In this episode, Gez Medinger discusses the complexities of Long COVID, the differences in vaccine responses, and the need for a more holistic medical approach. He also highlights his research, shared on YouTube and in his book, “The Long COVID Handbook,” and the need for better evidence-based medical responses.
Guest – Gez Medinger
Note: The podcast has no bias. All conflicts of interest are highlighted with individual guests.
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Podcast Overview:
Long COVID Research: Gez Medinger shares his findings on Long COVID symptoms, vaccine responses, and the stability of the first-wave group over time.
Vaccine Response Variability: Differences in how individuals respond to Pfizer vs. AstraZeneca vaccines and the impact of first and second doses.
Data Sharing: Gez discusses publishing his research on YouTube, in his book, and on his website, “The Long COVID Handbook.”
Challenges in Medical Response: The need for rapid, evidence-based approaches to new diseases and how the medical community can better support Long Haulers.
Holistic Medical Approach: The importance of treating multi-system conditions like Long COVID with a more integrated, patient-centered approach.
Future Medical Implications: Potential changes in the medical profession to accommodate complex, multi-system diseases and the role of political will in driving research and treatment advancements.
Patient Advice: Tips for Long Haulers on managing symptoms, understanding pacing, and distinguishing between dysautonomic responses and post-exertional malaise.
DISCLAIMER: The information in this podcast is provided for informational purposes only. You should not use any information discussed in this podcast and related materials to make medical or healthcare related decisions. Always consult a your physician or other qualified health care provider with regards to diagnosing managing your medical condition. Any medications or treatments, including any discussed in this podcast, should be initiated and managed by a qualified health care professional.
Podcast Transcript:
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EPISODE 5 – GEZ’s PERSONAL LONG COVID STORY & ADVOCACY – with Gez Medinger
[00:00:00] Funmi Okunola: The information in this podcast is provided for informational purposes only. You should not use any information discussed in this podcast and related materials to make medical or healthcare related decisions. Always consult your physician or other qualified healthcare provider with regards to diagnosing and managing your medical condition. Any medications or treatments, including any discussed in this podcast should be initiated and managed by a qualified healthcare professional.
Funmi Okunola: Welcome to “Long COVID – The Answers”. Today’s Episode Five is entitled “Personal Long COVID Story and Advocacy”. I’d like to introduce Gez Medinger, a film producer, marathon runner, and now a well known and much respected scientific journalist and Long COVID advocate. Gez himself is a sufferer, and I’ve invited him to be interviewed today so that we can learn about his experiences and personal journey with this disease.
Gez has written a great book called “The Long COVID Handbook”, which he co- wrote with Professor Danny Altmann, who we interviewed in Episodes One and Two. I feel this book is essential reading. If you want to have any understanding about Long COVID, it’s a book which helped me make sense of the disease, and one that I recommend to patients who are Long COVID survivors. I must mention that I get no money for endorsing the book and have no financial links whatsoever to Gez or Danny Altmann. Welcome Gez.
Gez Medinger: Um, thank you very much for having me. It’s very exciting to be here.
Funmi Okunola: [00:01:00] Great. Gez, do you have any conflicts of interest to declare?
Gez Medinger: I do not.
Funmi Okunola: Great. Thank you. Gez, could you tell us in your own words about your life before Long COVID, and your experiences after you developed COVID-19?
Gez Medinger: I guess that question is how long have you got, right? I mean my story is relatively typical, certainly in terms of what we see in the community, and that is a very busy life. I was flying around the world as a freelancer, director and producer in the film business, very keen on my sports, and I was a marathon runner. I was just reaching peak fitness after my fourth marathon when I caught COVID, played a lot of football, did a lot of cycling, loved skiing, and yeah, lived a life at breakneck speed, and then got COVID like everyone else in March 2020 in London. Things got nasty pretty quick, not in the sense that I ended up in hospital with a severe acute infection. My acute infection was much like anyone else’s, an unpleasant sort of [00:02:00] seven to 10 days. But actually, the Long COVID that came after was much, much worse. We’re now almost four years down the line from that, and I still haven’t been able to do a single day’s work in my old job. I simply don’t have the health to support that, and I haven’t done any exercise. I haven’t put on my running shoes in four years either. So huge, huge, dramatic life change.
