Dr Claire Taylor joins the Long Covid Podcast

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Jackie Baxter  

Hello, and welcome to this episode of the long COVID podcast. I am delighted to welcome my guest today, Dr. Claire Taylor, who is a GP with a special interest in long COVID and chronic illness as well as an expert advisor in long COVID for the World Health Network. So I am really looking forward to diving into her wealth of knowledge today and finding out what it is that's helping her patients. So a very warm welcome to the podcast. 

Claire Taylor  

Hi, Jackie it's really, really nice to be here.

Jackie Baxter  

I'm so excited to have you here. So to start with, I'd love to hear just a little bit more about yourself and what it is that you do. 

Claire Taylor  

Okay, so I had a bit of a long and winding road into long COVID and doing MECFS, nast cell activation syndrome, PoTS and really anyone with a chronic illness that's not sure what to do next. 

I did quite a lot of specialties, before I became a GP, one of them was in rheumatology up in Shetland. And during the clinics, I realized that we had this group of people who had normal blood tests, who had something wrong with them. You know, they had sore joints, they had swollen joints, they felt terrible, but they had normal Bloods and normal X rays. And the end result would be returned back to GP with basically no diagnosis because their CRP was normal. So CRP blood tests that you know, when you go to your GP is part of looking at inflammation. 

So I was sort of questioning that at the time, thinking what do these patients have, because I'm not that satisfied with returning them back with nothing. And then I was doing GP training, I was doing cardiology, and I was pregnant. And I ended up supervising the tilt test. Because ironically, I was feeling so dizzy towards the end of the pregnancy that I couldn't walk around very much. So the lovely consultants said, Why don't you supervise tilt test, Claire? 

So I did, I started seeing these people who had PoTS. And I thought, this is super interesting, because actually think quite a lot of the patients I've seen in the past might have had this. So that was my sort of introduction to PoTS.

 But then I was carrying on with my training, I was always very, very, very curious about what was wrong with people. I didn't like medically unexplained symptoms that we were taught about. So I thought, well, that's our job to explain what those are. And even if we're not quite sure, you know, we should probably be making an effort by the 2020s, you know, we've sent man to the moon, you know, we should be finding these things out. And I found that medicine was a little bit stuck in the 90s, early 2000s almost, with lots of progress and other diseases, but not in the sort of immune type diseases that affect quite often women, actually, you know, and lots of labeling of anxiety and whatnot. 

So anyhow, then I was a GP and seeing my patients and started to learn more about Mast Cell activation. Realised my patients with irritable bowel syndrome, because I'd always wondered well what was the explanation for that? They're meant to have some sort of mystery signal from stress that suddenly affects their bowl, like, what's the - what is actually happening physiologically? 

And before medicine, I did a science degree in neuroscience, and did immunology and lots of other parts of that. So I had a basic, good background in that, and was like, well, what's the underlying thing? And I realized that quite a lot of them are quite allergic sort of people. So if you were to sort of scratch your skin, you could draw on their skin, for example. So it was like well, they've got this sort of active mast cells, you know, mast cells, and then you know. It's not pathological in itself, skin writing. But if you combine it with symptoms, and you start to wonder if there's an issue there. 

And then pandemic came. Mid sort of 2020, I started to see the first people who hadn't recovered from COVID. I wrote to the First Minister, I said, What do I do with my patients with - sort of mid 2020 - we called Long COVID. Well send them to existing clinics and I thought, Oh, no, here we go. That's not that's probably not going to work. But anyhow, that was the model. 

And then there was an advert for a doctor to work for a charity with ME patients. I thought, oh, you know, this is something I think I could probably enjoy, and do and learn more. So I got the job doing that remotely. And long covid patients started to trickle into that because they had nowhere else to go. And then during that job, I was getting everybody to do stand tests to check if they had PoTS, and almost everybody had PoTS. 

So by end of 2020, I'd worked out that almost everybody had PoTS, certainly that I was seeing the charity unfortunate went bust because of the pandemic, and I started sitting in on the long COVID meetings for the area. And saying I know quite a bit about this, I think I could help. I could run a service one day a week, for example. And they were very, very good. They know that we're keen on that. And then basically came back that there was wasn't enough funding to do it. 

That point, early 2022. I had patients in my own practice who'd had PoTS, I'd written to cardiology, they said, No, we don't do PoTS. Nobody did PoTS. Nobody's doing PoTS. And I just thought I had only really one way of helping people. And that was to set up my own clinic. Now it is a private clinic. But I just as a GP cannot have a clinic for the whole country, any other way. So I take patients virtually, because I know many, many patients cannot access health care due to being housebound, from anywhere in the country. I also face to face clinic. It's an amazing job to be doing, and also getting involved in research, etc. 

