How our understanding of ME/CFS, fatigue and pain has progressed over the past decade

Emily Kate Stephens (0:10): This week, we are bringing you the second part of my conversation with Dr Boon Lim, cardiologist and electrophysiologist who was on the show in episode two. Many of you fed back and said you wanted to hear the rest of this conversation as soon as possible, which takes a broader look at some of the holistic approaches that we might take to alleviate symptoms in conditions such as Long Covid. In this episode we discuss breathing and adjusting our mental load and state to try and find that homeostasis. We respect that everyone's illness and path to improvement take different forms and caveat each of our interviews with the knowledge that this is that expert's opinion, research or experience. It's not intended as direct medical advice tailored to your condition, so it's for you to adopt or ignore as appropriate. It's particularly pertinent in these conditions to carefully consider whether ideas presented either by our guests or indeed from any healthcare provider would induce post exertional malaise or exacerbate your symptom set. As ever, please do comment, review and write to us, letting us know whether what Dr Lim says resonates with you. We're interested to hear your experience and learn what has worked for you. Before talking about some of the root or what has actually driven this autonomic dysfunction, whilst we are talking about therapeutics, water, salt, movement, I would really, really like to talk to you about two of the other things that you really, really advocate for your patients, that sort of go together: mental stress management and breathing. They seem to be two of your biggest things in your toolbox.

Boon Lim (3:01): Yeah, can you indulge me with like, five minutes of a qualifying statement before we go there?

Emily Kate Stephens (3:09): Absolutely.

Boon Lim (3:10): And I think it's very important to know that where we are in this era living the Parable of the Six Blind Men of Indostan - and I don't know if you've heard of this parable - but Six Blind Men of Indostan by John Godfrey Saxe. Google it. It's a beautiful poem that describes blind men who are asked to describe an elephant, and the person who approaches its tusk says the elephant is like a spear. The one who touches its tail says the elephant is a rope, and the one who touches the side says the elephant is a wall, and so on and so forth. Now the point I'm trying to make here is that when you see an 'ologist' who is generally a very, very blind specialist, including me, what you're asking is there a problem with my heart? And the ologist does a whole host of tests, and eventually finds, yeah, you're a bit tachycardic, your blood pressure is low, but then you go and see a gastroenterologist - it's probably my gut, because, you know, I've got reflux, I've got a lot of gas. And it's not just going a lot, it's constipation alternating with diarrhea. And the gastroenterologist does a whole host of tests, and he says, nothing really wrong, but have some probiotics. And then you can see rheumatologist. Oh my God, my joints ache. I'm so tired all the time. And they'll do a lot of tests and say you've got some post exertional malaise, but right, all your antibodies, some of them are mildly positive, but.. Not sure. You see a dermatologist, you see a women's specialist, and we're all blind because we don't see these things.

Emily Kate Stephens (4:44): You're listing all of the people that I've seen!

Boon Lim (4:47): Oh, sure, but you know, because I see this all the time, and none of these people really, including me, they don't really get it because they don't see the elephant. And the second analogy to bring into the equation that if you don't see somebody who can see a holistic view, or this, see your illness as a whole, and see marvel in the true beauty of the elephant rather than the elephant parts, you'll never really truly get to source. And when I think about it a different way, and using the example of, let's say we go down the anti-coagulation route, or we go down the plasma apheresis route. Think of a factory up top, upstream right, which is producing lots of gunk: adrenaline, inflammation, cortisol, spike protein, lack of clearance, viral debris. And it's all coming downstream, and then it branches into its tributaries, including heart system, the heart tributary, which gives you palpitations. So you might, you know sensibly as a cardiologist, not really knowing very much about autonomic dysfunction, say, ah, palpitations give beta blockers, but beta blockers are awful for those patients with low blood pressures, because they lower the blood pressure further. The patient thinks, oh, this cardiologist knows that I've got a tachycardia is a problem. It's not a tachycardia. A tachycardia is a response to something upstream. So treatment of the tachycardia with a drug may not be the right thing to do, just like treatment to try and push a net out to catch all the toxins or the stuff that are coming down this tributary, which is the immune tributary, like spinning your blood and taking stuff out, means that fine, for that tributary, you get rid of the blood, the toxins, or the crap that are coming from the factory. But if you don't stop the factory, what's going to happen in two weeks, in six months? The same again. So the question is not, how do I treat my tachycardia, Doctor, or how do I treat my IBS or my bloating? The question is, how do I identify what the source of all these things are? Here is where I come back to the question you asked me, like the value of breathing and the mental state, those are only two components. But if we go back to the factory, it's got a major switch. And the way I sometimes now start to draw it, is that I draw a yin yang symbol, which is the black and white with an S in the middle. And what I say to patients that you, once upon a time, would have been born with a fully balanced yin and yang. That means, in the daytime, shift more towards Yang or masculine or energetic, or, you know, doing, and then in the night time you need to rest and normalise that Yin. Do you have a sense of general balance, which balances your immunity, balances your heart rate, balances your response to infection, so that you don't get repeated infections again and again?