Funmi Okunola: Wow. I’ve heard Long COVID called the “Corona Coaster”. How do you cope with the daily challenges posed by this virus?
Gez Medinger: I think coping with Long COVID is one of the hardest sort of challenges that most of us have probably faced in our lives because it undermines you in ways that very few other things can do because it’s not just a physical illness.
It’s the impact it has on your faculties – your ability to think, your ability to process information, your ability to function on even a basic level can be [00:03:00] really severe, and on top of that there’s a very high correlation with pretty severe depression and anxiety. This may well be connected to not just the inflammation associated with the condition, but also the disruption on serotonin production and use in the body when you find the ground that you always thought was stable pulled away from underneath you, and maybe your normal coping mechanisms when life has been hard in the past. For me, for example, it was I’d go for a hard run, or I’d really throw myself into my work and be incredibly productive.
All those old sorts of coping mechanisms are no longer appropriate. They don’t work, and suddenly you find yourself in a position where you have this invisible illness, which is eroding your own sense of self, your identity, your ability to do even simple things like make a cup of tea or even drink a cup of tea because you may no longer be able to tolerate it anymore.
This is the thing, right? Just in terms of a Corona Coaster and understanding what the dips are on this Corona [00:04:00] Coaster. I broke my pelvis in 2020, which is quite a severe injury, and people immediately have a tangible sense of what it means when you break a pelvis, right? It’s extremely painful, you’re in hospital for a week, etc. I was saying to people at the time, I’d rather break my pelvis every six weeks – I’d let it heal and then smash it to bits again than have Long COVID, because breaking my pelvis doesn’t remove my ability to talk to my family. It doesn’t remove my ability to read, my ability to drink a coffee, my ability to think. Long COVID strips all of these things away from you in a way that very few other things do, and that’s one of the things that makes navigating the Corona Coaster so hard.
Funmi Okunola: Well, that was so eloquently put. You were an active, successful individual, as you just said, prior to Long COVID. How did you find the strength to turn your life around?
Gez Medinger: Have I turned my life around? I’d almost question the question there. I’m not ready to go back to work in my old job. [00:05:00] I’m not ready to go back to exercise. I’m not ready to socialize. I’ve got a friend’s birthday party on Friday evening. I probably won’t go. I’d love to go, but the fact is I’m not capable of the energy to socialize at the end of the day.
By seven o’clock, I’m toast. So, the idea of being around his place till 2 a.m. – that’s a dream world, right? These are the things that we used to do in our life. So, have I turned my life around? I’ve got to a place where I can function to a degree, and I’ve got to a place where I can manage. I’ve got used to riding the Corona Coaster for four years, and you get to not panic as much when you hit the troughs.
But it is really, really hard. I could speak for an hour just about what does pacing mean and how do you do that effectively, and how do you try and identify how many of your symptoms are related to exerting yourself too much – how many of them might be related to Dysautonomia? Which is where you do something in the moments that there’s so many different components to this. But fundamentally, I guess, [00:06:00] I’ve just tried to educate myself as much as possible about what’s going on, so that it doesn’t feel like you’re battling the unknown.
I think that’s one of the hardest things with Long COVID because here’s a condition that has no diagnosis. I mean in the sense that there’s no diagnostic test. You can’t take a test, and it says, oh yes, look, you’ve got Long COVID. Uh, there is no treatment for it so that you can go to your doctor, or your GP and they will give you something for it.
There’s no prognosis either. We look at people who had SARS-1 back in 2002 when we wrote the book, because Danny got back in touch with the Professor who ran a study from the first variants of SARS, and many of those people are a long, long way from getting their lives back.
This is the unknown that we’re staring down into the future, and I think that’s, yeah, that’s a really, really hard thing to deal with. So, I think trying to educate myself to remove as many of the unknowns as possible around the condition has helped give me enough strength to build a life that is semi-functional. [00:07:00]
Funmi Okunola: Well, to us in the audience, it’s really functional and beneficial. Thank you. What’s the biggest impact this virus has had on your life?