Jackie Baxter  

Yeah I mean, it's amazing. I found it so interesting how I mean, obviously, my route to long COVID and to working out what is going on with long COVID, and things like PoTS, and dysautonomia, and all of these things, has been as a direct result of having long COVID. And, you know, I obviously don't have the medical background that you do, either. So in some ways, why would I have heard of all of these things? 

But it's really interesting that actually, you knew about all of these things before Long COVID came along. And then when it did, you were going, Oh, hang on. I know this, like I've been here before. So you kind of had that foresight that allowed you to be able to help people, certainly maybe faster and easier than some other doctors that maybe didn't have that foresight.

Claire Taylor  

Yeah. And I think, you know, the way I had to make a decision about how can I do this, helping more than just the people in my practice, who are now doing much better and back to work. So when you've got that experience of that happening, it doesn't feel right to leave other - you know, I've been hearing about long haul clinics, and obviously, in England, they set up long covid clinics. 

But they were variable, and still are variable, in what is a rehab based model. I don't think works. I think you need all of that multidisciplinary team. But I think you need a doctor that is - I think you almost need a new specialty of somebody that specializes in long covid or post viral illnesses. Because it's not as complex as it looks. 

It's like everything else in medicine. It looks complicated, but almost all of my patients are very, very similar. I can work out within about two minutes that somebody has PoTS, whereas I have patients who have been to every specialty there is almost, and they've had tests and tests, and they've not been tested for PoTS. And the problem with that is, when people go to A&E because the heart's racing, and they feel like they're gonna die, right? They get laid down in a bed and the heart rate goes down. So then they get somebody comes and does an ECG and they say, well, you're clearly anxious, you're lying here with a heartbeat of 70. And it this message hasn't got through that we have an epidemic of PoTS. 

So the last count of long covid in the UK was 2 million people, right? It'll be probably more, that was quite a while ago, they've now stopped counting. And we thought about 50% of people with long covid have PoTS, right. That's what the stats are showing. So about a million. But on top of the people who already have PoTS. But I thought, I think it's higher, you've always thought I think it's higher. And the latest study to come out was 79% of people have PoTS. 

I actually think nearly everyone has a dysautonomia. So whether it reaches threshold for PoTS or not, that's 30 beats per minute, which was based on about 30 people, you know, what I like to do is go back and trace things. So, okay, we've got PoTS criteria, right, who made it? And what did they make it on? And I go back to the original studies, and I find that actually, there wasn't that many people in the study, right? So even people whose heart rate is going up 28 beats per minute, for example, even if they did get the test, we're getting told they didn't have PoTS, right. 

So we don't know how many people we have in the UK, with PoTS. But if we've got 2 million people as long COVID, and it depends, obviously how you classify long covid, but we've got, you know, an epidemic of PoTS slash dysautonomia, and I think the dysautonomia covers things like, you know, you've probably experienced this yourself, or people that you know, with long COVID, there isn't really a name for it, where the heartbeat just goes much, much higher when they do something like climb stairs, or you know, something that they would normally do. 

Now, inappropriate sinus tachycardia is a similar condition, but your heart rate is always raised. So that's not what these people have got. But there's people whose heart rates, they might not reach the 30 beats a minute for PoTS, but they walk up the stairs and the heart rate so 180 Beats Per Minute, that is not normal. 

And, you know, there's a lot of talk about deconditioning in medicine. And I don't think they're deconditioned that the heart rate going to 180 beats per minute on the third stair, or when they're brushing their teeth. So there isn't really a word apart from dysautonomia that would describe these things that people are experiencing. And, you know, for anyone that's ever had a heart that's racing, it's not nice. Itdoesn't feel nice, it's scary, especially for non-medical people. 

Like medical people straight away start to, you know, diagnose themselves with whichever arrhythmia they think they've got, right? But if you're not medical, you know, your heart racing at 180 beats per minute. That's scary. And I think going to places like a&e, because that's where you're probably gonna head when you're feeling like that. And then like being laid down, and having everything checked, and being told everything's absolutely fine. And going through that multiple times, and having other tests done for your heart, which you know, is appropriate. 

But to do all the tests, and then for me to do the 10 minute stand test and say, you got PoTS. And the peoples they just say, What? You know, like, I don't even think a lot of patients have considered it, unless they're very well read and know about it. And they might - sometimes people come to me with their own test before appointments. But actually, I think the relief sometimes that, right, that's what it is. Now, I know what it is. People are very pragmatic, you know, okay, this is what I've got, how do I improve things? Is there anything you can get me to help me with that? 

So I think in general, people often get told by various professionals, we don't know enough about long covid. But we have literally 1000s and 1000s and 1000s and 1000s of research papers on long COVID. Now, obviously, you can't expect every medical professionals read every long COVID paper that comes out, right. So that's another reason why maybe we need people who are specialized in this type of illness. 