Emily Kate Stephens (7:38): Is that sympathetic and parasympathetic nervous system either side of the Yin Yang?

Boon Lim (7:43): Yeah, so Yang is sympathetic, adrenaline. Yin is vagus, or rest and digest and rejuvenate. And what I find is, if you put it in this context, and you say, what are the determinants of yin yang balance, that's when you get more to the root cause, some listeners will be quite agitated by the narrative, because they'll say, I was in balance until I got this damn Covid, and Covid was the disrupter of my yin yang. So you must fix Covid, or you must fix whatever viral debris, because the fixation is on a trigger that caused the imbalance. In my experience, there are, like, millions of people who get Covid. It's a fraction of them who have Long Covid, and there is a phenotype, or there is a type of patients who are more susceptible to getting Long Covid than others.

Emily Kate Stephens (8:33): Tell me what they are.

Boon Lim (8:35): Tell you what they are. So this is a generalization and quite broad, but the typical person I see, as you've identified, are women than men. Okay, more women who are juggling a few things, and we often don't say it or see it enough. But I love you, mom, because of everything you've done. And as a mother, two or three kids juggling, school, house, and actually, if those parents also need to work to kind of sustain the household income - that's a mother with three jobs, because recovering from an illness is a job in itself. So kids, household chores, job, or two or three - is what shifts your autonomic nervous system state into a predominant Yang state. If you think about now a third analogy, and I'd like to bring this all together with this last analogy. This is not your proverbial gazelle grazing in a savannah. Lion comes out of long grass, and then you're maximizing your adrenaline. Your capillary dilatation is maximum. Your heart is beating very fast. And you're breathing quickly, so you can maximise oxygen consumption and flow of blood to your organs, your muscles, so you can run for your life. And this is not that. But in that situation where you have an acute stress, you shut down digestion, you shut down reproduction. Who'd want to reproduce, and when you're running for your life. This is not that. This is the analogy of a gazelle whose sister was just killed by a lion a week ago in a radius of long grass, let's say, 20 meters, you're rooted in the middle, and you don't know when the lion is going to get hungry again. You occasionally see a swish of a tail, in the north, south, east or west. You can't travel and you can't run because you don't know where the lion is. This unknown roots you in a state of chronic Yang or adrenaline. In that chronic state, ground down, why would anyone prepare for reproduction. Why would anyone have normal physiology? The menses go haywire. Some people get peri or, you know, advanced, or have perimenopause symptoms which are not in keeping with the age. People don't sleep well. Will have brain fog and fatigue because you're constantly on high, just like if you were studying for exams and you didn't sleep for three nights on the trot. This is not resting. Maybe you sleep, but you don't rest, because the lion is in long grass. What are the lions? The lions are your financial future, your career, on the line... When am I going to go back to work Dr Lim? Tell me, is it three months? Is it two weeks? I need to plan. I need to plan. My kids - I'm not spending enough time with my kids because I'm recovering. I feel guilty because I can't bring them to school. I can't teach them. These are other preceding factors in my mind that perpetuate the factory and the factory switch, actually, the On switch is this state of perpetual blackness. With the Yin Yang symbol, Yang is black. You're shifted into like a three quarters black state, chronically. Even when you rest and you wake up in the morning, first thing you do is you think of all these thoughts that come in. You're already shifted in black and black, or Yang state living, or adrenaline state living is a very, very energetically consuming state.

