had too much to that I feel like I need to do whether it's making YouTube films or earning money to support myself or writing a book or whatever. So I've sort of been running at a low state of post exertional malaise, but some people be running at a high state of post exertional malaise where all of their symptoms are massively, you know, driven by that. And they won't even identified that they're still doing too much for whatever their energy envelope is. So look, it's an incredibly complex landscape to try and navigate, you know, and, and if you're just coming into it fresh, I mean, I'm only just getting my head around where I'm at on all of this.

It's taking me two and something years. So, you know, so if you're just only now hearing about long COVID and, and experiencing long COVID, then it's really difficult. 

Jackie Baxter: Yeah, it really is. I mean, I remember speaking to somebody who said, it's like learning your new body and you've got to understand all of the sort of different things that you are able to do, not able to do.

And it's not like it's even the same every day either is it? You know, you have a good day and a bad day and you need to know how much you can do on either of them. So this sort of unpredictability, um, that makes even once you think you've got a handle on it.

Gez Medinger: Yeah. So one of the biggest sort of barriers to pacing, cuz pacing obviously is critical in all of this, but weirdly one of the barriers to pacing is the good day because when you have a good day, well, it depends on how good your good days are relatively. But for me, my good days, I don't feel too far off normal provided I don't obviously go and like run or something like that, in which case I'd fall apart very quickly, but like just going around the house or dealing with emails, I feel relatively normal. So it's really easier for me in a good day to overdo it.

And then you blow up and then it's a world of pain. So being able to hold yourself back on a good day and look at what you want to do, and the 50% rule I've heard you use, which is quite a good guide on this. Only aim to do 50% of what you think you want to be able to do. And if you get away with then, you know, maybe you could try 60% the next time you have a good day. But if you don't, then you won't have blown yourself up anywhere near as badly as if you'd just gone and done a hundred percent of what you thought you could do. 

Jackie Baxter: yeah. Which is just frustrating in itself. Isn't it? Because you know, when you get so few good days, of course you want to go and do all the things on your good day.

Gez Medinger: Yeah. Well, the list has backed up, right? The list has been backing up for days or weeks or months 

Jackie Baxter: or two and a half years 

Gez Medinger: or two and a half years. Yeah, 

Jackie Baxter: definitely. It is. It's incredibly difficult. And then, you know, that causes a huge amount of a mental toll on top. Doesn't it? 

Gez Medinger: Yeah. I mean, there's so many different dimensions in which long COVID is the ultimate head fuck where it takes what you think you know about yourself and then strips it all away so that you can't even trust your own faculties anymore.

And The degree of sort of gas lighting that your brain and body does to yourself in all of this, where it goes, oh, look, you feel okay? You can do this. No, you can't. And it'll only like punish you after the fact. Right. And, oh God. I mean, so even just the emotional burden of doing relatively straightforward things.

So last week I had all of the notes. I had the, the copy edited draft of the manuscript came back to me on my long Covid handbook and it had an incredibly insightful, meticulous, technical set of notes across the entire book on pretty much almost every sentence in the whole book. And I had to turn this round in three days.

And normally it's one of those things where if you're well, you just sit down and it might be difficult and it might be challenging, but you can sit down knuckle down, try and focus, remove distractions and just motor through it step by step by step, but with long COVID where my ability to focus, and the stress of this, I think as well, just made my long COVID worse.

So I, I couldn't focus. I couldn't even read at times I couldn't process the information and my emotional state was really- ropey as well. So just being able to do the work and it took me four days in the end, but it required every ounce of like intellectual, physical, but also emotional energy that I had to get through that.

Whereas what I was doing was not necessarily that - shouldn't have taken an emotional toll, but absolutely it was because I couldn't trust my faculties. The one thing I've been able to rely on during my life generally is I can rely on my brain to work and I can figure stuff out. And, and here I. I could look at a sentence and just not understand it.

Even the stuff I'd written, I'd look at my own paragraphs in the book. And it was like double Dutch. And I was like, oh my God. So I'd have to go off and take a break and I'd come back and I'd see if I could do it then. And sometimes I could, sometimes I couldn't. And this is what I mean that like the ground under your feet is perpetually shifting, even when you're trying to do things that you should be able to do even with long COVID suddenly, then you can't and yeah, really, really difficult. And, and, you know, that was almost, you know, up there with the hardest days I've had in the whole of the last two something years, yeah, 

Jackie Baxter: it really is. It's almost like it takes all of the things and maybe all the things that you value the most as well.

Yeah. I mean, I've definitely, I've never thought in my life about my health. It's just been something that I've had and I've generally been very fit, active all the time. I go up mountains for a hobby and losing that. It's just something you never thought was happen. Isn't it. And the same with your sort of mental ability to just read emails , you know? 