But we know a lot, we know what's happening with the immune system when people get acute COVID. We've studied the immune system in Long COVID, there's papers on all of these things, and we're learning all the time. And people will be constantly told, Well, we don't know enough. And well, you might get better in time, I think is made this a very difficult disease for people to live with. 

And, you know, they're obviously comparisons with MECFS, a very similar illness and very similar experience. And you have this huge spectrum of people who - some people might be managing work, but they might not be managing anything else outside work, for example. And then you might have people who are completely bed bound, who literally cannot stand any sound, and I have to consult with their relatives, or carers. And it's utterly shocking to have that sort of illness, that nobody sees, that nobody hears about, because these people can't have anyone in the room. So often even their doctor can't come. 

And so we have a spectrum of illness, you know, about 50% of people with long COVID satisfy the ME criteria. And essentially, that is having post exertional malaise. So for anyone listening that doesn't know what post exertional malaise is, it is when - I would call it a relapse really, based on exertion, physical or mental. And it doesn't have to be exertion like you've went for a run, it can be standing washing the dishes can bring on a relapse. 

And you know, everybody's post exertional malaise can be different, the time it takes to get post exertional malaise can vary. But the phrase that I hear a lot from patients that it feels like they've been poisoned, you know this poisoned feeling. So you know, for those people, they tend to have PoTS. This is the pattern that I see, they tend to have PoTS. And I think some of these relapses are just autonomic crashes. But to have not a lot of a awareness about any anyone going through any of this, whatever you call the disease, right, whichever one it is, still shocks me. I still get really quite upset sometimes when I see people like this. 

Jackie Baxter  

Yeah, I mean, it's a big thing for me. People listening to the podcast will have heard this before. You know, I started off completely flailing because I didn't know what to do. So I tried to do all the wrong things and push through which as we all now know, was a really bad idea. But at the time, it was all I could do.

Claire Taylor  

But then, you know, I always say to patients, if that's what you've always done before? 

Jackie Baxter  

why would you change that? Exactly. 

Claire Taylor  

That's what people have always done before and they've, they've been okay. So no, I think that's just part of the whole, unfortunately, experience, is that it was different.

Jackie Baxter  

It's learning from that as well. I think but, you know, a big thing for me was then realizing, you know, I had all of these symptoms, and they were all, you know, seemingly so many different things. And you think, oh my goodness, how can so many different things all be wrong with me all of a sudden when I was beforehand, a quote unquote, completely healthy person? 

And then it was this moment when I understood what dysautonomia meant, where I went, Oh, my goodness, it's not a million things. It's one thing. And it was like that moment of understanding, of educating myself, that I found from doing my own research, that I suddenly understand what was going on with my body, and therefore what I could start doing to try to help. So you know, it was that education moment. 

But there's a thing about that makes me wonder, like, if me as a patient who's quite unwell can work that out. Like, there's something wrong with the system that that information is not getting out to more professionals who are in a position to help more people. Because it's not as you say, a particularly difficult concept once you understand that one thing, and whether it's you know, dysautonomia, if it's more specifically PoTS, if it's any of these kinds of umbrella of things, once you understand them, they've been around for a long time. And there are a lot of things that can be done to help those people once you've nailed down, you know, what particular thing that it is that they have! 

So it for me, it was that kind of understanding light bulb moment, that kick started, like almost the recovery, because then it last I had direction. 

Claire Taylor  

Yeah. 

Jackie Baxter  

And it sounds like so many people are lacking that because they're either unable to do their own research, or they haven't for whatever reason, or they've been to a doctor who's told them that they're crazy, or, you know, whatever it is that their experience is. And then when they find that out themselves, or if they come to somebody like yourself, who goes, Ah, well, you've got PoTS, and then suddenly they go, why didn't someone tell me this two years ago?

Claire Taylor  

Yes, it's really interesting. Some people come to see me, they've tried absolutely everything. And they might know they've got PoTS, or MCAS or whatever. And they've tried lots of different things, but they really want an overview, right? Then I have people who, I don't call it brain fog, because I think it does a disservice to what people experience. Cognitive dysfunction. And they're just not able to. And some people come to me and they haven't heard of these things. 

And you're right. I don't remember ever being taught about dysautonomia or PoTS in medical school. I don't remember ever being taught about it as a junior doctor. I don't remember ever being taught about it in any of my various places that I worked over the years. And I don't remember being taught about it as a GP trainee. 

So I recently did a talk to a few 100 GPS in Scotland. And that's what I talked about, with Dr. Amy Small. I think you've had her on before. She talked about her personal experience. And I talked about the sort of pathophysiology and the treatment. And you know, I was really impressed that a few 100 GPS hadturned up on a weeknight to find out more. I think that's really promising. But it's to give them the tools to be able to A. recognize it, and B. treat it. 

