#2 How heart rate and symptoms are connected with Cardiologist Dr Boon Lim

[Music] Welcome to Make Visible, the podcast shining a light on complex chronic illness. I am your host Emily Kate Stevens and I've been living with an energy limiting condition since 2020. Here I will speak to the world's leading experts to bring you the latest science research and insights into invisible illnesses, including MCFS, EDS, fibromyalgia, pots, long COVID and more. [Music] Hello and welcome back to the next episode of Make Visible. I am so delighted by the response to our first episode of this podcast. We are here to create something that is useful and interesting for our audience. So your feedback is invaluable. I had requests of subject matters that you would like covered and diseases such as chronic Lyme that you feel are currently underrepresented and we are definitely intending to focus on. It's really useful hearing what in terms of our audience is missing out there in the media space. So please continue to feedback. We are trying to build something for you. This week I had the pleasure of talking to Dr. Boone Lim, eminent cardiologist and lauded electrophysician of the heart. He provides an in-depth look at the root cause of the symptoms of postural orthostatic tachycardia syndrome and suggests some remarkably simple solutions that can be easily overlooked or discounted. He has performed thousands of life saving heart procedures. He is the clinical lead for the nationally renowned Imperial Syncopy Diagnostic Service based at Hammersmith Hospital in London. He's an expert in vasovagal syncopy and is a leader when it comes to diagnosing and managing pots. Pots is prevalent in so many of these chronic conditions that we're looking at in MECFS Lyme disease, long-covid, in autoimmune disorders. It's also associated with neuropathy, with diabetes. It's reached as huge and its diagnosis and treatment is often challenging as discussed here in today's interview with Dr. Boone Lim. Dr. Boone Lim's knowledge is so vast that I've actually had to split this conversation over two episodes and that's something I'd like your feedback on as well, please. We wanted to keep these podcast episodes of a manageable length, particularly given that many of our listeners will be suffering from these complex chronic conditions. The follow-up episode will take a step back and Dr. Boone Lim will discuss his holistic approach to healing, breath, work and stress management. If you enjoy this episode, please review, comment, get in touch with us via all the means that are shown on your podcast app or on our website. And perhaps we can get the second part of this interview out sooner than two weeks time. Today's episode I hope will give you a few simple practical tips that you can take away. During today's interview, Dr. Boone Lim does reference a diagram that is in one of his videos on the Stopfainting.com website. So if you're in a position you might enjoy having the Stopfainting.com website accessible so that you can see. I hope that you'll agree that for such technically competent and brilliant electrician of the heart, Dr. Boone Lim approaches this subject matter in such a human and holistic way. It was such a pleasure to record with him and I hope that you take that same pleasure from listening to this interview. A cardiologist and an electro physiologist. Your work is absolutely huge. What you have been working in prior to COVID, you're a cardiologist so it's very specifically related to the heart. Have you seen since COVID first hit your work shift in terms of what is your biggest requirement in terms of your focus? Two ways to answer that question. It's a very direct question. So number one, the good old bread and butter cardiology continues to come into my clinic. So as an electrical focus cardiologist or an electro physiologist, I'm in electrician of the heart. So I fix problems with heart rhythms. And so that workload continues and it has continued before during and after COVID. And that is something that has not shifted that much. But the whole new world that I see since COVID, especially with my hat, which I wear in Imperial where I work, I work based at Hammersmith at the Imperial College Healthcare NHS Trust. And what I do is I run the Imperial syncopy unit. Syncopy is a term that means fainting. And as part of syncopy, we conduct autonomic function tests and that principally involves a tilt table test. And there was this condition which we had seen and known about for some time called postural orthostatic tecarchicitis syndrome, which I was quite familiar with. And was making diagnosis on tilting and helping patients along. COVID just led to an explosion of patients who had either got pots. The term postural orthostatic tecarchicitis syndrome is shortened into pots. Or pots like, so they demonstrated pots like physiology on the tilt. And so that was the change that we saw a lot more patients who were intolerant to standing. And if you think about the term pots itself, it means postural, which is