Gez Medinger: Yeah. To be able to look at a sentence and understand it, you know, I mean, we don't ever consider that wouldn't be something we'd be able to do. Right. And, but I broke my pelvis 2020, but whilst I had long COVID, but people immediately with a broken pelvis were like, oh my God, that's all awful.

You know, I had a week in hospital that's terrible. And it was painful. But it was like not a jot on long COVID because I, I can deal with impaired mobility. I can deal with high pain levels. I can deal with the other stuff that comes with a severe injury like that. But what breaking your pelvis doesn't do it doesn't steal your mind.

it doesn't like compromise your ability to have a conversation or to be able to read, or to be able to watch something. You know, it doesn't compromise your ability to eat the food you want to eat. It doesn't compromise your ability to sit at a desk and work or do any of that stuff. Whereas long Covid robs all of it.

You know, all of the stuff that you might have used to like doing, and even the simple pleasures you're suddenly like, if I just want to, I don't know, just go out into the garden. I'm even thinking about if I'm a bit PEM-ed. Do I want to add those steps to my day. Right. Even the simple stuff, let alone, like while I've like some chocolate, but I know that's, I'm gonna react to it.

So I can't have a chocolate. I can't have a cup of tea. I know I'm gonna flare up afterwards. So that's how sort of, yeah. How horrendous it, it gets you in all sorts of dimensions that you wouldn't ever exist could be compromised until you get long COVID 

Jackie Baxter: and you know, with, with breaking a bone or, you know, an obviously physical injury like that, there's an end date on it as well. Isn't there, you know, you know, it will heal. 

Gez Medinger: Yeah. You know, what's gonna happen. Yeah. And, and if it won't, then at least you have a sense for what the prognosis.. You know, let's say you break something in a way that will happen an implication. Well, the docs will be able to say to you, this is the implication. With long COVID we still don't know what the implication is. You know, there's one really terrifying article that's just been published with on the Oxford university press by a guy called John Patcai P a T C a I, if you wanna Google it. And it's looking at the long term outcomes for people with long SARS, basically, from a cohort in Canada about 50 people.

And the reality for them is that they're all still fucked. Like, however many years we are at now, like 19 years later. Now what does need to be said is that these were all people who were severely ill and in basically intensive care with SARS one at the time, but they were otherwise fit healthy young people.

And so the point that John patcai makes in the article is that, that, you know, it, it wouldn't be a surprise to see that some people don't get better from long COVID in time, unless we work out what's going on and work out how to fix it. And I agree with that and I've kind of agreed with that from the start.

I don't think recovery is going to be a given and I think some people will recover and there are many things that we can do to improve our chances of recovery and things that we can do to almost guarantee that we won't - like not make any accommodation for pacing. if you just try and live your old normal life and your long COVID is severe. You won't recover. You'll be living in a constant state of automatic crisis and your body won't have a chance to recover. Um, but yeah, it, it, that sort of paper for me, highlights the importance and critical pressing nature of us cracking what's going on with it and developing treatments.

Although, I don't think that either of those things are gonna happen particularly quickly. 

Jackie Baxter: No but I guess, you know, you can see from people who have had ME for decades as well, that 

Gez Medinger: yeah. There will be people who have, who are in a very similar position with long period, unless we crack it. Exactly. Um, but equally people with some people with me do recover after 2, 3, 4, 5 years.

I know people who have done it does happen. Generally speaking, those people who have recovered made a set of changes that helped precipitate their recovery. And I think the same is going to apply to long COVID. If you've been ill for two years and at this point you don't change anything or do anything differently than you've been doing in two years till now. And you are not particularly improving on a month by month basis. I'm not sure that suddenly at two and a half years, or three years, you're randomly gonna improve. I kind of feel that we can either wait for treatments or we can try and make some significant changes in our lives that give ourselves the best possible chance. If you are at two years. 

If you're at six months and it's still a very good chance, you will recover. Cuz we are seeing people recover in the first year more commonly than those who have been going through it for longer. 

Jackie Baxter: Yeah. I'm sure I've noticed that, but yeah, definitely. I think, you know, if people are able to sort of get some of these, I was gonna say interventions, I'm not sure that's the right word...

Gez Medinger: well, it kind of is, you kind of have to stage an intervention on yourself, which is okay, I have to very quickly reframe my life and prioritize my health as opposed to prioritizing all of my hobbies and the other things I might need to do. And for some people it's very difficult. They've got family, they've got work, you know, how do you prioritize your health in that scenario?

But if your work is making you ill, or precipitating and perpetuating your illness, you will have to make some modifications, you know? 

Jackie Baxter: Yeah, for sure. Cause I think, yeah, the sooner people can start doing those things, the better their chances are. I mean, there's obviously a lot of other things in play as well, because you know, if you have children and you need to work in order to feed yourself and your kids and keep your house, then you know yeah. You know, it's obviously...

Gez Medinger: it's catch 22. 

Jackie Baxter: Exactly. Yeah. You know, you lose your house. That's not gonna improve your chances of recovering is it? 