Emily Kate Stephens (12:05): So it's essentially creating even more of a spiral as well?

Boon Lim (12:09): It's an absolute spiral, and people who actually don't or are unable to, or feel unable to, change life circumstances, you can't get rid of your kids just because you have Covid, right? You can't let the house be full of dust. You can't stop working. So how does that work? It's an extreme stress, but it's an extreme stress over a chronic period that sets your immunity up. And you know, going back to the gazelle analogy, when you're running acutely, you want your mast cells and your white cells and your NK cells and all your immune cells to be very reactive, so that if the lion manages a scratch, you can dump platelets to heal that scratch. You can bring in your mast cells to activate histamines to really mobilise your immune system to that spot to heal. If you're not getting a scratch and you're just sat down, grounded, and your immune cells are really, really still waiting for action, but they don't see any.. What some of them will trickle into an autoimmune state. Right? Explains why there is a high prevalence, or high normal prevalence, of any 'itis' that you might find gastroenteritis, arthritis, pneumonitis, myocarditis, all these things that inflame. And you might see a group of patients who have flushing and who have mast cell activation, who are helped by antihistamines. That's part of the being in chronic stress state,

Emily Kate Stephens (13:41): And that's like a hyper activation of all of those systems?

Boon Lim (13:45): All of your immunity is very reactive, and they become so reactive held in that ready to attack state that your immune system doesn't have the ability to regulate and sleep and rest to become more effective, and over time, immunity is impaired, which is why patients get infections after infections. Despite sleeping in bed or being bed bound all day. It's one of the paradoxes - I'm resting all the time, not doing very much, and yet I'm getting infections, which then set me back so much. So, you know, I think those three examples, or the analogies I've given can be very helpful in allowing people to understand what the kind of driving forces are, and the reset, which comes most quickly, in my view, is a physiological enforced reset and of all the elements of autonomic control, and you'll be aware that the autonomic nervous system is that bit of the brain that controls all the automatic functions of the body: digestion, peristalsis, dilatation of your pupils, skin dilatation, sweating, tachycardia, blood pressure regulation, heart rate regulation. Now, of all those things, if I said to you, Emily, can you increase your heart rate by 10 beats a minute now by thinking - you can't. If I say, can you make a pupil dilate - you can't. If I say, can you control your breathing rate? Ah, you can. So the breath is a unique place - the control of respiration is a very, very unique dual control system. If you're not conscious, it's controlled by your autonomic nervous system. You see this breath pattern, and I see it straight away. A patient comes to my room and they go (sighing). Sighing breath is called a reset breath. If you Google Andrew Huberman, physiological sigh. He's a Stanford neurobiologist. It's interesting. He talks about taking a deep breath in like this (inhales), and then a next one (inhales), and then (exhales). It's a double breath in, maximum capacity, and then a slow prolonged exhale with a sigh. And we see this all the time during Tilt Table testing. When people are getting dialed up with adrenaline, the oscillations are going like that. They go, (inhales, sighs). If they don't do that they might go (inhales, sighs). They have this sighing pattern. The sighing pattern is trying to reset the Yin Yang. It's trying to shift them to vagus. Now I say, why not we use the power of breath to actually regulate upwards, because the autonomic nervous system has outputs, which is where we suffer the manifest effects of high adrenaline, but it also has inputs so you can regulate it by slowing down the breath. And when you slow down the breath, your heart rate slows down too. And I do demonstrations. I do demos with patients, where I put on a monitor on my ear, then I put it on the patient's ear. I get them to breathe in and out, and I get them to see the oscillations in their heart rate just with controlling the breath. And overall, the reduction in the mean heart rate when they slow and regulate the breathing. The breathing should really be regular, ie, ideally, six seconds in, six seconds out. That's the perfect physiological breath, as per James Nestor in his excellent book, Breath.

Emily Kate Stephens (17:05): Oh, I love that book.