obvious, you change your posture from lying to standing orthostatic actually means the same thing, a changing posture tension or stress. Tachycardia means a heart rate that's greater than 100 beats per minute in the true medical definition. And then syndrome, it does what it says on a tin, the tilt is a standing challenge. And when you stand patients up and you notice that the heart rate rises by more than 30 beats per minute sustained for 10 minutes. And they develop the typical constellation of symptoms, which encompasses dizziness, shanus of breath, chest pain, palpitations, light head and thus nausea, feeling hot and bothered. Then you have the the starting of a diagnosis of auto-static intolerance. And if they meet that threshold criteria for the heart rate rise, then you might even call it pots. There's one other qualification though for pots, I mean for those patients who are listening and who really want to understand the technicalities of the diagnosis, it's not only a heart rate rise of greater than 30 beats per minute on standing and persistent for 10 minutes. It's also almost daily symptoms on standing for the last three months. So the tilt is only one component. And in fact, I can make any healthy patient have pots physiology for 10 minutes by keeping them dehydrated in a very hot room. And if you came back from a marathon and you weren't hydrated and I stood you up after lying down, you might feel dizzy, light-headed, shanus of breath with chest pain, your heart rate might rise. But you don't have pots because in the preceding three months, you were fit and healthy. So it requires that additional component and it gets some of your views away from this idea that, oh, you go and have one test and it will tell you the absolute diagnosis because the history taking is also very important. When somebody attends my unit for a tilt, you need to know what they've suffered with over the preceding three or six months. It's a persistent problem. But what's quite interesting about that is that the tilt's table test plus the symptom autology can lead to a specific diagnosis. But you also mentioned there that pots like symptoms. People can have some of these symptoms associated with pots and not fulfill the full criteria for having pots. Is your treatment, your strategy different, whether there is a full diagnosis or not, or are there things that we should put into place or can put into place regardless of whether you pass or fail on a tilt table test? Which is it? Passing or failing, if you- I don't know the answer to that question, to be honest, I'm never considered you're a failure just because your echocardiogram showed like you've got a bit of my trovaul proleps. It's not a fail-al-pass. It might be a fail-al-pass for the person doing the tests if they don't meet the stringent criteria. But certainly, I don't want a patient to ever feel that they fail-al-pass. I mean, it's such a negative judgment. But from the point of view of your question, it's a super nuanced question and I'm so glad you asked this. Because what's in a name? You know, a rose by any other name still smells a sweet. And whether it's pots or a subclinical threshold pots, and what's the difference? Anyway, if your heart rate rise by 29 beats per minute and you had all your symptoms, and then you have another patient, or you on a different day, a bit drier, and it rises by 32 beats per minute. What's in three beats or two beats a minute difference to make your labels so strongly given pots or not? So when I discuss with patients, I come away from labeling and I push into physiology, or in this case, pathophysiology, which means I want to understand and I want patients to understand why they feel the way they do. And I think that narrative sets up a much better interaction because the patient who comes for a label is typically coming for a purpose, which is fine I can comply if the criteria fits. But the patient who comes to say, "I just want to know how to get better and I want to know what's going on." Now that's the starter that is set for success because when they take time to listen to you and your explanation about what happens to create the symptoms and what happens when your heart rate oscillates and may or may not reach that magic threshold that some group of people set around a table and decide that, "Oh, we should be 30 beats per minute because it's easy." - Yeah, some temperature threshold. - It's an arbitrary threshold. Like with all things in medicine and science, we need to define cut off points, right? And I think the person who's looking for a label may be disappointed, but the person who's looking for an explanation and understanding. - And a path to healing. - Yeah, about how to heal. I think it's very useful. - And I went to see Bessel van der Kolk talk on Tuesday evening and I had very interesting conversations about people going out and seeking labels. Now, some of them are absolutely necessary, but you give me a definitive diagnosis and then I know what the problem is and then I can be