Gez Medinger: I Say it's not, no. And here's another way in that long COVID is just, I'm was gonna say evil. It's not a word I like using, but the way that it's like, you have to try and avoid stressing yourself on a physiological level, whether, and so when I say physiological, I mean, you know, included in that are emotional stresses as well as physical stresses. But the very existence of having long COVID is inherently stressful and it creates more stress and more difficulty at every single level of everything that you do.

So how are you supposed to somehow now live some sort of Buddhist sort of peaceful Zen existence. It's incredibly difficult. And that's the irony of the thing is that the one thing you need to do is made 10 times harder. 

Jackie Baxter: Yes. Exactly. Yeah. I've definitely found that the physical stresses are much easier to avoid because they're more obvious.

It's the sort of emotional ones, you know, I have an argument with my partner and suddenly I go into meltdown and, you know, you can try and avoid that, but it just happens because Long covid is stressful for him as well as for me. 

Gez Medinger: Yeah, of course. And, you know, for example, the me having to get through the revisions last week on the book, Like, the emotional stress of just seeing this mountain in front of me that I didn't believe I had the faculties climb was so stressful that put so much autonomic stress on my system, that my symptoms got worse and then it made it even harder to do.

Right. So it becomes this sort of vicious cycle of just multiplier effect where, yeah. Horrendous. 

Jackie Baxter: Yes. It's like we, we make it worse and worse and worse, but we can't help, but do that. 

Gez Medinger: Oh, to be honest, the talking, I find easier than the listening. Listening is what exhausts me. And especially with certain types of processing, I find hard.

So visual processing. So let's say driving a car or physical stuff. Generally not a problem. It will tire me out, you know, but it's not awful. I can do it. But phone calls, zoom calls, even in person conversation, I find much, much harder. Watching the TV is fine. I can understand what people are saying on TV, but as soon as you make it a person I'm talking to. It weirdly uses a different part of the brain and it's, it's like five or 10 times worse to try and keep up and keep processing. That kind of dialogue. 

Jackie Baxter: It is, isn't it - it's in and out as well. If you're watching TV, it's all one way, isn't it? Yeah. Yeah. That's a really good point. I'd not thought of that.

Yeah. And you've mentioned the book a few times. This is exciting. how did this come about? 

Gez Medinger: So, ah, that's a good question. It was fairly serendipitous, to be honest. So How far back do I go with this - kind of for the last five years I have been feeling a slight unsettledness about whether the sort of the course my life was going on was in the right direction.

I started production company up in about 2002 and, and I ran that for 10 years. And then after that, I sort of focused on making movies and I made a horror movie, it got released in 2015. And after that, I was trying to get my second movie off the ground. But the problem with that whole business, as much as I love it. And as much as I love telling stories on screen. Is that the whole sort of the financial dynamics of that industry are hugely in flux and it's not an easy place to make a living. And it's not an easy place to be making independent movies right now because the bottom is absolutely fallen out of the back end of it.

So you can't basically make any money from the movies you make. So if you can't make any money from the movies you make, you can't raise the money to make them because no one's gonna get the money back. So, unless you are making stuff for one of the big streamers, so Netflix, Amazon, Hulu, whatever apple, it's kind of, you know, tumbleweeds out there.

So the answer is how do you get in the door with the big guys? Incredibly difficult is the answer, unless you made a bunch of stuff, but how do you make a bunch of stuff when it's too expensive to make a bunch of stuff and you can't..... anyway. So I was becoming a bit disillusioned with all of that. And as a result of that, I was sort of looking for a way of doing something that was gonna just create another way of earning a living that was meaningful. Um, and I kind of got into the medical side of what I was doing in the sort of the long COVID research side of things and the advocacy. And I started a paramedic science course, and I did a year of paramedic science with long COVID whilst doing all the rest of this stuff and earning a living.

I don't quite know how I did it. It was challenging, but the, where I really came up against a brick wall was when I got to placement, which basically involved bouncing around the back of an ambulance for 12 to 14 hour shifts. And I went into it in a really good state of health. And after two weeks I was not doing well.

And I sort of made a call that this wasn't sensible to continue with the placements. And, and I knew that in, as I was doing that, it was gonna involve deferring for a year, but I was also considering whether actually it wasn't for me anyway, because turns out that I don't function so well or so happily if I'm being asked to operate inside a box.

And when I say that, I mean like figuratively and literally, in the case of the back of an ambulance. Put it this way, if you're working for the ambulance service, there is no scope for independent thinking, no room for ideas, or this could be done better this way. And surprisingly, the one thing that might redeem it, which is actually helping people and patient care, you would be surprised at how far down the list of priorities in reality it is. 