And you know what, people don't come to me and say, I feel dizzy when I stand up. They come to me with what you're saying, is like a multitude of symptoms. And they can't believe it either, you know, they've got symptoms from head to toe, they've got weird symptoms, you know, their hands are burning, their hands are turning red, their feet are going purple. They're dizzy, just generally Dizzy, regular dizzy lying down. The shortness of breath, palpitation, just, you know. And I say, Well, why don't we... 

so the 10 Minute stand test was very well validated against the tilt test. So the difference between the two, a tilt test is when you're basically sort of strapped to a bed, and it's tilted upwards. So you're in the upright position. But you're not using your muscles, obviously to stabilize your body, and your bloods taken, for example, to check adrenaline levels, or you could be given some GTN to dilate your blood vessels and see what happens to your blood pressure and your pulse, right. 

Or you can do this 10 minute standing where you lie down first measure the parameters, stand up, measure them every one or two minutes for 10 minutes, unless somebody's going to faint, obviously. Don't do the test unless you've checked with your doctor that you're not going to pass out doing it, because I do know people that you know, have had to do it in the doctor's office because of that. But it's very well validated. And it may be more specific in that the tilt test may pick up more patients who don't have PoTS. 

So whenever you're doing a test, you're looking at how specific it is and how sensitive it is. Does it pick up the right cases? Or does it pick up too many cases? Or does it miss cases? And tilt tests are absolutely fine. But actually the really simple 10 minutes stand test is pretty well validated. If I thought somebody still had PoTS with a completely normal stand test, I would get a tilt test. But actually, if it's going to show up on the stand test dead quick, and I can start the treatment straightaway, there's no delays. And so you know, when people come to me and it's quickly diagnosable, can quickly start some treatment. 

Jackie Baxter  

Yeah yeah, exactly. So can you talk us through maybe what sort of things you would suggest in terms of treatments or things that people can do at home themselves?

Claire Taylor  

So yeah, that's generally, you know, many people listening might know about this already, because you know, fluids, and extra salt and compression stockings, and they can make a massive difference. So one of my patients did me a graph of extra salt. So she is amazingly good at doing graphs and collecting data. And she gave me permission to show it in one of my talks, and you could see when she went up on the salt, we sort of usually advice six to 10 grams a day, unless somebody's got a condition where we wouldn't advise it. Obviously, there's some people that you wouldn't want to take it. 

But so my patient did this for me. And you could see the heart rate on standing on the graph, with each increase in salt, coming down. So the gains to be made could be sort of 10 to 15 beats per minute on standing coming down, because you're loading with extra salt. Electrolytes, a lot of - patients have worked out electrolytes will be nicer than adding loads of salt to your food, for example. I'm always amazed by what patients come up with to manage this. But those those things on their own - and I like to get people to try it, because I think getting into the habit of that is quite important. 

If somebody's bed bound, literally and kind of, you know, I'm not going to wait around too long before sorting that out. But you know, if somebody actually who has not tried these things, and getting into the habit of doing it, I think it's really important if you've got PoTS. Now, you might not have PoTS forever, because PoTS can resolve. And in fact, mostly does. Going by studies, overtime, mostly does. If we get to the habit of those things is really important. And then, you know, most people do need a medication added in, or two, or something three. 

And people will say, Well, do I need to be on these forever? Well, maybe not. Maybe they can be reduced down in time. You know, it's everybody's different. What I do is individualized care, because I've got a lot longer than GP does. GP's got 10 minutes. And that model of care is not set up for chronic illness. So I've got longer, and I you know, I do full history, like we were taught in medical school, you know, the first thing we were taught apart from anatomy and physiology was taking a history, the person's story. And then doing an individualized plan from that. 

I might use similar meds for different people. But actually, there's quite a lot of thought goes into which ones. And as I say, the threshold for starting that depends on how unwell somebody is. But I would say by the time people get to me, they've mostly tried very, very hard to get somebody to sort them out. And they just, they're stuck. 

I think as a doctor is always good to say to your patient, you know, have you had any thoughts about, you know, what you would like to do? And then I think you can then be on the same page together. Sometimes consultations, you can have a doctor going one way, and the patient the other, we completely miss each other midway, and it's not anyone's fault. I think it's just sometimes it's the way that consultations go. 

So I think, sort of exploring what people already know, and what they are thinking about, and then trying to get a plan together. So maybe somebody suggested medication, but actually, that one's not suitable for them for some reason. Or it might that I suggest one, but they've already tried it. 