fixed and I can use that label for certain, as you said, certain elements in my life. - I completely agree. So the requirement for some kind of a label for pots or not, I do understand it to a degree because I think with a lot of these conditions and we discuss conditions further than COVID-induced pots, people feel the need for some kind of recognition. I don't mean in a public sense. I mean, there has been so much gray area around this that I think when people come to someone like you, they want to be told, this is what it is and we can sort it out. And a specific diagnosis can sometimes feel that they're being seen and heard. - I think everything you said is very valid and oftentimes you have to make a call and you have to read the energy of the frequency of the individual sitting in front of you. And you have to know what exactly they're after and sometimes you have to steer the ship slightly differently because if they're after a label to get more exam time in school and that's all they want from clinic, well, it's very difficult to see that person healing if they don't want to hear anything else. And we have such patients and as a cardiologist, I'm sympathetic or as a person who can say that the 29 beats per minute, well, maybe it's 32, we can give you that label because they do suffer on a daily basis and these are patients who come to clinic and they are suffering and it's equally damaging for some not to have the label of thoughts because they're heart rate on that day when they were fairly hydrated, they had a good night's sleep, they were not stressed for during a tilt table test was just 25 beats per minute, right? And so that's not the usual, they had a particularly good day. And so to not come away with that label is very challenging. So there is another term that I use which is called orthostatic intolerance with a reactive tachycardia or I like to describe it to underscore the mechanism. So it's a reactive adrenergic surge. So an adrenergic surge means you have a surge of adrenaline. Which happens to us when we stand up anyway? Yeah, so even in a normal person, any of you look at a range of normal people when they stand up particularly after they've been lying or sitting for a long time and not moving your feet, you typically get a slight drop in cardiac output because the blood shishwood gravity and it's pooling in the legs. And this tension may last for let's say five to eight seconds because the cardiac reflexes come in quite quickly. So you typically get a heart rate increase between five and 10 beats per minute in a normal patient for five to eight seconds. And even with me, I don't have pots, but on certain days when it's very hot and dehydrated, I can stand up and go a bit woozy. I know my heart rate hoots up. And then I steady myself, I flex to muscles and my lower limbs to do a kind of isometric exercise. Is that something you consciously do or is that what our body naturally does? Mostly unconscious and then things will settle. And even if you don't consciously do that, you will find that things just self correct. And you might just feel the trans and light-headedness for five seconds and then you stop for a while and then you just carry on. And most people don't even think very hard about this. The trouble with patients who have long COVID and autonomic dysfunction with this reactive adrenergic surge is that the blood keeps pooling or the blood shift against gravity or towards the lower limbs, the lower half, and including the splank-naked bed. And this is something people don't often talk about or think about. The splank-naked vascular system is a huge reservoir of blood that resides in your gut. And if you unfold the capillaries of your gut, you could probably fill half a tennis court in terms of the surface area. And so you know that the gut has a vly and microvily all this fronds to increase the surface area for absorption just like in your lungs. You've got this elbow, the sacs to exchange oxygen. And the gut is very similar 'cause your body is such a complex organ. And so the blood vessel surface area, right? If you think about capillaries as wide as a single red blood cell, right? That's mychrons, I think 12 mychrons. Each capillary can only take one blood cell at a time to maximize the exchange of nutrients, whether it's oxygen or glucose or proteins. If you unfold all of that and you expand the capillary bed, you can pull a lot of blood in your splank-naked bed, which is why patients often feel worst after a large meal in a hot, stuffy restaurant with a glass of wine, which vasodalates your skin and in your splank-naked and then you stand up because you're feeling hot and bothered and you wanna catch some fresh air or go to the bathroom and that's when patients have a different condition called vasovagal syncopy or fainting. But that's when they have the maximum tension in their system where on standing, the volume of blood, which is circulating in the core circulation, the heart and the brain, just sinks. And as the heart's stroke volume is