And the combination of all of those things, I was a bit disillusioned anyway. So I stopped my placement and the very next day I met an author, called Kate Weinberg, um, who also had long COVID. And she said to me, you should write the long COVID handbook. And immediately I was like, well, obviously, because there's this fundamental, huge problem out there, which is - where's the information on long COVID. The answer is it's dotted around all over the internet in thousand different forms. If let's say you catch COVID, you're a normal person and two months later, you're not right. And you're like, uh, I just Google long COVID. How do you get access to all of the lessons that have been learned by the community and by the ME CFS community and long COVID and, and, and all of the thinking that's been accumulated in the last two and something years.

And how do you differentiate the stuff that is legit from the stuff that's horseshit. very difficult, right? I mean, you could find your way perhaps to my YouTube page and sit through all 80 of the films I've made. I mean, that's quite an undertaking. I wouldn't blame anybody for not doing that. So the world desperately ...sounds a bit grandiose by saying the world, but we desperately needed a resource that brought all of everything that we knew together.

And so it just struck me that long covid was a problem that wasn't going away. It was only gonna be getting bigger. It's not just the UK, it's all around the world. And I thought this is just a brilliant idea. So Kate helped me put together a pitch document and we went out to a number of publishers and, and a lot of them were like, this is really interesting. But not for us right now.

And I was like, Hmm. And that was kind of like our first round of, um, actually it wasn't publishers we went to, it was agents, literary agents. And so I was like, huh. Okay, well, we'll have sort of rethink rewrite, change it up. I wasn't quite sure what to do next. And then I randomly met a pair of old friends who I know from the classic car scene at the ACE cafe in London.

I've not seen them for years and ended up sort of boring them about stories about long COVID. Because obviously that was the big news. Like I saw them is that I was now this sort of dried up husk of the human being. And one of them, it turned out, worked for a literary agent, and said - this idea you've got for a book sounds brilliant. Let me, you know, introduce you to the agency. They loved it, got on board. So I honed the pitch again for it, and they suggested that I should probably team up with a medical professional of some sort, because the book needed that. For credibility, as much as you could have something written by a journalist I think it's better when you've got the medical side of stuff covered too. 

So I thought about who would be, you know, on my sort of dream list of people to write it with. And Danny Altman was. Up there. And so I contacted Danny and Danny said, great. So my great surprise came on board. Then we revised the pitch again, wrote the first chapter, went out to a number of publishers, ended up with a bidding war, which was remarkable and showed again, just how many publishers saw the value in it as a project and ended up signing with Penguin. And now here we are. 

So the book is now written. It is in the process of being sort of final revisions to the text and fact checking and the rest of it. Um, and then it's gonna be type set and then we'll start to roll into publicity, you know, in a couple of months.

Jackie Baxter: And that's awesome. Yeah. Um, but I mean you're absolutely right. There's a lot of information out there, but it's quite hard to find. And we were saying earlier the sooner you can get a handle on what's going on and start to do some things to help yourself the better. And it's taken me what two and a half years now. And I feel like I know quite a lot of what's going on, but that's through doing a huge amount of research and interviewing and making a whole lot of mistakes as well. 

Gez Medinger: And I think whatever you do, there's always gonna be a period where if you're new to long COVID, you will just inevitably explore your limits in the wrong way.

A. Because the limits are completely capricious and will change from day to day, but B. Because they're much lower than you would possibly imagine until you've got your head around what long COVID is and long COVID will continue to punish you until you finally learn just how low those limits are. 

Yeah, you're right.

Jackie Baxter: I mean, there's people that I've seen and they're like, oh, should I do this? Can I do this? And I'm like, you don't want to say the reality in some ways, because the reality is awful, but at the same time, you can see them making the same mistakes that you made and you want them to learn from what you did.

But again, you know, we were saying right at the start weren't we, that we should have known from the ME people, but we didn't. So everyone has to go through that, don't they . 

Gez Medinger: Yeah. I mean, but I guess for us at the start, we didn't know that long COVID was gonna be quite so close to ME. And that's become clearer, just how closely related the two conditions are.

And again, there's obviously still a lot of arguments about, are they even the same thing? Is long COVID ME plus, or ME minus . You know, there are some people with ME, CFS who are very severely affected, as severely affected as people with long COVID. I mean, you know, that's a whole sort of podcast topic in itself really, 

Jackie Baxter: but there's absolutely a huge amount of crossover isn't there.

Yeah. Um, we, we can learn a lot from people who have been ill with ME for a long time, but you know, it's possible that they can benefit from, I dunno, I was gonna say publicity, I'm not sure that's quite the right word, but 

Gez Medinger: well, the way I look at it and what I'm very optimistic about is the point at which we crack the pathology of long COVID, I think we're gonna crack MECFS at the same time. And as soon as we've cracked pathology, then we can start working on treatments. And to some degree you can also do it the other way around. You can also try and, you know, investigate treatments. And then if you find something works, then you can start some research why it's working.

Right. So, I mean, I dunno which way it'll shake out yet, but you know, I'm optimistic that in two to three years we'll be in a much better place than we are now. 