Gez Medinger: That’s a really good question. It’s changed everything, right? So, all the things that you used to value have suddenly changed – you can’t do them anymore. They don’t have that same value anymore because I haven’t done them in four years. So do I put work at the top of that tree and say, I can’t do my old job – that’s gone away. The biggest impact in my career as a film director has gone away.
Is it dead or is it just in limbo? I don’t know. Is it my sort of relationship with self and identity in terms of how I used to see myself as an active, healthy, fit person who would get to the escalator on a tube and run up the left-hand side two steps at a time? You know now I’m the person who stands on the right – [00:08:00] that’s if I’m even able to take the tube, and now I try and avoid it because there’s too much walking at either end. It’s really hard to say what is the single biggest impact because just about every single part of my life from my relationship with tea – I used to love drinking tea – six cups a day, I can only just about tolerate one now, and even that took me two or three years before I could get to the point where I could tolerate a cup of tea, right?
So even little things, the small joys, it steals from you too, and I think that’s one of the hardest things. You know what, if I’m, if I’m going to be forced, I’m going to say it’s not the big stuff, identity, like work, like relationships with friends and family and sports and all the rest of it. It’s the little moments of joy that make up your day that you suddenly can’t do anymore, and you have to redefine and look for joy elsewhere, and I think that’s almost the most fundamental impact that Long COVID’s had on me.
Funmi Okunola: Do you have a carer? And if so, how do you think he or she [00:09:00] could be better supported?
Gez Medinger: I don’t have a carer, but I think this idea of carers is really important for people suffering with Long COVID because there’s a lot of people who have a huge amount of strain put on their relationships with their partners, spouses, children, parents, when they start developing Long COVID, because it’s not a condition that’s widely understood by the medical community, let alone the wider public, and it’s a relatively invisible condition in most cases, and it’s very fluctuating and very variable, which means that just because someone can do something one day doesn’t mean they are able to do it the next day.
For people in that caring role who aren’t familiar with the relapsing and remitting nature of the condition, or the fluctuating nature of a chronic condition, this can be really hard in terms of what and [00:10:00] where people do need help, where they do need care, and what they’re trying to figure out with the boundaries of activity in an empathetic way.
I did some patient-led research looking at the impact of Long COVID on people’s relationships, and it was huge, absolutely huge in terms of their primary sort of romantic relationships. It’s destroyed many, many, many relationships. I don’t have the figures to date in terms of being able to pull up what percentage say it affected them negatively.
But it was shocking, really, the impact on people’s relationships. I think if there’s one thing that I would sort of like to achieve, and I’ve been trying to achieve through all of this, it’s raising the awareness of Long COVID so that people, just for starters, know it exists, right? Because on one of my very rare social outings, I went around to a friend’s house for dinner the other night. They’d brought a friend over as well. So, it’s just the four of us, and I said, “I’ve got Long COVID”, and they said, “Oh, that’s real, is it?” We’re four years in [00:11:00] now, and there’s still this question mark over it, and it’s very, very, very real. I guess you probably know that if you’re listening to this podcast.
You wouldn’t listen to it unless you thought so. But this is emblematic of the wider community, and I think just trying to increase the awareness of its existence, just how severe it is, and just how debilitating it is, and just how great the impact is on people’s lives is incredibly important to know so the more that sort of knowledge and associated empathy that comes with it can get out there I think the more it’ll help people who are in caring roles to understand what the people – those long haulers they’re caring for, are going through.
Funmi Okunola: Thank you. Yes, and the whole point of me putting this podcast and project together is because I spoke to so many colleagues who didn’t believe in Long COVID, and if they did just didn’t know what it was or how to manage it. So, you’re really helping with that. What treatments, if any, or approach has [00:12:00] really worked for you?
Gez Medinger: So, I have a few things that I take which are more like props to just prop up a basic level of functioning. Just about all of my allergies went insane, in the early phases of Long COVID.
I discovered that antihistamines were really, really helpful for me in terms of food intolerances that never existed previously. Skin rashes. All sorts of mad stuff. So, antihistamines have really helped me. But again, they are simply mitigating the worst edges of the condition. I’ve been taking an SSRI, it’s citalopram, since the start, and that, again, mitigates some of the worst stuff and just levels it out. Levels out some of those sorts of troughs.