Boon Lim (17:04): That book is amazing. And he takes it back to ancient times where monks would meditate on a rosary, and the time it takes to do one revolution of the rosary is six seconds in and six seconds out or five and a half. But you know who's counting half a second? For me, it's eight seconds. So I like an eight second cadence, because it just works for me. But for most patients, you should try and start with a six in six out. It should generally... The most important bit about that is the rate of change of oxygen - so it's not a (gasps) then you taking very little at the end. It's a slow I (inhales), through the diaphragm, you push your belly out on the breath in and touch your navel to the spine on the breath out. It should be regular, deep, if you can, rhythmic. And those are the key principles of breath work. And if you practice 10 minutes when you wake up, instead of checking your phone - don't check your phone, don't check your email, don't look at blue light when you wake up. That's another top tip to stop you switching immediately into Yang, the Yin Yang shifting. In fact start with a breath, if you're prescribed midodrine, start with midodrine, a glass of water, 400 mils, and then do 10 minutes of meditation because that sets your mind up in this very, very healthy space, because you are training the vagus and already shifting your yin yang towards more Yin with this simple 10 minutes of breath work exercise. You are choosing to alter your physiology to be more conducive to healing on that day. And then if you couple that, and this is for extra brownie points, which I recommend everyone do with one gratitude exercise, which is - I'm grateful I've got a warm bed or duvet. I'm grateful I've got a kid. I'm grateful I've got family, my mom's looking after me. Whatever it is you're grateful for. Instead of saying shit, I can't get to work again today because I feel I can't stand, change it and express gratitude. That is a real shifting state to be in, and then express one other thing - what am I good at? Because there is something that you will find that you're able to express a positive about yourself. And if you have one gratitude, or two or three pieces of gratitude, you have one or two or three pieces of expressing what you're good at. You're setting yourself up at the beginning of the day, and do it three times a day, middle of the day, after lunch, before lunch, and then once before you sleep. We're really recalibrating this kind of yin yang to be more Yin-wards. So that's the power of breath and intention.

Emily Kate Stephens (19:47): And mindfulness, which I think possibly one of the big reasons that we've had this huge impact at this point of the world from Covid is because we are so distracted all of the time, and even our recovery from these things is rushed, and it's in our phones, and it's to high level of stress, and bringing it back to that simple breath and mindfulness and being present, and also, I think, with the gratitude 'What am I good at?' it's coming to some kind of acceptance, rather than fighting against. It is instrumental in the healing.

Boon Lim (20:27): So acceptance and the phrase which I like to use is an 'expectation gap' management is, are two phrases that sometimes are difficult for patients to manage. And I consider acceptance as a present moment exercise, because the moment you accept yourself, of who you are, warts and all can be a very grounding, present moment experience, and it's, the expectation gap reduces. So the expectation gap is when you expect that you're going to be able to do a full day's work, a full day of work, in the day ahead, and then you can't do it. And then you feel so anxious about the fact that you haven't been able to do what you expected yourself to do, or if I'm able to go back to work in three months and look, I can't do anything now, you are actually rooting yourself in the future moment, anxiety the future hasn't even arrived, and you're stressing about that, and all the time you're thinking about that gap, you are shifting towards Yang. Present moment awareness is - it's very challenging, because you've got all these things you have to do, like get the kids to school and the household bills and jobs, but whatever it is you do at any one time, you just give your time and attention to the task at hand. That is part of the kind of gift of the present moment that you ground yourself in the present moment, and you're not worried about an anxiety about the future, and you're not worried about something that happened in the past. And that is a way also to shift into more balanced autonomic nervous system states.

Emily Kate Stephens (22:06): And sometimes that present moment is not particularly pleasant. It's not that you're absorbed in playing with your children

Boon Lim (22:08): Of course

Emily Kate Stephens (22:15): Sometimes it's because you're stuck in bed and you're in intense pain and you feel utterly dejected about the world. But the presence and acceptance in that is actually hugely freeing. Because rather than saying, Oh, why am I like this? This is such a terrible situation, I should be doing X, Y and Z, you just let it go and you say, it's my situation. I'm in pain. I'm going to rest now just be with it. I was actually, and still am, part of a programme, actually by Imperial, which is the Long Covid clinic at St Mary's. They offered for the Long Covid clinic mindfulness classes. And there was, I think a lot of people would find that really offensive, that's saying you can go and cure this by some kind of mental activity, but I say that it's been absolutely instrumental in me. I wouldn't ever say that I've recovered, but me getting incrementally better has been the mindfulness meditation. And I do a huge amount of breath work and yoga to try and balance it. And so I can say, from personal experience, they are hugely effective. But this acceptance and not constantly fighting the illness, fighting the condition, it's not a resignation that you're always going to be like this or giving up, but it's simply being.