Jackie Baxter: Yeah. I mean, absolutely. My greatest hope from all of this is that, that we can benefit each other. Yeah. And help some of the people who have been ill for so long.

I mean, you know, I'm moan about being ill for two and a half years, but you know, you think there are people that have been ill for 20, 30 years and it's just unimaginable, isn't it? 

Gez Medinger: Absolutely. Absolutely. 

Jackie Baxter: So, I mean, you know, through, through your YouTube channel, you've obviously spoken to a huge amount of experts and people - has this really helped you as well, speaking to all of. Because that's definitely what I 've found 

Gez Medinger: yeah, hugely. I mean, and some of them directly, so as I said with Tina Peers you know, that was direct advice where I was like, oh, look, I've got all these MCAS symptoms I can take antihistamines, I get better. And then, you know, speaking to Dr. Vensel in South Africa as well about Niacin.

So Niacin is a really interesting one, actually, cuz some people find it makes a massive difference to them really quickly. Other people, it makes very little. For me, I think it's a part of the puzzle. It's not the whole puzzle. Some of us are gonna be more NAD deficient than others. For me, it's a maintenance thing.

Whereas if I don't take it for two or three days, I notice that my energy envelope shrinks. So for me, it gives me, you know, an extra sort of 20% on my envelope if I take it and a little bit more cognitive clarity, but it doesn't cure me. Whereas some people find that it is almost the final missing part of their puzzle.

So like everything right. And the same thing with supplements. Like if you take, I dunno, 10,000 long haulers, you're gonna find someone who will basically claim that every single supplement there is - a different one has cured them. But the way I look at that is that long COVID exposes random deficiencies that you may already have or intolerances or anything like that.

And. You know, basically by taking a, a thousand supplements, you're sort of desperately trying to pin the tail on the donkey blindfold, hoping that you land the tail on the deficiency you've got without knowing what it was beforehand. So that's kind of the way I look at supplements. And then, you know, I guess the other thing as well is from speaking to people is just sort of increasing your own understanding about what's going on so that you don't question yourself as much, right? Because part of the problem in all of this is that the good day, bad day thing means that you start to then question your own good and bad days. And it's like, are the bad days in my head or are the good, and you don't because you don't ever know which , there's no solid ground to stand on, you start to Gaslight yourself as well. The more sort of fabric of real science, you can start to understand underneath it - it helps mitigate some of that. 

Jackie Baxter: Yes, it certainly does. And you get this bigger understanding of yourself sort of in your head. I mean, I, I keep thinking that I should get a big bit of paper and just draw myself a massive like spider diagram, because at the moment it's in my head and that's not good....

Gez Medinger: Yeah..I might have thrown it away. I drew a diagram of how I basically saw the pathology working. How does auto immunity relate to blood clots? How does metabolic stuff, you know, uh, mitochondrial malfunction relate to MCAS and all this sort of stuff. And because at the moment, it's just like, oh, there's all this stuff that's wrong with us. And there's all these things and it's just a big jumbled mess. 

And so I drew it into a sort of, a bit of a flow chart. So not much point showing it to you on a podcast. So the audience be like, well, that's great. Um, you have to just get the book and hopefully they're gonna reproduce my amazing diagram in the book.


Jackie Baxter: But yeah. It is. Yeah, you're right. I'm one of these people that likes answers. And I think that's both a good and a bad thing in some ways, but ,

Gez Medinger: I completely agree. 

Jackie Baxter: I want to know why something happens because then I can work at what I can do about it, you know? So my breathing isn't very good. Right? Well, I can work on that. You know, that's something that I can practically do that will help. It's not, as you say the whole story. It's part of the puzzle, but that for me was a huge part of my puzzle. But yeah, you know, I think sometimes as well, the search for answers can almost be counterproductive cuz sometimes just have to accept that things are. 

Gez Medinger: Again, this is one of the, a related conundrum catch 22 situation in long COVID is the one where we have to forget that we're ill because we don't want to obsess over our symptoms. And we don't want to continually put ourselves into a automatic state, which is basically anxious or high alert, cuz that obviously creates the sympathetic overdrive. But at the same time, in order to not PEM ourselves, we have to be incredibly aware of the little symptoms that tell us we're just about to overdo it because we learn those over time too. Right. So I know when I'm about to overdo it, cause I start to get a little bit dizzy or I start to get a bit of frontal headache and I'm like, okay, I need to go and lie down and breathe right now.

So how do you manage thathyper vigilance, which you don't want, but need, you know, so again, it's one of these sort of dichotomies of just impossibility that we're faced with. And I don't know what the answer to that is beyond when you have a good day, try to let yourself off the hook a bit from that. I guess my advice for that would be - do your 50% of what you think you can do. And then don't think about being ill beyond just having a smaller list. That would be the way I would try and deal with it as opposed to on the good day being - oh, cause you, we do have to create some space here of normality still, if we possibly can - depending on the severity of your long cOVID, because for some people who are so severe all the time - yeah. That's not even possible either. So I get that too. 