Again, we’ve got some evidence recently showing that serotonin levels are significantly affected in Long COVID, and SSRIs might be a sensible course of treatment for some people. It certainly helped me. I take a sort of a low maintenance dose of aspirin, which again, I seem to think helps. Beyond that like every Long [00:13:00] Hauler, I’ve got a cupboard full of supplements and some of them, like my pill count for supplements in the morning – it’s like, oh my God, it’s four glasses of water worth in terms of getting them all down.
The ones that make the biggest difference, I think for me personally, are probably the B Vitamins. So B3 and B1. I noticed a definite difference if I run out of those and don’t take them. But otherwise, it’s in terms of treatments, it’s yeah, it’s just trying to mitigate, mitigate some of the worst sort of parts of the condition.
Hyperbaric oxygen has helped me in the past, but it’s a very temporary boost. It doesn’t seem to resolve the core issue. I’ve got plenty of evidence now that there are all sorts of oxygen transfer issues and associated metabolic consequences connected to Long COVID, and it would make sense that pushing some extra oxygen into the body would make me feel better, and it does. I come out of those chambers feeling almost normal for a while, but it doesn’t seem to stick, unfortunately.
We need to try and get to the roots of [00:14:00] the pathologies, not just a single pathology. There are many interconnected ones, and hopefully then we can start to work out which treatments will be most helpful for which people in which phenotype of Long COVID.
There is a whole separate question there because when we’re talking about treatment, I think we also have to say Long COVID isn’t the same for everybody. We’ve got over 200 recognized symptoms, and I think one of our next big jobs is to try and understand what’s causing these symptoms, between why is Bob getting symptoms one, two, and three and why is Sally getting symptoms four, five, and six? Do they belong to different groups which may have slightly different pathologists going on, which would respond better to different treatments? So, trying to work out what the phenotypes of Long COVID are, and what the pathology pathologies are that are driving those, I think is a really, really important next step. If we start doing treatment trials without understanding the phenotypes, then we might get negative results in those treatments simply because we’re treating the autoimmunity people with antivirals and the viral persistence people with immune modulators, [00:15:00] and we might not get the results that we would do if we’d actually worked out what was going on.
So, yeah, treatment’s a huge, huge, huge, subject, and it was the hardest subject to write in the book with Danny from his position as a Professor of Immunology, and relative to what the patients want and expect, which is basically the patients’ community out there are going out and trying everything.
Because when you’ve got Long COVID it almost feels like there’s nothing to lose. I don’t care what the side effects are. I don’t care what the risks are because my life is unbearable. So, people are going out and doing all sorts of mad stuff. How do I report on that in the book whilst also not – that was a challenge for me and Danny, but we got through it. It’s a really important subject going forward clearly, but I think it’s really important we also go about it in the right way.
Funmi Okunola: Yes. There might never be a cure for this disease in our lifetimes. How do you deal with that possibility?
Gez Medinger: I am not waiting for a cure, personally, and I think once you get to a certain point down [00:16:00] the line, I think you, I’m going to quote the Shawshank Redemption, “get busy living or get busy dyin”, right? and I figured that you can either sit around and wait for a cure to turn up, or for what it’s worth, I don’t think we will get a “cure”.
I think we will get effective treatments for certain people with certain phenotypes who will respond particularly well to some treatments, and I think certain ones won’t. But yeah, I think I’m trying to build my life as best I can around the limitations of my condition at the moment.
There is some improvement over time, but it’s very, very slow. I haven’t given up on trying things, but I’m not waiting on that to be delivered. So, I think this idea of a cure and a magic bullet is one that’s in all of our mental health interests to not be waiting for it, because I think that’s a path to a letdown.
You know what I mean, you could get 10 years down the [00:17:00] line and go, “Oh, look, it’s not possible”. So, getting busy living according to the limits of the condition because I appreciate that even saying that is potentially a triggering thing for some people who don’t feel like living.
Long COVID can be so severe if you’re bed bound, and you’re in a dark room, and any stimulation is so difficult to deal with that you’ve got earmuffs on, and you’ve got eye masks on and you’re in a dark room and you can’t even speak to anybody, and you’ve got maybe one bathroom trip a day, that to say “get busy living”, I get if you’re in that it doesn’t apply to people who are that severe.