emptied, so the heart contractility, for example, if you were pushing out, let's say, 80 mils of blood with every contraction, when you stand up, it might drop to 75 or 72 mils of blood in a normal person. In a person who has autonomic dysfunction and the kind of pots like syndrome, that blood volume because of the shift into your splank-naked bed and lower limbs with standing may drop to say half, so 40 mils. And the only way you can compensate to maintain the cardiac output is to, let's say, double down on your heart rate because the cardiac output is a product of stroke volume, which has now halved from 80 to 40 mils times heart rate, which is the number of beats in a minute. And so you have to have a mechanism to give you tachycardia or to increase your heart rate and that doubling of the heart. - And that's what the adrenaline does. - The adrenaline is the mechanism by which you can increase your heart rate and the nori adrenaline, which comes with that, increases the contractility and the vasoconstriction. It's a very rapid reflex that is detected by many different sensors, some of which are in the ventricle of the heart to self, it's a stretch receptor. But mostly in the barrel reflex, which are just two stretch receptors very sensitive in the carotid bulb here. So your carotid bulbs should be squeezing and opening like this with every heartbeat. And if the stroke volume suddenly reduces because you're standing, it suddenly doesn't go out like this. It goes out half as strong. And that stretch receptor fires off a neuron into the brain and says, "I'm bleeding out." Or, "I've got low volume." And the brain says, "Oh my goodness, you're bleeding out or you have low volume." Let's mobilize the thing that's needed to increase your cardiac output. And that means we'll shut down any bleeding, we'll vasoconstrict and we'll stop that flow. And that's why people might experience call hands, call feet, blue hands, reynosphenominin, all these vasoconstrictor effects are very helpful to shut down the periphery and the splanked system and push blood back into their heart so that the stroke volume can now increase from say 40 mils to 50 to 60 to 70. And then the reflex, your barrel reflex is now beating stronger and it dials down the adrenaline. Get it? So in the normal person who stands up who loses just eight mils, that adrenaline surge comes but it's not a surge, it's a little trickle. Your heart rate goes up by five to 10 points and that's enough to get your stroke volume up again and then your heart rate then decelerates. It's a very quick reflex circuit, that's super complex. - Just a couple of seconds. - A couple of seconds. So it's a very, very finely tuned, god created complex because we're such complex beings. But when it goes wrong, mainly because of pooling, or dehydration or inability for your lower limb and your splangly circulation to respond adequately to respond to the adrenaline that should be causing basal constriction, but it doesn't. That's when things go out of hand, and the people with autonomic dysfunction or orthostatic intolerance with reactive adrenergic surge have got this persistent low stroke volume, which then forces the adrenaline to maintain a very high level and it keeps elevating. So it's not a simple explanation, but it is an explanation. And if I were to make it even more nuance now, which may be confusing, but just stay with me. When you have a surge of adrenaline, what happens is that you vasoconstrict. And in a true kind of resonating system, you enhance your blood pressure. So patient with pots will often challenge me or challenge tilt findings to say, my blood pressure didn't drop. And it's true, the blood pressure does not drop because when you stand up, the stroke volume, which is the volume of each cardiac contraction, and the blood pressure, which is what you record on your upper arm cuff, is not the same. And the blood pressure is purely what you can record on that machine. The stroke volume is how much volume is ejected by the ventricle, the left ventricle, and the right ventricle in every single heartbeat. And the stroke volume is just dependent on blood flow. The blood pressure is also dependent on tension of the blood vessels. The more tense and constricted your blood vessels are the high, the blood pressure is. So here's the thing, when you stand up and you have a dump in your circulation and you have a surge in adrenaline, what happens is that your heart rate goes up, your vasoconstriction is maximal. And actually, as far as the pressure is concerned in the character, it better reflects, you've gone overboard because now it feels that tension from the vasoconstriction. And what it does is it then in the next cycle reduces the adrenaline. This causes the heart rate then to come down in the blood pressure to fall and the stroke volume to fall. And then 10 seconds later, as quickly as that, you get this bare reflex saying, hang on, it's too low, let's search the adrenaline. And you get this development of a yo-yoing oscillatory resonating