How heart rate and symptoms are connected

Emily Kate Stephens (0:42): 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 feed back. We are trying to build something for you. This week I had the pleasure of talking to Dr Boon Lim, eminent cardiologist and lauded electrophysiologist 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 Syncope Diagnostic Service, based at Hammersmith Hospital in London. He's an expert in vasovagal syncope 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 ME/CFS, Lyme disease, Long Covid, in autoimmune disorders. It's also associated with neuropathy, with diabetes; its reach is huge. And its diagnosis and treatment is often challenging, as discussed here in today's interview with Dr Boon Lim. Dr Boon 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 Boon Lim will discuss his holistic approach to healing, breathwork and stress management. If you enjoy this episode, please review, comment, get in touch with us by 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 Boon 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 a technically competent and brilliant electrician of the heart, Dr Boon Lim approaches 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.

Emily Kate Stephens (4:15): A cardiologist and an electrophysiologist. 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?

Boon Lim (4:47): 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 Focused cardiologist or an electrophysiologist, I'm an 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 Syncope unit. Syncope is a term that means fainting, and as part of syncope, 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 tachycardia syndrome, which I was quite familiar with, and was making diagnoses on tilting and helping patients along, Covid just led to an explosion of patients who had either got POTS. The term postural orthostatic tachycardia 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 in syndrome, it does what it says on the 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, shortness of breath, chest pain, palpitations, lightheadedness, nausea, feeling hot and bothered. Then you have the startings of a diagnosis of orthostatic 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 a 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 effect, 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, lightheaded, shortness of breath with chest pain, and 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 viewers 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.

Emily Kate Stephens (8:29): But what's quite interesting about that is that the tilt table test plus the symptomatology 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 fulfil 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?

Boon Lim (9:14): I don't know the answer to that question. To be honest, I've never considered a failure just because your echocardiogram showed like you've got a bit of mitral valve prolapse. It's not a fail or pass. It might be a fail or pass for the person doing the test if we don't meet the stringent criteria. But certainly, I don't want a patient to ever feel that they failed or passed. I mean, it's such a negative judgement, 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 as 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 label so strongly given POTS or not? So when I discuss with patients, I come away from labelling 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 a starter that is set for success because when they take time to listen to you and your explanation about what happens to create these symptoms, and what happens when your heart rate oscillates and may or may not reach that magic threshold that some group of people sat round a table and decided, oh, it should be 30 beats per minute because it's easy around the arbitrary threshold. It's an arbitrary threshold, like with all things in medicine and science, we need to define cutoff 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 an understanding to healing, yeah, about how to heal. I think it's very useful.

Emily Kate Stephens (11:28): 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 grey 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.

Boon Lim (12:35): I think everything you said is very valid, and oftentimes you have to make a call, and you have to read the energy or 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 you know 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 POTS because yeah because their heart rate on that day when they were fairly hydrated, they had a good night's sleep, they were not stressed. For during the tilt table test was just 25 beats per minute, right? And so that's not their 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, and if 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 their feet, you typically get a slight drop in cardiac output because the blood shifts with 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 and even with me, I don't have POTS, but on certain days when it's very hot, I'm dehydrated. I can stand up and go a bit woozy. I know my heart rate shoots up, and then I steady myself. I flex the muscles in my lower limbs to do a kind of isometric exercise.

Emily Kate Stephens (14:50): Is that something you consciously do, or is that what our body naturally does?