I can’t even imagine what it must be like for them. I just want to send them all of my respect and yeah, empathy for, for going through what is just an impossible, impossible condition. But for the rest of us, who have some degree of function. There’s a huge emotional journey as well.
I think in Long COVID you go to all of the [00:18:00] five stages of grief for your old life. There is all of the denial, the anger, the bitterness and all of it, and I think there comes a point, and maybe I’ve been sort of approaching this point for a while now, where you hopefully get to a point where you can say, “Hey, I haven’t given up hope of getting better, but this is where I am now, and I would rather enjoy where I am now, as far as I can, rather than beat myself up for not being where I want to be”.
It’s an ongoing, ongoing challenge. It requires a huge amount of mental and emotional dexterity. But I think it’s also very important to not get caught in the wrong types of, um, I mean, there’s a whole other subject about nervous system drivers and the body being stuck in fight or flight.
If you get caught in a mental loop like that, where you are obsessing about the things you can’t do, it’s not very good for getting your body into parasympathetic rest, digest and heal. So, [00:19:00] that’s another huge subject. But yeah, that’s sort of where I’ve come out on it.
Funmi Okunola: That’s a great attitude. Tell us about your own patient-led research.
Gez Medinger: So quite early on, and I say quite early on, I mean, sort of April, May 2020, this is well before there was a term Long COVID, it was just a bunch of people who were really not right several months after an infection. I put a film up on YouTube, and then I put another one, and then another one, and these films were basically looking at the science that we knew about post viral conditions, and what we knew about SARS-CoV-2.
It really did seem like there was a huge wave of people affected with what was going to come to be known as Long COVID, and we all had these huge questions about what the hell was going on because the medical community had no answers for us. Western medicine is evidence-based medicine, and with anything new there wasn’t any time to build the [00:20:00] evidence base. So, there were no answers anywhere, and I found myself in the position where I had an audience that grew really quickly, and I could ask questions that I had about the condition, and that I thought everybody else would have, or that I had realized through the support groups, questions that other people would have.
I could put them out to the community and get an N of 2,000 in a couple of days. That was incredibly powerful in terms of trying to answer some of the questions that we had. Even just characterizing us as a group, what’s the demographic? what preexisting conditions do we have?
Then going further down the line, how do we react to certain supplements? Or do we have a history of Atopy? Is that correlated? What can this tell us about the pathology, and then how do we respond to vaccines? That’s another really important thing. So, when the vaccines came along, it was a big choice for long haulers to get vaccinated or not, because it wasn’t as straightforward as it was for people who didn’t have a condition that would be triggered by [00:21:00] anything that was designed to blow up the immune system.
So, being able to collect data on how long haul is responding to the vaccine was also going to be useful. So yeah, the patient-led research was, I think really, really valuable, especially in that first year in terms of giving us a really fast look at seeing what characterizes the group, what we were struggling with, what the hardest things were, and helping everybody get a little bit more understanding about the condition that wasn’t really available anywhere else.
Funmi Okunola: So, what exactly did you do? Was it you just compiled what you felt was the, you took a subject matter, and then compiled some questions and put it out?
Gez Medinger: So, I did them all through Google polls generally, Google forms, and I would try and devise a study (I think I did 12 separately), maybe it seems a bit grand calling it a study, but collections of survey questions. I could characterize each group, and then I could basically dig into certain questions that we had. If it was, [00:22:00] for example, blood type, I looked at blood type – is blood type correlated? Turns out not really. Is diabetes correlated? Eh, not really. Is rheumatoid arthritis?
Yes, very much so. Prior Post Viral Fatigue? Very much so. Atopy? Absolutely. Why are we seeing twice as many women as men? What does that tell us? Why is there this grouping between 30 and 50 in terms of age? So, there’s all of this sort of stuff that was really interesting. Then things like, okay, when it looks like we’ve got a theory about what might be causing some of the symptoms, which was this idea of NAD plus deficiency. Logically supplementation of Vitamin B3 could potentially help with that.