Boon Lim (23:45): Yeah, so there's a really nice story that Suzy Bolt tells on her programme, and it's when, I think, she has a brand new kind of water and windproof jacket going.. She lives in Brighton, and so she goes for a walk on the beach. It starts raining with horizontal sheets, and it's quite chilly, and her jeans get completely soaked through, and she's dripping into her boots, which are freezing, and she's thinking crap, like this is so uncomfortable, it's so painful, I'm so cold. And then something shifts her mind, and she says, Actually, my upper body is completely warm and toasty. I'm so grateful I've got this nice, warm jacket, which is keeping me warm, and you know, the hood is keeping my face dry. It's also in shifting focus, right? And that is where thinking of something you're good at, or being grateful for what you have rather than for what you don't have, or focusing on what you don't have, or the illness or the pain. It's a very helpful mental shift, very helpful, and just that shift enables you even in the face of a lot of pain or tension, I.e. My lower limbs and my jeans are soaked in icy cold weather. It doesn't make the cold less bad, but when you shift in your other half of the body, which is doing fine, or the other aspects of your life which are still good supportive, like lovely kids, or, you know, your boss has been very supportive, and giving you time off, right. Shifting that perspective is one way to shift towards more autonomic balance as well. And, you know, I always bring it back to autonomic balance. And maybe that's not the narrative for the factory. We talk about the factory spilling out stuff, but certainly for me, it's the most helpful way that I can think of the 'off switch'. And the off switch is actually regulating that Yin Yang symbol and bringing it back to balance. That, for me, is the off switch because the Yin Yang symbol is so nebulous and describes, or you can understand the multi faceted inputs into yin yang that it's no longer offensive to think mindfulness, because we know that when you're not mindful and when you're stressed, you activate the Yang. You also know if you're dehydrated, you activate the Yang, because when you stand up, you have what we call orthostatic stress. You can't help having a high amount of adrenaline when you stand up if you're dehydrated. You also know when you're in the throes of an infection, you will have the stress related to the infection. And of course, you know if you're in pain, you'll have stress related to the pain. So pain relief can be helpful in regulating yin yang. Breathing and mindfulness and controlling infection, all these things are switches, right? Like we can think about it in a more multi faceted input setting, because I think we understand how it creates outputs. Inputs, which is the root cause into the Yin Yang imbalance is what we need to really get out there. And it may be different for different people.

Emily Kate Stephens (26:48): So fascinating, isn't it? Because other than saying, I have to work out what caused it and removed that from my system, like you mentioned, the viral persistence, or maybe it's driven you into autoimmunity, or maybe there is damage to the vasculature or whatever -

Boon Lim (27:14): Whatever

Emily Kate Stephens (27:16): Has physically caused it. This is a shift for me, this idea that perhaps we can alleviate it without necessarily needing to go back and remove that for us to be able to heal, for us to be able to fix. Perhaps the method out is not simply by reversing the method by which we got into it.

Boon Lim (27:28): I was hoping you'd say perhaps the method out is to go in, because I think there's a lot of that as well, to go in and understand what the triggers are and to work by yourself, you know, with guidance, but mainly is to heal yourself with the work that you can do for yourself. The other aspect, which you raise, which maybe would sound slightly odd, is, you know, the Stolen Focus book by Johann Hari -

Emily Kate Stephens (28:03): Johann Hari, yeah.

Boon Lim (28:06): Yeah, it's an excellent book

Emily Kate Stephens (28:08): Excellent.

Boon Lim (28:09): And I would think that part of the collective healing of the world post Long Covid is to really, really get a good grounding and have a scientific insight into understanding the negative effects of everything that is written in that book. The social media aspects, the kind of being glued by your TV, your emails, and

Emily Kate Stephens (28:31): Lack of real connectivity, human connectivity.

Boon Lim (28:35): Yeah, and connect to earth again. Let's connect to each other, because when we're disconnected, it's another way that we shift into an autonomic nervous system state. And I guess it's a more, it's a high level order viewpoint, and this is what I call, you know, you talk about mind, body. I like to add in a third component, spirit. So the spirit healing is of a higher level awareness about why we are suffering the way we do.