Boon Lim (14:54): 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 transient lightheadedness 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 splanchnic bed. And this is something people don't often talk about or think about. The splanchnic 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, the gut has villi and microvilli, all these fronds to increase the surface area for absorption, just like in your lungs, you've got these alveoli, the sacs to exchange oxygen. And the gut is very similar because 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 microns wide. I think 12 microns each capillary can only take one blood cell at a time to maximise 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 pool a lot of blood in your splanchnic bed, which is why patients often feel worst after a large meal in a hot, stuffy restaurant with a glass of wine, which vasodilates your skin and in your splanchnic area, and then you stand up because you're feeling hot and bothered, and you want to catch some fresh air or go to the bathroom, and that's when patients have a different condition called vasovagal syncope or fainting. But that's when they have the maximum tension in a 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 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 splanchnic 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-that's what the adrenaline does. The adrenaline is the mechanism by which you can increase your heart rate and the noradrenaline, 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 itself. It's a stretch receptor, but mostly in the baroreflex, 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 mobilise 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 blood flow, and that's why people might experience cold hands, cold feet, blue hands, Raynaud’s phenomenon. All these vasoconstrictor effects are very helpful to shut down the periphery and the splanchnic system and push blood back into the heart, so that the stroke volume can now increase from say 40 mils to 50 to 60 to 70, and then the reflex, your baroreflex 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.

Emily Kate Stephens (19:47): Just a couple of seconds.

Boon Lim (19:48): 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 splanchnic circulation to respond adequately to respond to the adrenaline that should be causing vasoconstriction 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 nuanced 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, patients with POTS will often challenge me, or challenge the 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 higher 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 carotid baroreflex, 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 and the blood pressure to fall and the stroke volume to fall, and then 10 seconds later, as quickly as that, you get this baroreflex saying, "Hang on, it's too low. Let's surge 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.

Emily Kate Stephens (22:31): So it's repeatedly overcompensating?

Boon Lim (22:34): Essentially over, under, over, under, trying to put it back in balance, trying 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 racket, 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 the curve change, the morphology of the curve changes and comes down to zero or baseline very quickly. In an orthostatic intolerance or POTS patient, 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 had POTS, your heart rate might be 150. 20 seconds after you stand up, it might be 110. 30 seconds after, it might be 145.

Boon Lim (23:28): 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.

Emily Kate Stephens (23:55): 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.

Boon Lim (24:14): So there's one way of thinking about it. The dampener is not a magic bullet. If those of you listening are thinking, "Oh, if only I can get a dampener, And it's not apheresis, it's not monoclonal antibody, it's not midodrine, it's not fludrocortisone, it's not ivabradine, it's not any of these things. It's a multitude of things that gradually allow your autonomic nervous system to not be so reactive and 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 general listener 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&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 forearm 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 recognise 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 assess and you can know that you're making a difference to the parameters that we would assess during tilt. 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.

Emily Kate Stephens (26:16): 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 those that you have mentioned multiple times already is hydration. The impact of the different level of hydration. Say one day your blood pressure can be fine on standing if you are sufficiently hydrated, and then another day your blood pressure can be all over the place. You are simply talking about drinking enough water. Is that correct?

Boon Lim (26:46): 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 litre a day, and saying I don't feel better, I'm drinking as much as I can. It's not enough.

Emily Kate Stephens (27:02): And the simple fact of hydration-how does that help? How does that stop the pooling?

Boon Lim (27:08): On stopfainting.com, if you click on the conditions page, vasovagal syncope, there's a really nice illustration which tells you what's going on. So if you look up stopfainting.com, if you go to conditions, which is the left hand tab, and then you go to vasovagal syncope, the top left tile. Yeah, 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 POTS, if you now click forward to two minutes, 2:01, 2:02. So can you see the brain and the heart are half filled, yeah. And can you see the legs and the splanchnic bed are expanded, yeah. And the blood pressure has now gone from the green, like 120, to the amber, which is almost the top of the yellow, yeah. Yeah, so that's kind of 90 beats a minute, and the stars signify dizziness. What happens when you hydrate is actually you're 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. Why don't I just drink five litres? And the answer is, you will just pee five litres, 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 gastroenteritis 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, "Oof, we're upright. The blood pressure and the stroke volume has dropped a bit. Let me give you some gentle nudging to reabsorb salt. So the renin-angiotensin aldosterone system, which is a neurohumoral 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. Now, 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, dizziness, and there are some funny ones that they're trying to maintain the speech. They get dizzy, they go star, 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 their plasma volume has dropped, and it's been proven in you know NASA do very precise science. Of course, they take 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 litres of blood, yep, you've lost 15% of five litres. That's 750 mils. So you're down. Yeah, and that means whenever you stand up, your body is more challenged. Now, is the solution just to drink water? No, you have to have a bit of salt. You have to be a little bit upright, even if it's sat 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 aldosterone 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.