I would say the biggest gains in treatment at the moment come from treating the dysautonomia and mast cell activation, and modulating the immune system. So that it is not hyper-inflamed. So we were talking earlier about CRP, right. So CRP is one you get done, go to rheumatology or your GP m dight do it if they think you've got an infection. It goes up with infection and inflammation. 

And what we know from these studies now that have been coming out since 2020. And actually, that's not the one going up usually, it's other ones like your interleukin six can go up. TNF alpha, TNF gamma. Interferon is another one. So it's very important part of the immune system. And we generally don't measure the cytokines and chemokines and mast cells activating. 

So we were telling people that they've got no inflammation or no signs of illness on their blood tests. And doctors are doing the blood test and they're doing, you know, appropriately following the guidance. Actually, what we need to do, is we need to take these bloods that we know in research are raised, and I think we need to bring them into medicine, because I think A. it helps you with the diagnosis. B. It might help gauge your treatment and C. the validation to people to know that their poisoned feeling is reflected in all of these things being abnormal is super important. 

Because it's a merry go round of this test was normal, that test was normal, and not always all the right ones have been done. But the ones that are done are normal. Or they're just a bit not normal, slightly off normal, but not enough to be sort of anything in particular. So I think we need to bring those into medicine. 

The thing about tests is you've got to validate them, and you've got to know what's a positive, what's the negative, what's a false positive, false negative. And I think, given the challenges the moment, you know, that's not happening. 

I see a lot of the bloods that people get done by private labs. And I do see a pattern of raised interleukin 6, raised interleukin 10, TNF alpha, CCl five, VEGF - so there are a whole pile of them. Some of them are to do with viral activation of the immune system. Some of them are to do with autoimmunity, some of them are to do with clotting. So I've seen those results from quite a lot of patients. So I know they're abnormal. 

I mean, when I see patients Jackie, I understand that what they're telling me is what's happening. I never question that if they tell me this is happening to this part of their body, that this is happening. You there's quite a lot of research that before people go to a doctor, they've done quite a lot of thinking before they even make the appointment. And they've already thought about what they're going to say. 

Generally, they come in, and they tell me their story. And that's the story. There's, there's no doubting of the story. There's no sort of minimizing of the story. That is what's happened to that person. And I think it's important. I think in 2020, people at the ill-est time in their lives were told to stay at home. And I think the trauma from that is unaddressed. 

You know, when you're not well, you expect to contact the health services. And I know people who, you know, wrote letters to their families at home. And I mean, that's horrendous, that would not have happened pre-pandemic, and it is part of the sort of unprepared response. And so the things that would have been done usually, weren't in a lot of people, and I think there is some trauma from that time.

Jackie Baxter  

Yeah, and that was certainly my experience. And it took me a long time before I realized that actually, the fact that I wasn't, quote, unquote, Ill enough. But in any normal time, I would have been rushed into hospital, you know, flashing lights and everything probably, given what my symptoms were. And you know, when that then goes on, and on and on into long COVID, into several years of that, where you're sort of actually worrying about going to sleep, because you're not sure you're going to wake up. Like that's pretty traumatic. 

And, you know, it took me a long time before I realized that, you know, I had a lot of trauma from this. And once again I put a name on it, it was the same as with the dysautonomia experience. When I had a name on it. I was like, Oh, now there's things I can do. It was I suppose maybe what you just described as being a kind of validating experience. It was like, Well, you know, a lot of this other stuff is getting better. But what is this new thing? You know, why is this thing still there? And being able to say, right, okay, this is trauma, this is something that I can now start to see what I can do about it, or how I can move on from it. 

Claire Taylor  

Yeah I still have patients now. So now, mid 2023, who have booked appointments to see me, been ill since 2020, who, when they get to me, haven't had any treatment whatsoever, and haven't had simple tests for PoTS or whatever. 

Now, I think everybody's got a different approach to MCAS. So there are two global consensuses, for MCAS. And actually, in medicine, there is generally a very poor understanding of this condition. And I think again, that's because it's never been taught to anyone, I don't remember ever being taught about it. And the two global consensus are very different. 

So one is very strict about blood tests, one of which is tryptase. You know, I've had doctors write back to me saying, Well, no, you've got to have a tryptase of x to have MCas, or you've got to have a urine level of histamine of this, or you've got to have prostaglandins of that. Now, these urine tests are very pernicious, in that they've got to be kept on a cold chain from start to finish. So, you know, even getting them collected properly is a challenge. 

And sure, we don't know a huge amount about you know, for example, to be talked about a lot about histamine intolerance. Mast cells, release a couple of 100 mediators and what that means is they release what is needed in a particular situation. So I usually describe them as like the Usain Bolts of the immune system. 