frequency system that is way larger in amplitude than what should normally be the case. So it's repeatedly overcompensating essentially. Over under, over under. Trying to put it back in style. Try to put it back. And it can't reach that steady state equilibrium. So you know, with any device, a guitar string, you twang the guitar string and it vibrates maximally. But then it comes down. On a tennis record, you put a dampener. So you know, you hit the ball and it goes very, very oscillating. And then the dampener really, really shuts down so that the curve change, the morphology of the curve changes and comes down to zero or baseline very quickly. In an autostatic intolerance or potspacian, they resonate at this high amplitude blood pressure shifts and heart rate shifts for a long time. So 10 seconds after you stand up, if you're at pots, your heart rate might be 150. 20 seconds after you stand up, it might be 110. 30 seconds after it might be 145. 40 seconds after it might be 105. So it's that kind of oscillations that we're starting to recognise very clearly on tilt table testing, which we can quantify with frequency domain analysis. This is quite technical, but we want to see how the amplitude and the frequency changes, which tells us something about the system, the resonating frequency of the system that's not in a calibrated place. And is the answer, we probably need to take it back to the cause or what has gone on to create this, but is the answer in the short term to find a dampener? Is that the treatment for pots, the tennis racket dampener? Yes. So there's one way of thinking about it. The dampener is not a magic bullet. If those of you listening are thinking, oh, I've only I can get a dampener. And it's not it's not a for recess, it's not monoclonal antibody, it's not mid-adren, it's not fluteu-quadisson, it's not a vap, it's not any of these things. It's a multitude of things that gradually allow your autonomic system to not be so reactive and so so oscillating in the first instance. I think the fundamental baseline treatments would be lifestyle and conservative. And if I were giving advice to the to the general list, though, who hasn't seen any medical professional, the piece of advice would be buy a blood pressure monitor, upper arm cuff, something like an omron or an A and D machine. And you don't need to be fancy. It's 25 to 30 pounds. And if you buy a blood pressure cuff, then use your blood pressure in the upper arm, don't buy a four um blood pressure cuff. It needs to be upper arm with the correct cuff size. Lie down, take your blood pressure and stand up and take your blood pressure and learn to do a NASA lean test or an active stand test. And that is one way you can assess yourself every week or every fortnight to understand how much of a response you're getting to any treatment that you're having. And this is your very powerful self-healing tool or self-diagnosis tool to recognize when your heart rate oscillations or when your heart rate increase is starting to decrease. So the delta of your heart rate change when you're standing will start to decrease when you get better. Once you know what you're looking for, then any treatment that you do, you can you can assess and you can know that you're making a difference to the parameters that we would assess during till. And of course, ultimately moving away from that, you should know how you feel with the symptoms that you are experiencing when you do the treatments that are helpful for healing and the baseline would be salt and water. Yeah, in terms of the treatments, we need to look at some of the not necessarily the causes, but the things that exacerbate the symptoms. And one of the things that you have mentioned multiple times already is hydration. The impact of the different level of hydration, the one day your blood pressure can be fine on standing if you're sufficiently hydrated. And then another day, your blood pressure can be all over the place. You are simply talking about drinking and our water. Is that correct? Yes. And that would be generally two and a half to three litres. And it's amazing how many excuses we get with patients drinking one liter a day and saying, I don't feel better I'm drinking as much as I can. It's not enough. And the simple fact of hydration, how does that help? How does that stop the pooling? On stopthainting.com, if you click on the conditions page, phase of acle syncopy, there's a really nice illustration which tells you what's going on. So if you look up to stopthainting.com, if you go to conditions, which is the left hand tab, and then you go to phase of acle syncopy, the top left tile, you should see a diagram, black background, like a guy with a filled body. In the YouTube video. In the YouTube video, yeah. And then if you just forward to 26 seconds and pause it there. Okay, let's talk about why hydration works. So this is what happens when we're lying down or when we first stand up. And in a person with with pots, if you now click forward to two minutes, two or one, two