Emily Kate Stephens (32:10): 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 previously that bed rest study that 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 are 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?

Boon Lim (33:16): It's volume. So you're losing your plasma volume. The haemoglobin 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 you know the volume is one component, as you said, but the muscular tone. And if you look at the diagram on syncope, if you look at the lower limbs, they're surrounded by huge muscles. Your gluteal, your quads, your calves are all there. And when you stand up and walk, actually, these muscles 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 orthostatic intolerance.

Emily Kate Stephens (33:55): 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.

Boon Lim (34:08): Yep. And it doesn't need to be walking because walking introduces an element of exertion and energy expenditure, and then we have the whole minefield, which is post-exertional malaise, which you know we might not have the time to cover. But if we talk about just manoeuvres, simple manoeuvres, 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 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 the 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.

Emily Kate Stephens (35:11): That is brilliant. I've spoken to quite a lot of people about POTS, and I've never had that very simple piece of advice that even whilst you're sitting you could potentially be flexing.

Boon Lim (35:22): Yeah, so I often say to patients get a you know a cheap stool that you know you would give your four year old 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 like doing steps. Yeah, just doing steps on the stool. Like it's a very light exercise, but it gets your blood pumping and prevents the blood pooling in your lower limbs. And you know, it's such an easy thing that most people who are returning to work or who are doing desk-based work, like you here doing this webinar, are able to do without anyone even seeing that they're continuing to exercise in that way, Emily Kate Stephens you deal obviously a lot with Long Covid in the current situation. Do you consider Long Covid to be different from other post-viral conditions? Or when we talk about Long Covid, are we also talking about the symptomatology of ME/CFS, chronic Lyme, and those other post viral, post infection conditions, do they have the same impacts in terms of autonomic dysfunction as for Long Covid? Yeah, the short answer is yes. 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 their lungs wiped out with a severe pneumonitis. 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 raft of 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 when they say goodbye, everything is normal. Every time the patient hears that, they're hearing. Is it my mind? Is it my mind? Because this is normal. Is it because I'm really having those symptoms, doctor? I'm really, really having bad abdominal cramps. Ah, but your endoscopy is normal, your gut transit is normal. Everything is normal. But I feel this. Well, I can't help you. Goodbye. So they might hear that it's up here, and that 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.

Emily Kate Stephens (37:47): When 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.

Boon Lim (37:55): Yeah, the it's so interesting. The style has changed, and like the great Lao Tzu saying, "The more I know, the more I study, the less I know, or something like that. And so, I'm completely humbled 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 are the triggers, and some of the triggers are easy for patients to hear, like viral persistence or clots. 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." But there is a way to get into a certain kind of patient, 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 doctor is crap, this one didn't do anything for me, this one just dismissed me, and that one's called 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.

Emily Kate Stephens (39:36): Because you've got so much work to make up for the people that have preceded.

Boon Lim (39:40): No, no, no, no, no, no, no. It's because as within, so without. So as their own personality and their own vibe and energy comes into the room In that way, which is quite aggressive and give me a magic pill to fix me. Because Obi-Wan Kenobi, you're my only hope. You know that Princess Leia saying, "Help me, Obi-Wan Kenobi. And then they don't get it. They don't get the blue lightsaber 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 recognise who I can't help. That's also important.

Emily Kate Stephens (40:19): 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. 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 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 something, and that's with so many of these conditions. When people say, "Well, there are no treatments. There are there's no cure. I think that we are seeing 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.

Boon Lim (41:56): 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 skill set that you have, how to help more people around you is that part of that drive?

Emily Kate Stephens (42:21): 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 it all. I'm not a trained medical professional, but I was able to interpret, and my job as a journalist of interpreting things and remodelling them to be able to be comprehensible to everyone. I felt 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.

Emily Kate Stephens (43:54): Thank you, Dr Boon Lim.

Boon Lim (43:56): You're welcome.

Emily Kate Stephens (44:06): 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.

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