So our bodies have got ancient systems right? Before doctors, before hospitals, our bodies had to defend themselves. These are the systems that are actually impacted by COVID, the autonomic system is ancient, and there to protect us. And the same with the innate immune system, which is the first part of the immune system, which is where the mast cells come in. And at the first sign of trouble the mast cells go, what on earth is that? They activate - so mast cell activation - and they send out signals to other immune cells. Like they're calling their friends for help, they come along. 

Now, the reason it gets round the body is that they make the blood vessels a bit leaky. And that's how you can get like a local response that turns into like a systemic response. And if you look at any diagram of long COVID, and you know, including micro clots, you know, including viral persistence, include, you know, all of the different theories, you will find that mast cells always feature in there. They're there. And so they're super important cells. 

Now, in a full blood count, when you go to your doctor, it measures things like neutrophils, measures things like Eosinophils. Doesn't measure mast cells. So even the measuring of histamine or prostaglandins, it's not really measuring things that we know huge amounts about. 

So just a different group of doctors who looked at one and said, Actually, we don't deal with that. And so they said, actually, if you've got symptoms of mast cell activation, and you've ruled out other conditions. You know, very important to do that, super important, because MCAS can mimic other conditions. Actually, if you respond to treatment, and you are experienced doctor in this field, that is enough to diagnose MCAS. 

Now, if you've got long COVID, and one of the studies suggested nearly 80% of people with Long COvid have MCAS, then yes, obviously, we have to rely on other conditions with everyone with Long COVID. And we have to make sure they've not got complications that we could detect, things like blood clots, or inflammation in the heart. But if you've actually looking at whether somebody might have MCAS, actually, there's a very, very good chance, you know, if you're using logic. 

When you've got a long covid patient in front of you, there's a very good chance they've got PoTS, or dysautonomia, and there's a very good chance they've got MCAS. And there's a moderate chance you've got some sort of inflammation. But, you know, looking at common things being common. That's the things that you see. 

If you want to dive into the pathophysiology of long covid, well that's slightly different, because what activates the mast cells? Do the mast cells activate the other things that are going wrong? Does viral persistence activate them? Is it just a roundabout hyper inflammation? That's the bit we're not quite sure of. But this "we don't know much about long COVID" isn't true.

Jackie Baxter  

Yeah absolutely. And this - I don't know, it sounds almost like an excuse, doesn't it? Oh, well, we don't know that much about it. So let's put you in the kind of crazy box. Whereas actually, if you start to break it down, as you just have, there's a lot of different kind of like, you know, spaghetti strands of it. But actually, if you start pulling at the strands, then you start just kind of, you know, work things out. And then once you've worked things out, then there's an awful lot that can be done about it. 

Claire Taylor  

And I think there's a lot to be gained by people first seeing somebody that knows all this, rather than the other way around, which is three years into their illness. And you know, I've had some Allied Health professionals sitting in my clinic recently, I've had a dietitian and an OT, because they're interested in long covid, which is fantastic. They were blown away by what can be done. 

And then they can come in. Once you've sorted those bits, if it is medication, it might not be the first one. But you know what, once you've got that bit sorted, then people are maybe thinking about going back to work, for example. An OT is invaluable for that, physiotherapy, you know, people that can help with that part. Because that's the part I'm not very good at, you know. I usually say a very, very slow phased return, literally as slow as you can go, and with adaptations and adjustments, and whatever, but actually, these people can be really, really, really helpful. 

And, you know, respiratory physio can be helpful because the most recent study into the vagus nerve showed that 1/5 had thickening of the vagus nerve. The vagus nerve is the longest nerve in the body, starts just behind your ear. It's a cranial nerve. So it originates in the brain and it travels down your neck, into your chest, into your abdomen. It's basically the highway for signals from your brain to your organs and back again. So your brain needs to know what's happening in your gut. Your brain needs to know what's happening in your heart. 

And if it's thickened, and we think it's probably inflammation, then you're going to get dysfunction of that and that is a dysautonomia. Again, so you might not be dizzy when you stand up. But you might feel awful after eating and get palpitations after eating, for example. But you know, that's a super important thing to know. And they also found in the same study that the diaphragm is flattened, so probably to do with innervation of the diaphragm, and actually, that was reducing the lung volume. 

So, you know, if you've got clear lungs on a scan, and you've ruled out blood clots, and you've done your best to make sure that you've done pulmonary function tests, you've done all of these things, which, as they don't always happen, but in an ideal world, then actually having a respiratory physio might help at that point. 

And I think we don't have a magic pill at the moment. I don't know if we ever will. And I think it is important to ask people, What is important to them? Is it being able to take the kids to the park? I've got teenagers who are just turned 16. So you know, for a lot of them, it's being able to see their friends or go to school, and they haven't been to school for a few years. And then they are treated, and then they can go to school. But they've lost two years of not being at school, and quite often have been told they just need to pull themselves together. 