Jackie Baxter: Yeah, exactly. It's, it's that idea of finding some joy in your life? Isn't it? However, small. 

Gez Medinger: Yeah, hugely 

Jackie Baxter: the happy list of, you know, you have a nice smelling candle and that will make you have a slightly better day than you would otherwise.

Gez Medinger: Or for example, the - I queried myself, so I saw on Twitter, this morning, it was just something - this is how techno music is made. And it was three guys sitting in the sitting room - one on a couch and a couple of other chairs. And they were basically live recording a techno track with a Hoover, a kitchen spray, and like banging on a bucket upside down and the guy had some keyboards on his feet.

And I was like, well, are the people who followed me, good interested this. I'm like, no, this is fun. This is 53 seconds of joy and levity that just takes you out of your head 53 seconds. So yes, I'll share it, but it's weird, right? That I, I queried that in my head of, is that something that is worth sharing?

I'm like, no, that 53 seconds of joy is invaluable. Right? Um, it's one of those things where whatever that you can do that takes you out of that space for a moment is worth doing, 

Jackie Baxter: oh, totally. But that's quite interesting, isn't it? It's that sense of like responsibility almost, you know, every time I retweet something, I have to think, well, I need to check that out to make sure that it's not bollocks before I retweet it, obviously.

Gez Medinger: Yeah. 

Jackie Baxter: And it's, it's the sort of, um, sort of double edge sword almost 

Gez Medinger: well, the other thing is, where it gets hard as well is trolling. So trolling is hard and there's one sort of motto I've tried to remember. So weirdly my model for how to deal with trolls is, um, James blunt. He is incredibly classy at dealing with trolls, and I've tried to just keep that as my motto, even when they cut through, because occasionally - you know, as soon as you put your head above the parapit, people are gonna throw stuff at you and yeah. So I've tried to always try and stay classy, but it's hard, especially when you're already on a bit more of an emotional knife edge yourself, and someone's attacking you for, you know, you've basically gone out of your way to do a load of work when you are ill to help people and then people attack you for it. And instinctively, you wanna go, well, fuck you. But I sort of, 

Jackie Baxter: it doesn't make you feel good. Does it? 

Gez Medinger: well, yeah, there's a moment in which it does, but you have to remember as well that on that public platform, it doesn't play well.

So, um, that can be a challenge with long COVID as well. Handling that side of the responsibility as well. Yeah. 

Jackie Baxter: Cuz I think, you know, we are so much more sort of sensitive to any sort of stress aren't we? 

Gez Medinger: Yeah. So for here's an example, actually, of the ills of social media, if you call it that way or the challenges of social media when you have long COVID because again, like it's a huge place of support and long COVID Twitter - I don't use long COVID Facebook that much . I mean, I post my films in there, but I don't tend to spend much time on Facebook, but I do spend a bit of time on Twitter and generally it's a very supportive place and it's an incredibly good community, but there was some kickback that I had from a film I made recently with Dr. Sally Riggs. There is a small sort of faction of the ME community who very vigorously defend a certain space. And I know people in the long COVID community who have certain platforms who have had to block a number of these people, because the vigorousness with which they protect their space and advocate for their position is intense. 

I'm choosing my words carefully here because I understand, I really do understand. And the thing is there is, there is a whole gray area in the subject. If you've seen the film I'm talking about, you might know what I'm talking about, which is around physiological stress, the autonomic system, prior trauma, you know, all of this stuff.

And there's a gray area in here, right. Which is, you know, one end you've got, you know, I don't know - pulmonary embolism, which is a very physical, easy thing to show. That's a physical thing that creates symptoms at the very other end you've got someone who's, I dunno, a hypochondriac whose illness is in their head or something like that.

And then somewhere in the middle, there is a line somewhere in the middle that everyone draws slightly differently, according to, well, what is this interplay between the mind and the body, and everybody draws the line on where they see that interplay between mind and body somewhere differently. And some people who exist at one end of that spectrum can defend that position. Very vigorously. 

Anyway, point being of all of this is that I was getting, I mean, you know, triggered is the word, I guess, but I was. It was physically making me feel worse. It was physically making my long Covid worse to try and deal with this. So I just took like four days off Twitter and I just deleted the app off my phone.

And it was the healthiest thing for me to do. 

But that's the perfect example in itself of how the very situation I was talking about when I was getting that level of heat was actually making my symptoms worse because I was automatically stressed. And then I was making me more disautonomic, which for me is kind of proof in the pudding of what I was trying to say, but anyway, complex topic needs to be discussed sensitively.

And I'm hoping that as time goes on, we'll start to get a better, you know, a handle on the science will evolve around some of those areas, which where at the moment, it's still a bit gray and hopefully will start to get a bit more clarity on some of that interplay between the autonomic system and physiological stress. Whether emotional or physical or whatever. Yeah. 