or two. So can you see the brain in the heart, a half filled? Yeah. And can you see the legs and the splangnic bed are expanded? Yeah. And the blood pressure has now gone from the green, like 120 to the anvil, which is the top of the yellow. Yeah. So that's kind of 90 beats a minute. And the star's signified dissonance. What happens when you hydrate is actually your increasing slightly the plasma volume. And you're able to make the system more robust to fighting the gravitational changes. So instead of dropping and emptying your heart and your brain, it's more resistant to a full emptying. Now you could argue and I would make the argument on your behalf or ask you the challenging question, well, it's so easy. What do I just drink five liters? And the answer is you will just pee five liters. And your kidneys are very efficient at keeping your body homeostasis quite nicely. And those people who have suffered from a long term bed bound illness, let's say they have a very severe COVID illness or they get viral gastrocharitis or the man flu. And they then are bed bound for some time. They tend to lose volume. You tend to lose volume because you have this is a bit technical, but I'll try and keep it simple. Your kidneys are the main arbiter of how much volume and salt you keep. And your kidneys should be functioning in a normal person, assuming that you are a bipedal mammal, which means you have to fight gravity every day. We're not snakes or dogs. And because we are upright, we are giving ourselves orthostatic challenges every day. And the kidneys feel this. The kidneys will say, oh, we're upright. The blood pressure and the stroke volume is dropped a bit. Let me give you some gentle nudging to reabsop salt. So the reenin angiotensin aldosterone system, which is a neurohumeral system, which are mainly controlled at the level of the kidney, will secrete enough aldosterone to keep the salt reabsorption high enough. when you're upright all the time so that your blood pressure doesn't drop. And guess what? NASA has done experiments on orbiting astronauts. And if you orbit for 60 days, it turns out your body becomes a snake, physiology. Snake-like physiology. And if you just YouTube videos about NASA astronauts giving a press conference on the first day of landing, they all have pots, dissonus, and there are some funny ones that they're trying to maintain the speech. They get dizzy, they go starry, and then they fall to the floor. Because they've not had to maintain standing whilst they've been in orbit. Exactly. So they become snakes and you can't really stand. And so the plasma volume has dropped and it's been proven in, you know, NASA do very precise science. Of course, it takes lots of measurements. They have very healthy, able subjects. And it turns out that we can learn a lot from this kind of very detailed space physiology. And on my website, stopfainting.com, if you look at one of the treatment options, which is elevating the bed head that you can look up later on, I give you the full NASA paper, which actually documents a plasma volume drop by about 10 to 15%. So astronauts after 60 days can lose 15% of plasma volume. And that's saying for you, if you have five liters of blood, you've lost 15% of five liters. That's 750 mils. So you're down. And that means whenever you stand up, your body is more challenged. Now, it's the solution just to drink water. No, you have to have a bit of salt. And you have to be a little bit upright, even if it's set upright. And you have to start to work at restoring normal physiology. That's why the most challenging situation is when somebody's completely bed bound. And it's like a vicious circle and you understand why? Because as they stay more bed bound, the kidneys don't work to produce enough el-duster on to absorb more salt. And so they lose more salt because the body doesn't need much volume and salt and blood pressure when you're lying down. There's no need. And so it's a vicious cycle in a loop. It's interesting as well because there are other things that play into that. So there's the being bed bound, the deconditioning. And I have read actually the previous study that bed rest study. It impacts so many different systems of your body. I think a lot of people with these conditions are very resistant to being told that they're deconditioned. But it's not necessarily saying you've been lazy, but there are physical implications of not moving. In that vein, you mentioned the blood volume reduction. But one of the big things with long COVID, and I don't know if it's the same in other of these similar post-viral conditions, is the menstrual changes that have induced speaking personally. I lose a huge amount of blood. And the number of women with these conditions who are sort of between the age of 40 and 55 is huge. So you are compounding potential deconditioning or volume due to dehydration by actual blood loss in these conditions once a month. Is that something that you've seen impactful? It's volume. So you're losing a plasma volume. The