Emily Kate Stephens (29:04): In terms of some of the methods that you employ and that we go into in detail in the episode, we talk about things that people might consider to be alternative or not rooted in scientific fact, breath work, mindfulness. Are there any scientific studies? For example, one of the first randomised control trials was, I believe, ever done in Long Covid, was the ENO Breathe programme, proving the power of breath work in recovery from Long Covid. Are there any other references to studies, evidence, or indeed, impacts that you see in your clinic that lifts what we're talking about from being some kind of theoretical esoteric thing into science based?

Boon Lim (29:54): I'm a bit more familiar with the ENO work, because that was a collaboration between a respiratory physician at St Mary's Hospital, who was there at the initial stages, and ENO. ENO, for those who don't know, is the English National Opera, they came up with a programme which is fairly well funded at the time to help patients with Long Covid through their Long Covid symptoms. And it's important to note, Emily that there were exclusion criteria in that patients who were too unwell were excluded from attending this service. So taking people, and we're training them, not only with breath work, but I think that sense of community on a regular basis, the sense of fun, the sense of learning a new skill to try and get into flow and connecting with individuals are, I think, things that you may not be able to fully separate out in the paper, because we know the programme works, but what specific facets of the programme, whether it was breath work or community or learning that skill of singing or the fun of it all are all components that could feed in and shift your state. So in terms of other studies, I must say that there are hundreds, if not 1000 studies now. And to be fair, Emily, I have not kept up to scratch with the studies, because I only, like you, have a finite amount of time. I do know is that a lot more studies are starting to try and measure HRV properly. And HRV stands for heart rate variability. There is a standardised measurement which is said to be the best way that we can measure HRV, which is either one or two minutes of paced breathing, which means, if you take a patient, you give them a set breath timer, so let's say six seconds for inspiration and six seconds for expiration, and you carry that on for two or three minutes at the same fixed time every day or after an intervention, you will get fixed results that are churned out by the HRV analysis software, and it will tell you your RMSSD, which is the most commonly reported marker of HRV but it will also kick out things like the low and high frequency oscillations of your heart rate index, and these are ways in which the studies have assessed the impact of, for example, vagal nerve stimulators or any other intervention like nutrition or sleep, on your resting state. How wonderful it would be, Emily, if the methodology became the treatment, because that's what we're talking about. In fact, if we got people to practice, I tell my patients to get your 10 minutes of breath work in slow, regulated rhythmic pattern. And instead of asking for the trial, that shows you that this breath will work for you, feel it yourself... Or you go to bed. Feel how breathing in this 10 minute cycle before bedtime increases or decreases your capacity to sleep better and have a more rested night and feel how you feel in the morning if you change your transition from waking up with your alarm checking your emails to just taking some time out to calibrate and set yourself up in the perfect autonomic balance as best you can first thing in the morning. And this is what I'm trying to get my patients to do, because it's one thing looking at a randomised control trial and to say this vagal nerve stimulator should really work, because the trial data says that it should work. And you buy this 600 pound device, you put it on your tragus, which is that little lobe in front of your ear, and you clip it on, and you turn the dial up until you feel a little sparkling or prickling in your ear. And then you dial it down, or you can keep it trickling with the spark for an hour. And then you don't feel any benefit, or you might not. In essence you have to take what works for you. In my mind, the cheapest, the simplest option that you could almost always immediately feel a difference, because it's such an ancient art, is to control your breath.

Emily Kate Stephens (34:27): Yeah. Absolutely. The final thing that I would like to do is, you are a cardiologist dealing with the mechanical and electrical effect of the heart. You are in no way saying that these illnesses don't exist or that a virus has not occurred that had a direct insult on people's body, but you have certain strategies that enable or encourage people to heal. Could you just qualify that in terms of your clinical experience and what you have seen?