Jackie Baxter: Yeah, absolutely. And I think, I mean, I guess the difficulty with the autonomic dysfunction sort of side of it, which I think, you know, for me is, is a huge part of my symptoms is that you can't see it. And that's, I think what makes it very, very difficult for us to understand and for other people to understand as well, when you're trying to explain it to people that, you know, you can't really get stressed, otherwise you end up iller.

I guess, you know, it is hard to understand unless you're actually physically experiencing it. Isn't it, which I guess is why someone like yourself, you know, you're sort of the genuine voice of lived experience. You are literally living this 

Gez Medinger: well, although it was funny, there was one comment on YouTube recently, which I sort of responded to and then I posted on Twitter, which was someone saying, I wish someone who actually had the real long COVID made these films, not the half assed version that Gez has got. And then I responded saying something like, how do you know what version of Long Covid I've got anyway? Like how do you know, how ill I am? And he, and then he doubled down and I found that interesting, right?

Because in all of that, it raises the question of. A how invisible the illness is. And B that, that whole question of you seem fine. right. And what people don't realize is that they don't see you 24 hours of the day. So people might listen to this podcast and go, well, Gez seems fine. In an hour of talking, he only forgot James Blunt's surname, right?

So what's his level of impairment. What they don't see is that I spent the hour before this resting on the sofa with my eyes shut, doing breathing exercises. And as soon as we've finished, I'll have to go back and do the same thing, cuz I can't go from this podcast, this conversation just an hour's conversation. I can't go from that into doing any work on the computer because my brain will just be absolute cheese. And I know myself, but even just having this conversation inthis form will have put me into sympathetic overdrive and I need to bring myself back again, you know, and if I don't, I will crash. And so, you know, that's the invisible side of the illness is that people only see you when you are - you're burning your nitrous when you're around other people to try and just keep up with normal life and they don't see you just crash into the barriers at the end of the track, as soon as they walk away. You know, it's hard. 

Jackie Baxter: You're right. And, and, you know, I think even other people with long COVID can fall into that trap of saying, oh, well, that person, you know, that they're not as I as me because they look fine right now.

But yeah. You know it's easy to forget, isn't it? That people only see you when you're doing okay. 

Gez Medinger: Yeah. And, and equally, I only record my films on the very good days. And there are some weeks where there might only be one day where I'm feeling well enough to record, you know, and yes, I probably do look okay. At the moment, especially compared to how wretched I looked a year or two ago in the winter, but I've got a bit of sun on me. I try and go outside, cause I know I respond well to daylight anyway. Um, and it's the one day where I'm actually less wrecked, right? People wouldn't be saying, oh, you look well, if I recorded on any of the other six days of the week. Oh my God, mate, you look terrible. Um, so again, there's, there's that degree of filtering as well that goes on. 

Jackie Baxter: Yes, absolutely. Yeah. You know, and if you're not feeling up to doing it, then you know, it will wait until the following week. 

Gez Medinger: Exactly. And I've even got to the point now where I try and write three or four scripts in advance so that I can then record them all in one hit.

And that means then that I don't need to wait days to be well enough to do them again. I can just do 'em on one good day and get as much done as I can, which is why you'll notice in the recent films I'm wearing the same shirt, like four films in a row. It's not because I just only put that shirt on it's because it all got recorded together, 

Jackie Baxter: but I guess then you fall into the trap of potentially overdoing it on that one good day, because you want to make the best use of it.

It's it's so difficult. Isn't it? 

Gez Medinger: Well, that's it. That's part of the thing. Although I have now finally worked out a way of recording that is less taxing energetically weirdly, for some reason. I hadn't got an auto-cue system that worked early on. So I was having to - how challenging is this? When you've got long brain fog, look at a paragraph of complex technical stuff, try and remember what it was and then deliver it to camera.

And honestly, sometimes it would take me 10, 12, 15 takes to try and get stuff out. And it's so exhausting. It would take me like two hours of this stuff to get through recording a film. So thank God I've now got auto cue, cuz it takes me basically as long as the film is to record it. So it's like eight, 10 minutes and that's fine.

Jackie Baxter: yeah. Did you ever consider podcasting? 

Gez Medinger: Maybe should have done. Yeah

Jackie Baxter: Do you have any, a sort of a, a list of the things that you found the least useful? I mean, again, it's gonna differ person to person, isn't it? 

Gez Medinger: Ah-huh what is the least useful advice in long covid. I think, well, obviously it's the people who say, yeah, you just need to go for a walk. You just need to start exercising again. You'll be fine. That's obviously not just not useful. That's harmful, but the least useful stuff is generally kind of the people saying, you need to try fish oil, you need to try vitamin X, you need to try this extract of this. You know, what's really gonna sort you out. It's that. I mean, everybody has experienced that. And my experience with supplements is that the only one that actually makes any difference on the supplements side is the Niacin vitamin B3. I do still take like vitamin C vitamin D, because why wouldn't you, and I take probiotics and the probiotics do help.