But very slowly, hopefully with education, and we do webinars, and we do, you know, do all this in our spare time, to try and educate so that another person knows about these conditions. 

So at the start of COVID, we found lots of medications that helped for acute COVID. We found that dexamethasone helped, toklezmet (sorry, even with all the googling I can't work out what this one is), and antivirals and monoclonal antibodies. And we did that very, very quickly. And the UK was a big part of that. And the loopholes, where you take ages to get ethics and all of the rest of it. They were all opened up. Right? And then once we found that out, closed again. 

And I think for long COVID, if there's one thing I would want to see is that opened back up, so that people like me, people like the teams doing microclot research, people like the teams looking at viral persistence, could rapidly investigate. And instead of doing prevalence studies saying, Actually, we tried this medication on this number of people. And actually, then this worked. 

So we think we know what works because we're using them. And not everybody is going to get better and go back to work. But quite a lot of people are getting better. And I've got patients who've had ME for 10 years, never had a diagnosis of dysautonomia, being treated and they're now being able to leave the house, you know, and go places. So it's super important that we do these things. But we also need to know that that's not where we stop.

Jackie Baxter  

Yeah, yeah, absolutely. We need to keep looking for sure. So we were chatting just, I think it was just before we started recording, about the immune system. And, you know, I mean, I find this really fascinating. And so I suppose the question is, as someone who, you know, actually understands the sort of virus-y stuff, but also, you know, what can we do as individuals? What should we do if and when, you know, infection does happen? So, yeah, what are your thoughts here?

Claire Taylor  

So, I think the responsibility has been put on the individual, that's what's happened. And, you know, in a democracy, do people deserve to be protected from pathogen that might harm them? Probably. But you know, it's such a divisive situation now. And, you know, it's not even just online for people, you know, families that don't agree on on things. And you know, very, very difficult for people who've got kids at school, or who work in health care. 

But you know, if you look at the sort of risks of COVID, so people sometimes don't always understand risk. So, for example, if you have COVID, you have quadruple risk of pulmonary embolism, right. You've got double the risk of a cardiac arrhythmia. But it depends on your risk to start with what that risk will be. Now this study, Dr. Al-Aly, looked at cumulative COVID infections, found a cumulative burden of disease. 

Now, for your immune system, actually, what was found in acute COVID was that this interferon, this cytokine, one of the things that's released you know, when we're talking about the innate immune system, and your body is primed, as I said, historic, you know, it's ancient, actually, the robust response is actually what made people very, very ill. 

But I think we have more of an epidemic now of young people, who are the people who are more exposed. So if you think about the amount of contacts somebody has, they've got a few children or they work in, like music or something where you're performing or you know, or medicine or hotel or whatever it is that you do, where your exposure is higher than somebody who maybe is older and is retired and doesn't have as many contacts. 

I think for, you know, what can you do to, you know, make sure that you're as healthy as possible. I think it's always good to eat healthy, to do what you can to sleep well. And that's easier said than done. Making sure that if you do get unwell, that you are resting, and, you know, doctors don't always take their own advice. But generally, if you can, if you've got an employer that, you know, you can rest, if you get COVID rest. And as you found out, unfortunately, don't dive back into the same as what you were doing. But you know, we know a bit more now. But for some people that might be okay. 

But as a general rule, you know, just taking it easy, you know, you've had a virus as an it's a new virus, and taking it sort of easy, vitamin D, a fairly straightforward simple one, you know. And generally taking time for yourself as well, you know, it's a really busy world, and we're in a really uncertain world. 

And I think every covid infection can be different. And I think, if you're a couple of weeks out of COVID, right, and you don't feel right, you feel actually, I don't think I could manage what I'm normally doing, I think that's the point where you need to see your doctor and get some advice. And you know, phoning up and say, you know, could I have a double appointment? Because instead of 10 minutes, you've got 20. Actually, you know, I've got quite a lot of symptoms going on here. I'm not sure what to do. 

And hopefully, you know, that is something practices are able to do, you might have to wait a little bit longer. But I think if somebody's having a double appointment with a doctor, you know, if possible, having a list of things, but certainly, I think I think possibly they might all be connected, but I'd like your opinion on it. And generally, a Doctor will go through and examine and then check. 

And if you think they've not mentioned PoTS, and you think actually, I've read about this, or I've listened to this podcast, and I think I have it, I would say at the start. Have a sort of agenda and say I'd like to discuss this and this, and maybe sort of giving your doctor time to find out more about it. 

People with pre existing health conditions have got an eight times risk of long COVID. So you might want to be more cautious after COVID, for example, because you've got a higher risk of complications. I think everybody just needs to be a bit sensible. I think, you know what? Test for COVID. So there's a lot of at the moment, well, what's the point in testing? You know, and I get, you know, I get it, nobody else is, and nobody's wearing masks. 