Boon Lim (35:10): It's like that classic Lao Tzu saying, the more I know, the less I understand. And this is certainly true of medicine, especially when something like Long Covid hits you as it's hit me as it's hit many of my patients. Because the most striking thing about Long Covid in my experience is how bad we've been as a profession in helping patients. And I say this across the board, not with any disrespect to myself or any of my colleagues, we are completely unprepared for that patient with multi-faceted complaints which don't all link up in a reductionist way. And we talk about this a little bit in talking about the parable of the blind men and the elephant. To take it further, on a personal note, the way that I teach my registrar, so the way I lecture to medics about Long Covid is to say to everyone at the end of my lecture that please do feel empowered, as a doctor, but more so as a human being, to make a difference to that person in front of you. Because if you end the conversation saying, I don't know, I can't help you, your echocardiogram and Holter is normal, there's nothing else I can do. Go away. Time and time again when the patient hears this from one specialist to the next one ologist to the next one blind man trying to describe an elephant, but not really getting it quite right. The patient then adopts this persona, or at least a view that it's all in my head or that I'm sure there's something wrong with my heart or my skin or my gut. I'm told, everything is normal, so it must be in my head. This is very damaging for that patient, and they can go, I guess, one of two ways. The first way is that they get into a despondent state where they can feel that if these guys can't help me, then no one can help me. And the second state is one of anger and frustration. In both those scenarios, the helpless patient or the patient who gets a bit frustrated because no one knows what they're doing, there is a bit of the need to come back to their own power of healing, and this is probably one of the most difficult things to communicate in medicine, which is, I would say, the medicine 2.0 which is where we're at now, is very, very effective with the latest drugs, the vaccines, treatment for surgery, new implements or catheter ablation techniques, which I do as an electrophysiologist, or coronary stents, or angioplasties or surgery. These are all highly developed technical skills. But medicine 3.0 I think, comes back to being a partnership where the doctor does what they can to educate the patient, but the patient takes some of that away, takes some of the tablets, if they are prescribed, takes some of the interventions, which we know do work, also empowers themselves to change what they can internally, because the best pharmacy that we have, I would say, lives in our brains. So antidepressants, where you inhibit the breakdown of, let's say serotonin or dopamine are simply products that can be produced in your brain when, say, you're out in nature. And if you for me personally, if I'm in a bad mood or very stressed, I'd go out in the park by trees. And if there are any bird song. It's even better. I'll just sit down, take a few deep breaths, and I come back with my mood switch, and that is the best antidepressant for me. I would say there's a lot of the softer bits of science... Now, who is going to pay, unless you're the Government of Japan, who is going to pay for you to have forest therapy as a trial, for Shinrin-yoku, as it's known in Japan, forest bathing, which is actually prescribed for stress. So the medics in Japan prescribe forest bathing for stress, because it's such a well-accepted therapy, and trials have been done to show that it works. But would a pharma company ever support that as a means of treatment. You know, who makes money from this?

Emily Kate Stephens (39:47): No one.

Boon Lim (39:48): No one, but who gets the love to be out in nature? Who benefits? The patient. And when you feel this connectedness, I.e. More than who you are inside and all your troubles, and you go outdoors and you see things happening around you and below, oneness and connectedness with nature beyond yourself. It is in itself a switch in state that occurs. That switch in state is very subtle and cannot be fully trialed or randomised, but you know the feeling when you are out doing something you really love going out for a walk, going by the sea, surfing, skiing, whatever it is you're in the mood to do, and gets you in flow. Sometimes, just sometimes, that flow engages your energy centers. And when I say that, I don't mean like chakras, but it allows you to wake up and somehow feel more energetic. And there are some times, and I'm sure if a patient is listening and they want to know what that feeling is, imagine the night before your one week holiday to that bucket list destination. You could have had just four hours of sleep, packing all night, but you wake up fully excited, refreshed, full of energy that keeps you going. Now you have that same amount of sleep, but preparing for a week of hell at work, a very busy week at work, and you feel tired and grumpy, but it's the same amount of sleep. In one instance, there are factors beyond what we can express medically that charge you and put you into a flow state so your energy flows. And I think these are concepts that is easy to explain when I ask the patient in front of me - when was the last time you were on holiday and really, really switched off? I.e. There was no Wi-Fi, or phones were down, and probably 70% of the time they'll say, oh yes, my last holiday was about three months ago, or last summer, you know what? I felt 50% better. It's because I had no routine to get back to. My routine was broken, and these things that set my energy every day were taken out of the equation. I had somebody catering for me, or cooking for me, or I was in a nice resort or a hotel. And that is the shifting of states that we're talking about, which is experiential, Emily, it's not evidence-based or scientific in a way that you might say this drug can be prescribed in this way. We should come back to knowing what charges us, what fuels us, and do more of those things. And ENO Breathe is a classic example, because the ambitions were to start out something that singers knew was very helpful for well-being, which is singing, but singing with that modulated breath and diaphragm control, which comes back to my own bias. I'm strongly biased towards patients learning how to breathe properly. And the ENO programme and the publication subsequently demonstrated that you can feel better in so many clinical domains by joining a programme like this. Don't stop there. We have other Long Covid recovery programmes like Suzy Bolt's 360 Mind Body Soul programme. So many patients have fed back to me that it's been a wonderful, different way of thinking. Does it cure all their symptoms? No. So if you are hypotensive, for example, and every time you stand up, you feel like passing out, and your blood pressure is 85 over 60, then maybe you could benefit from something more, like a tablet that boosts your blood pressure together with the fluid, the salt, the compression that we talked about. So it's a more holistic view, and I would say a partnership between a physician who's understanding and a patient who really starts to experience or learn to re-experience joy and energy again in their life by doing the things that allow them to experience these things. And anecdotally, I had very bad Covid when I was skiing in May 2022 and I was rushed down from the French Alps with the saturations of 82 I thought genuinely, I was going to die of a bilateral pulmonary embolism, because the SATs were really quite low.