chemoglobin concentration remains the same, but the volume, which is really what you need, is not there. And it's hugely impactful. It's hugely. And the volume is one component, as you said, but the muscular tone. And if you look at the diagram on syncopy, if you look at the low limbs, there's surrounded by huge muscles. You gluteal to quartz, your calves are all there. And when you stand up and walk, actually this muscle squeeze into the vein and pushes the blood up. That's why walking and movement can be much more helpful than standing still in a supermarket queue for patients with also starting intolerance. It's such an interesting thing to get over because people say, but I can't even stand. That's a problem. But if you can get them to stand enough to be able to walk, then there are benefits to that movement. And it doesn't need to be walking because walking introduces an element of exertion and energy expenditure. And then we have the whole mindful, which is post-exertional malaise, which, you know, we might not have the time to cover. But if we talk about just maneuvers, simple maneuvers, you can just point your toes to the ceiling. And you will activate the calves. You can just jiggle around or cross your legs. And you cross your legs hard. So you're pressing the back of one calf on the top of one shin or knee and you're pressing hard into it. And you're already returning half the volume of blood from that compressed leg into your heart. So this simple tips and maybe just never, never standing still always shuffling like Muhammad Ali just moving back and forth or just crossing your legs and shuffling back and forth when you're chopping the vegetables on a kitchen table. That constant movement that constant up and down of your toes and crossing your legs may be very helpful in just giving you that additional boost to use your calves and your legs as a second pump, which is what it's considered to be. That is brilliant. I've spoken to quite a lot of people about pods. And I've never had that very simple piece of advice that even when you're still sitting, you could potentially be flexing. Yeah. So I often say to patients get a, you know, a cheap stool that, you know, you would give your foyer all who's learning to get to the toilet to stand up, put it underneath your desk and just keep putting your legs on the stool. Yeah, just doing steps and the stool like it's a very light exercise, but it gets your blood pumping and prevent a blood pooling in your in your lower limbs. And you know, it's such an easy thing that that most people who are returning to work or who are doing desk space work like you here doing this webinar are able to do without anyone even seeing that they're continuing to exercise in that way. You deal obviously a lot with long cave in the current situation. Do you consider long cave to be different from other post viral conditions or when we talk about long cave it, are we also talking about the symptom of told you of MECFS chronic lime and those other post viral post infection conditions. Do they have the same impacts in terms of autonomic dysfunction as the long cave. Yeah, the short answer is yes, I think I think they do. And when I just want to qualify that very briefly by saying in long COVID, I'm not talking about people who've had 70% of the lungs wiped out with a severe immunitis. I'm not talking about people who've had brain changes or nervous system changes that you can detect on scans. I'm talking about people who have got a series or rough on normal tests. But who still continue to suffer and this is the ever elusive one right this is the missing the elephant right because all are describing normal findings. And and when they say goodbye, everything's normal. Every time the patient hears that they're hearing is it my mind is it my mind because this is normal is it my because I'm really having those symptoms doctor. I'm really, really having bad abdominal cramps, but your endoscopy is normal. You've got transit is normal. Everything is normal. But but I feel this well, I can't help you goodbye. So they might hear that it's up here. And that's that's really feeds into the kind of anxiety and tension as well. We need more of a holistic approach and the question about how to solve this is it's difficult. People go, oh, I'm going to see a cardiologist. There's suddenly this expectation that there's something authoritarian about the way that they're spoken to. Yeah, the it's so interesting. The style has changed. And like the great Luz is saying the more I know the more I study the less I know or something like that. And so I'm completely humbled by by my patients and the experience of healing or lack of healing. And actually with that insight has come a lot more courage to say the things that other people don't want to say or explore because part of the healing is an education and understanding into the multifaceted nature of what what are the triggers and some of the triggers are easy for patients to hear like viral persistence or plots. Some of it is