I would collect a bunch of data, ask about certain interventions that people had made to see if they made a positive difference. Generally speaking, supplements did not. Histamine diets, however, were the highest correlation for something that people had tried and immediately made a strong difference.
That absolutely corresponded with my own [00:23:00] personal experience. If I eat a tomato, within 20 minutes my heart rate’s gone mad, and I’ve broken out in a rash. I’ve always eaten tomatoes fine before, and then again in the scientific literature like histamine intolerance is not really very well covered or even believed in. You go and speak to your GP about it, and I go pff! But it genuinely seems to be a thing when it comes to Long COVID, and then yeah Vitamin B3 also seems to beyond the… I can’t remember exactly what the statistical significance was.
It was statistically significant, but at the end, was it the end, the number I’m thinking of? Anyway, 0.006 or something. T number, N number, sorry, you’ll have – there’s a bit of brain fog for you there. You put me on the spot. P number, I think P number, there we go. P number, thank you. Yeah, so I think a lot of that, and especially when it came to vaccination – which vaccines were having what kind of responses.
So, what we saw was that people were responding differently to Pfizer than they were to AstraZeneca and differently on the first dose to the second dose. Again, I think [00:24:00] that informed people’s choices about whether to get vaccinated again because the protection is great, but if it’s going to crash your symptoms and make your baseline much worse, that might not be something you want to do.
Yeah, there was a lot in there. It got to the point after maybe I was doing a follow- up study every six months on the first-wavers to see how the group was changing, and see what symptoms are improving, and what symptoms are getting worse. It looked like between 18 months, two years and two and a half years that the first- wave group was fairly static actually, and things weren’t changing that much.
I haven’t done another follow up after two and a half years. But my sense from having been around the communities is that I think the first-wave group are pretty stable, going to still look pretty similar at four years as they did at two and a half. About half of those first waivers, people who were sick in the first year, seem to have recovered, but the other half, like me, haven’t.
Funmi Okunola: Where do you publish your results?
Gez Medinger: They’re in the book. But before that, they were all on YouTube. So, I [00:25:00] was basically posting the surveys themselves out on social media, and then I would analyze the results, break them down and put them into a video. I’d put that up on YouTube because that was the easiest way for Long aulers to actually digest and consume the information.
But then it’s also in the book, and I do also have a website which has all the raw data on it. If anybody wants to go and look at it, it’s The Long COVID Handbook. com. Yeah, so if you want to get and dig into the data on any of the subjects you can do that.
Funmi Okunola: Yeah, and we’ll have all the links in the show notes.
This was a new virus, a new disease. Bearing that in mind, how do you think the medical profession could have approached our care of Long Haulers better?
Gez Medinger: It would, oh God, that’s a really good question. I think there are lessons here you would like to think that there is now some wide acknowledgement amongst the medical community that Long COVID is real and that it’s a big deal, and it has a huge impact, not just on the individual, but on the people all around [00:26:00] them, but economically, and on the health service.
We’ve got 2 million people in the UK, we’ve got 20 million plus in the US, probably 100 million in the world. It’s a really big issue, and it would be sensible wouldn’t it to look at this and say, okay, going forward let’s maybe have, when we get something new, let’s maybe try and work out a way that evidence-based medicine can gather evidence quickly in a way that is maybe staggered. So yes, we don’t compromise the science that happens down the line, and we do our RCTs and high-powered trials and the rest of it, but maybe let’s have something in there that can basically get the wheels turning.
So, people like me, for example, don’t have to pick up the reins as patients ourselves and actually drive the knowledge and understanding of the condition forwards. Let’s try and have something in medicine that actually goes “Oh, this is a new thing. Let’s engage protocol that gets the wheels turning so that at least we can deal with people [00:27:00] better when they turn up to their GPs and say, ‘there’s something not right with me’. What could they have done better”?
I mean without that sort of thing in place I guess most doctors did the best they could, but the system wasn’t set up for it fundamentally, and there’s a whole bunch of the history of ME-CFS and the way that was treated and things like the PACE trial, which is another whole subject to get into, but that has also affected the way a lot of doctors see chronic illness in not a very good light or a very helpful light.