Emily Kate Stephens (44:12): It must be even more terrifying, because you actually understand what the SATs, what the things mean.

Boon Lim (44:18): I was in pain. I was coughing blood, and I thought, I'm gone, that my lungs are gone. I would be one of those Long Covid sufferers with damaged lungs, not the true autonomic Long Covid but I was so, so afraid. And so when I finally made it down to base camp in a town called Tournons and went into a hospital and had my CT scan, thankfully, it was just pneumonitis. It was just a Covid lung. It wasn't a PE and then I could breathe a sigh of relief. But then I said to myself, I just wrote two emails, one to my NHS secretary, one to my private secretary, and I said, no emails, no questions, nothing shut all my clinics that said I need to recover. And in that six weeks that I took off, I never knew I could put down the seven balls that I was juggling. So my lesson for my experience with Covid that I could put down balls, because I, like most of my patients - I've got too many things. I've got an academic career. I've got research fellows. I've got my kids who are, you know, have to teach in school. I've got household bills to pay. I've got the usual bog standard, stressful things in life, and I also have a bit of a type A personality wanting to achieve more, do more. And I put those balls down, and then I recognised when I came out, I didn't have to pick all seven up, so I picked up maybe four balls, and then now five balls, but it's not the same pace. And you know what, my life hasn't suffered. I suddenly haven't been demoted or been given a lousy title, or, you know, there's been no, there have been no negative consequences, only positive. It's a way of the world just knocking at my shoulder and saying, slow down, because the life that you thought needed to be lived in this way, juggling all these balls, sleeping less, coming back late, not having dinner with your family. Now that's what you have to learn, that spiritual guidance, or the listening to your heart and your intuition to recalibrate what is important in your life is something that we don't discuss enough. But I think if we take a deep look at how we were living before Covid, not after, but before, we think about what balls we can afford to drop to enhance the quality of our life experience, irregardless of illness... Instilling a sense of community, connection nature, looking after self and coming back to how we're supposed to be breathing. None of us breathe correctly anymore. You just sit on the underground one day and you just look around and you see everyone holding their breath and taking sighs. Now that I've mentioned it, you will see it. You can't unsee these things. Very few people. There are some very few people who close their eyes and you know they're listening to a nice binaural track, and you know they're breathing from the diaphragm, and you know they're in a nice state. And you can feel it. You just watch them, and you know he's in a good state. You can see others who are not in a good state, doing the emails, the spreadsheet, breathing like this, and you know they're not in a good state. So which one of those two is going to get Long Covid? If both of them had Covid because you coughed on them, you can tell awareness is amazing. It's allowed me to see people in an entirely different frequency.

Emily Kate Stephens (47:48): That is a wonderful point to end on, because I think it gives people something to reflect on. 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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