very difficult to hear like what happened to you in childhood or why you are type a and why you need to juggle five things and why you still need to be doing interviewing on a daily basis chasing up doctors. When you should be sleeping or meditating and these kind of discussions are very challenging because patients say what you're attacking my personality my way of life. And but there is a there is a way to get into a certain kind of patients and then there is a way to never get into them without you yourself running into burnout because of the aggression you get back. And you know I've learned that the world is a mirror and your environment is mirror to yourself so if you go and see a doctor and every other doctor you've seen the first thing you say when you come into my clinic is that this doctor is shit that doctors crap. This one didn't do anything for me this one just dismiss me and that one's call me anxious and mad. I know I'm off to a bad start because they will leave my clinic and probably say the same thing about me because you've got so much work to make up for the people that have proceeded. No no no no no no no it's because as we're in so without so as their own personality and their own vibe and and energy comes into the room in that way which is quite aggressive and give me a magic pill to fix me because all be one can only help you know that princess layers say. that Princess Lea is saying. help me over you and can over you. And then they don't get it. They don't get the blue light saber or the magic red pill to like walk them out of this. And then they get very angry and they get very angry email afterwards. So part of the preservation of my own team and myself is to recognize who I can't help. That's also important. I think one of those major things with these conditions is people want to be able to go into your office and take that pill, that magic bullet, walk away and be healed. And I think that what many people are unable to recognise is that whilst this illness or whatever their condition might be might seem that it developed very quickly, you can't rush out of it and that healing process requires work on their part, which I know is incredibly difficult when you're feeling absolutely awful and shattered and you're then told but you need to do this, this, this. It needs to be approached holistically so from looking at the body and the mind together. And there are no quick fixes. And I think that that is one of the major problems that you face with everyone that walks into your office is that these conditions have been going on a long time and people are so done with them that they want that magic bullet, they want you to come up with with something. And that's with so many of these conditions when people say, well, there are no treatments, there are there's there's no cure. I think that we are saying more and more that there are various treatments across various structures of the body or different types of treatment that can contribute to healing. And I believe that you have seen people fully recover from some of these conditions. Yes, yes, that's right. My question to you is you are also a sufferer of long COVID, right? And I guess part of what I'm seeing is champions who come out into the space to try and help other people. And I suppose you're one of those angels that have come out because you want to share with your skillset that you have how to help more people around you. Is that part of that drive? Yeah, absolutely. That's what it is. So I found getting ill, incredibly frustrating. And I'm very much a doer. I'm sure that you see that a lot of the time I like to be pragmatic and work out how I can fix things or how I'm a problem solver. So obviously I had to balance that with the fact that I was very sick. But what I wanted to do, I don't know how to say politely, my whole thing is that I want to turn shit to gold. So find the positive or the benefits in the situation that I'm going through. And actually what I found is that by being able to access people such as you, I was getting this knowledge that I was able to interpret. I certainly don't necessarily understand at all. I'm not a trained medical professional. But I was able to interpret and my job as a journalist of interpreting things and remodeling them to be able to be comprehensible to everyone. I felt that that was something that was useful and that I guess maybe I could be of service in some way. But yeah, there are these amazing champions in this space who are going out there for patient advocacy. And I really feel that there's a big positive to have come from a lot of these conditions in terms of the patients rising up and working with the medical profession. I've so, so enjoyed working with the doctors. And there are people who have actually made such a massive change in terms of having that lived experience. Thank you Dr. Boone Lim. You're welcome. Thank you for listening to Make Visible. Please do like, follow or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com. (gentle music)