One thing I would say, and Danny may have already said this, is we were very good at dealing with the threat of Acute COVID in terms of getting high-powered trials happening quickly because there was political will. So, the Recover trial got rolled into action across the NHS really fast and spat out a result, dexamethasone, effective at preventing death, or reducing the probability of death with severe Acute COVID.
If we could have something like that with Long COVID, that would be fantastic. Why haven’t we had that [00:28:00] already? The answer is because there isn’t a political will, but we have the resources to do it with the NHS if there was the political will to do it. So, I guess the other frustrating thing is what the medical community is able to do is so interlinked and symbiotic with political will because that’s where the money and the organization comes from.
It’s very hard to separate those because we’ve got research happening all over the place, piecemeal, put together by passionate, academics and clinicians and researchers. They’re raising finances all over the place. But what would really be great is a coherent plan about here are all the big questions. How do we try and find the answers for them? Let’s try and actually do this in a coherent sensible way that knocks off the questions one by one, and actually drives us towards an answer rather than trying to build a jigsaw at random, which is what we’re doing at the moment.
Funmi Okunola: Yeah, we almost need a celebrity who is an advocate of Long COVID, a really big celebrity to take up [00:29:00] the mantle.
Gez Medinger: Nobody has really wanted to do that. I mean Novak Djokovic lost at the Australian Open recently. His manager said, “he had a cold/flu, and hasn’t been feeling himself”, and you can see in his first two sets that he wasn’t himself and the rest of it. Now, no one’s put Long Covid on that. Novak’s certainly not going to say “yes, I’m suffering from the aftereffects of a COVID infection” given his previous record. But it would take something like that, a world superstar, to actually come out and say, “this is real, and this is what it’s done”, I think. Would it change the political will? I don’t know. It would help people’s awareness, the public’s awareness, but I don’t know if it would change political will.
Funmi Okunola: We have possibly up to 400 million people worldwide currently suffering from Long COVID. How do you think the advent of this new disease will change the medical profession?
Gez Medinger: It’s a really good question. I think it should change the medical profession more than it will. I think the only way it’s going to change the [00:30:00] medical profession is by putting more pressure on them, more sick people, more….. more questions without having the answers. I would love it to change the medical profession, but in terms of I would love it to make the medical profession more empathetic, more, more curious, more willing to treat the presentation than maybe rigidly sticking to guidelines. But I understand why guidelines have to exist. It’s really hard – I think it’s weird.
I come from a place of science myself, but I almost feel like Eastern medicine, whether it’s acupuncture or any of this other stuff, is maybe more set up to deal with the patient holistically than Western medicine, which has increasingly siloed every single system to a degree where there is [00:31:00] this, when we get a condition that comes along that is this huge multi-system complex interconnected thing where almost every organ in the body can be affected. You’ve got everything from potentially immune system, immune dysregulation, gut biome, dysbiosis, metabolic disruption, dysautonomia, allergy issues, whether that’s muscle activation or something else, all of these things going on in an interconnected way at the same time, and you’ve got the nervous system tied in with this implicitly as well.
The Western medical profession is not really set up to take on a challenge like that. It’s really good at dealing with a single system that’s got a single problem. But it’s less good at something A, that’s new, and B, that is this complex and multi-system. So, I would love it to go, “Oh, okay, we maybe need to be a little bit more holistic”.
Let’s try and develop a new, specialism that looks at these multi-system conditions. I don’t think that’s going to happen. I’d love it to say, I don’t know [00:32:00] if it would happen.
Funmi Okunola: I think, yeah, there’s a lot in what you say. I’m hoping that it will change the medical profession, primary care, for example. Long COVID sufferers, Long Haulers need a team of people to work with them, and really, society at large needs a team of healthcare professionals to work with them.
The amount of complexity that we’re dealing with in primary care, one doctor sitting in an office cannot deal with it. We need counselors, social workers, nurses, pharmacists. It’s the care that you guys need. So, I’m hoping it will be an impetus because we’ve had one virus…
As you say ME/CFS has been around for years, and I was a perpetrator. I don’t think I gaslit anybody, but in the back of my head, I was brought up to believe that this was mainly psychological. I’ve been shamed into learning that this is a post-viral illness that mainly women have been suffering for years. We’ve had this unique opportunity.