But actually, if you don't test, and, you know, I had to test for seven full days before mine came up positive on those lateral flows in my last infection. That's because they're only about 30 to 40% positive in the first four days. So there hasn't been much education I don't think, to the public about these things. And maybe avoid people are possible, because you don't want to pass anything on to anyone else, really, you know, it's actually not great to be passing on things to other people. 

But I think if you test for it, and you're positive, I think if you do go to doctors, then we know the stats for things like myocarditis, we know the stats for things like blood clots, we know all these things. And I think it's probably helpful to know, if you've had COVID, especially if you start to develop problems after infection number four or five. Because then your doctor or somebody like me, who's done a lot of this, thinks actually, maybe we need to take this quite seriously because we're on an infection four or five. And we don't really know what happens by that stage. 

But at the moment, I think it's probably worth testing, although I appreciate that they're expensive. Some people might have to choose between feeding their children, of course, they're going to feed their children. And I think this is why I think governments need to provide these things still. 

So you know, I think it's probably worthwhile keeping up with the news, maybe if the numbers start creeping up at some point in the year, you think, right, okay, I might not do the cinema that I was gonna do. Or if I go I'm gonna wear a mask. I choose to do quite a lot outdoors. Because it's better than indoors. But you know, I appreciate that everybody's got different priorities. Everybody's got different things going on. But I think it's just worth bearing in mind that anyone could get long COVID. And if you get long COVID, honestly, the cavalry is not there. And the less people with long COVID the better. 

Jackie Baxter  

Yes, and then although there are many things that can be done, it's not like a quick fix.

Claire Taylor  

Yeah. So that you know what, and the sooner you see somebody that know's about it the better, and just keeping an ear to the ground about what's happening. And whether you know or not, the numbers are high, you know. At the moment in Scotland, you can check the wastewater levels. So there, you know, march 2022, there were 200. So it's not exact. But if you've got a comparison. 

Now, it will depend on your immunity, what's happening is people are going from getting COVID, to then becoming susceptible again at some point, and going back into the susceptible pool. Now, some people may not get it again for ages. So you know, whether it's to do with their contacts, or whether their immune system is just good at recognizing it. I mean, half of COVID infections are asymptomatic. 

But what happens is people go in and out of the susceptible pool. And that's why you see these waves up and down, waves up and down, is people going in and out of the susceptible pool. Everybody will be different, in how long it takes them to end up back susceptible. And that's why we've got vaccines, obviously. Now, they don't, unfortunately, prevent all transmission. 

So probably what we need is something that prevents transmission. And once you've got something that prevents transmission, then you're winning, right. But we're not quite winning yet. As I said, if you do find yourself with COVID, and you're not recovering, have a look online, have a look at resources and see, you know, there's loads of brilliant resources online for advice after COVID infections, including your podcast, Jackie. 

Jackie Baxter  

Yeah thank you. Well, thanks so much. What would just been really nice is just to finish on a sort of a positive note. Are there any sort of, you know, recoveries or success stories that you can share?

Claire Taylor  

Yeah, so when I do my clinic, I never know what's going to happen that day. So I could review eight people, 10 people, I don't know. And everyone that day, could say, you know, I've been able to go to, you know, my friends. I've been able to go to the shops, you know, I can eat something I couldn't eat before. I feel like I'm coming out of this horrible thing I've been stuck in, I'm back at work. 

And you can have another weeks where somebody says actually that medication you gave me didn't quite do it. But actually, you know, the ones who say they're back at work, or they're about to go on holiday, and then they say, can I give you a hug? You know, that is the best medicine I have ever done. So I think overall, for things like PoTS, you know, the evidence is that it does resolve around about 18 months. So even if you're in the thick of it, I have seen people come out the other side. And I have seen them get back to work. And I have seen them get back to exercise. 

But it's what's important to a person, you know, what is the thing that a person values, that that's what they would like to be able to do again. Because when somebody gets sick, there is so much loss, there is loss of health, but there's also loss of identity, loss of job, loss of somebody's lost relationships. And there's all of that to deal with. 

But then I might not be able to get you 100% restored to what you were, but what is it you would like to be able to do? And I think we can do that, with the meds we've got at the moment. But having people who are feeling so much better and able to do things that are important to them is why I keep doing it. And why it is the best job I've ever had.

Jackie Baxter  

Well thank you so much for joining me today and for giving up your time to chat with me. It's been really interesting and hopefully really helpful and hopeful for those who are still struggling. So thank you so much.

Claire Taylor  

No problem anytime, anytime.

Transcribed by https://otter.ai