Um, but otherwise I've just kind of got to the point where I can't tell the difference any of it. There's too many other factors that definitely do make a difference. And I can't tell for me something that makes a difference on the supplement side of stuff. But again, if someone knows they've got a tendency towards a deficiency, then that's always worth dealing with 

what else isn't very useful? So what was arguably not useful was the tilt test I had. So I spoke about it in a film recently with Dr. Boon lim. If you're interested in tilt test, or interested in disautonomia it was actually fascinating stuff. The reason why I say it wasn't useful is whats it told me that I didn't already know?

And it crashed me for like six weeks so was it worth that crash? And the answer is, I don't think so. I mean, I got a film out of it in the end, like a few months, six months later, and I hope that other people can learn from that, you know, and actually comparing my tilt to other peoples as instructive to see what the difference between pots is and what pots with disautonomia is.

IE just, you know, basic disautonomia versus disautonomia plus pots, you know, and you can see the difference on tilts. And it's quite nice to have that visually represented, but beyond that, it hasn't helped me that much. 

Jackie Baxter: Yeah. It's like, it gives you that diagnosis, doesn't it? But you knew that already. Didn't you really?

Gez Medinger: Yeah, I did. I knew it already. Yeah. I guess in a sense, it told me that it wasn't in my. Again, because I was questioning, am I really dis automatic? Yes, I clearly am because I was about to pass out after just being raised 60 degrees for like eight minutes, whatever it was before I crashed. So I guess it was validation, but.

Did I need the validation? I dunno. I, well, I'll just swap the validation for six weeks of not being in a crash for sure. 

Jackie Baxter: yeah, that's true. Cuz that, yeah, that, that's all it gave you really. 

Gez Medinger: Yeah, exactly. Yeah. 

Jackie Baxter: But yeah, no, that's really interesting actually. I mean, I I've never gone for anything like that, but again, heard plenty of people's talk about that they have. again, I think it was Dr. Boon lim, he basically said you can do your own tilt test, you know? Does it get worse when you stand up? Yes, it does. Therefore, that's my answer. Yeah. So that's, that's possibly enough. 

Gez Medinger: Yeah. Evidence. Yeah. To tell you what you need to know. And again, you can do your own sit to stand quite easily, which is basically just sit down or lie down, take your heart rates, stand up and then keep a measure of your heart rate every minute for 10 minutes.

Does it jump by more than 30 BPM? If it does probably got poTS. It's quite simple. I mean, that's not super like technical and yes, there's a better way diagnosing than that, but that's a pretty good indication. 

Jackie Baxter: Exactly. Yeah. It's certainly enough for you to then go - right. Okay. Well now there are things that I can try and do because I know I've got a name. I've got a label. Yeah. I mean, yeah, certainly what I found at the start was that I didn't know what was going on, so I didn't know what I could do. And all I wanted was someone to say, you could try this and it will help, but I didn't have that for so long. And then when I finally did, it was like, Oh, my goodness.

Now I have something that I can work on. 

Gez Medinger: Yeah. And I'm, and I'm sure everybody listening to this is already on board, but don't underestimate the conservative measures. We all want a magic pill. So we all want the hard drug that's gonna fix it, but don't underestimate the difference that conservative measures like breath work, salt intake, fluid intake, compression, you know, they can all make a huge difference.

And there's a reason why people like Dr Lim suggest those first, because they can make a huge difference by themselves and they take discipline sometimes, and we don't want to necessarily have to do discipline. And I'm not as disciplined as I should be in terms of going and doing my breathing. You know, there's a bunch of stuff I should and could do it better, but I'm a bit lazy about it.

And I'm to remind myself to be disciplined because then I will benefit. But it's hard, right? 

Jackie Baxter: Yes. It is hard because we wanna live our lives. Yeah. Don't we, and you think, well, I could see a friend for an hour or I could go and do my breathing exercises. And, you know, spending time with your friend is gonna be more fun 

Gez Medinger: and I get bored doing the breathing exercises.

It's hard not to be, to get bored. Right. And if I I'm either too wrecked to do it and I need to go and lie down and I'm actually not feeling well enough to even have the energy to do the breathing or I'm actually feeling okay and I need to do the breathing. And then I get bored. So it's like, ugh

Jackie Baxter: you can't win. Can you yeah.

I mean, I definitely find scheduling it helped. But then, you know, the more things you have scheduled, the more pressure you have and the more stress which can actually backfire sometimes. So it's uh, yeah, you can't win you really can't 

great. Well, thank you so much for joining me today. It was really fun and there's loads of really useful stuff there too.

So thank you so much for chatting to me and well, thank you for all you do as well. 

Gez Medinger: It's been an absolute pleasure.

(Cont.) 46 - Gez Medinger - Patient Advocate, Researcher & Author