We’re in advancement in science. Everybody caught this virus at the same time. There’s no denying [00:33:00] that Long COVID has come from it. There are so many sufferers and growing. I think medicine’s going to have to change.
Gez Medinger: I would love it to, but it’s the systems that are quite rigid, aren’t they? Without a huge amount of pressure from whatever the authorities are that govern those systems, I don’t know how much evolution we’ll see. I don’t know. I would. Yeah.
Funmi Okunola: Yeah. Thanks for your contribution today. Are there any last words that you’d like to add that you’d like the audience to take away with them today?
Gez Medinger: I missed one thing. So, if you’re listening to this and you’ve got Long COVID, and you’re wondering – I’m going to try and do this quickly because it’s not a huge subject, but I think it’s really important. It’s under, I think in terms of managing your own symptoms, and dealing with your own pacing, so that is to say, [00:34:00] not doing too much and making your symptoms worse.
I think one of the most powerful things that you can do in terms of understanding what’s going on is – are my symptoms getting worse immediately? Do they include things like, I swear when I say immediately, I mean upon exertion, do they include things like tachycardia, palpitations, dizziness, nausea, potentially chest tightness?
That’s basically dysautonomia, which basically means that your body isn’t regulating your blood pressure demands appropriately, and all sorts of other things. The whole nervous system is basically not regulating the body’s needs appropriately. That is a completely different system to manage, it seems, than the exertional post exertional malaise or post exertional symptom exacerbation that might happen 24 or 48 hours later.
That would seem to be metabolic in nature, which as we’re learning more, it looks like essentially our cellular respiration is happening [00:35:00] anaerobically more than it’s happening aerobically. What this means is that we’re not generating as much ATP, which is the body’s fundamental unit of energy.
We can basically do something in a day, use up our stores of ATP and then not replenish them enough. This is why we crash so hard much later. So, in terms of understanding where you’re at in terms of managing your symptoms and thinking, if I do this, then I feel very bad. It’s really, really helpful to know how much of that feeling bad might be Dysautonomic in the moment, and how much of that might be essentially the crashing fatigue, and the other symptoms are exacerbated because that comes about potentially as a metabolic source, which is the delayed, post exertional malaise characterized by ME/CFS as well.
Now, understanding how much of your symptoms fit either one of those will also very much depend on how you sit in terms of, “should I try and do a bit more to get better”? If you’re in the position where you’re getting crushing fatigue and symptom [00:36:00] exacerbation 24, 40 hours later, you need to be really, really careful not to spend more than your total amount of energy in a day, of whatever that total would be, so that you don’t feel awful two days later. But if you don’t get that delayed symptom exacerbation then there may be exercises that you can do, depending on your degree of dysautonomic response that can actually mitigate that and actually improve that dysautonomic response.
So, in talking to Long Haulers, is that one of the most common confusions I find is actually trying to work out what’s driving each of these crashes, essentially, that happens, and trying to work out what that is will help you hugely in terms of avoiding them in the future and giving yourself the best possible chance of recovery.
Funmi Okunola: Thank you for that. Gosh, that’s a real education for me. I’m going to go back and listen to the recording carefully and learn myself. Thank you Gez for taking part in today’s Episode. We [00:37:00] really appreciate everything that you do with regards to educating us all about Long COVID.
Gez Medinger: Thank you. It’s been an absolute pleasure to be part of it. Thank you.
Funmi Okunola: Some questions for listeners to consider.
What are your top five takeaways from this episode?
How will this episode change your practice or perception of this disease?
What will you do to act on what you’ve learned?
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SHOW NOTES:
1 The Long COVID Handbook by Gez Medinger & Professor Danny Altmann
2. Patcai J. Is ‘Long Covid’similar to ‘Long SARS’?. Oxford Open Immunology. 2022 Jan
3. Gez Medinger You Tube Channel
5. PACE trial & ME/CFS & Shepherd CB. PACE trial claims for recovery in myalgic
encephalomyelitis/chronic fatigue syndrome–true or false? It’s time for
an independent review of the methodology and results. Journal of Health
