My daughter’s Long Covid changed how I practice medicine

Binita Kane (0:05): What I've had to do is unlearn vast swathes of medicine, and how I've been taught to think as a doctor, and rethink medicine, going back to absolute basics. This isn't just a case of go and see a doctor, get some pills, and get better, but there is lots of hope, and I am seeing people getting better. I think it's really important, even if they've been ill for 2, 3, 4, years, I'm definitely seeing people improving.

Emily Kate Stephens (0:33): Welcome to Make Visible the podcast shining a light on complex chronic illness. I am your host, Emily Kate Stephens. Hello, welcome to this week. Hi, Gez. How are you doing?

Gez Medinger (0:58): I'm surviving, Emily. How are you today?

Emily Kate Stephens (1:01): I'm good. I'm really good. I'm just going to start at the top of this show once again, asking people to share their comments and feedback with us, because I have started doing some in a series of listener interviews, so conversations with some of our listeners, and my goodness, there is some incredible conversation coming out of talking to other people, other than you, Gez. I love talking to you, Gez, but actually, this is - I'm really excited to be sharing some of this going forwards with everyone. So, I just encourage you to tap the feedback form or send us an email - everything is in the show notes, but your engagement in the show is so exciting, and it really is helping us. We are reading all of it, and we are trying to respond, and we are trying to shape based on what people are saying to us. So, the other thing to share with you, Gez, you just asked me how I am. I've just been to the hospital to have blood tests for my daughter, and I have to say that the process of being a mother of someone with a post-viral situation is a whole new world of navigation, and if I thought that I'd got to grips with sorting things out for myself, now that I'm dealing with pediatrics, and the fact that you can't just walk into a phlebotomy clinic and get a blood test. It takes five or six weeks. I'm going through the same roller coaster of trying to get help as I experienced back six years ago, and I share that to lead us into this week's interview, which is with Dr. Binita Kane. And you've spoken to her previously, haven't you Gez, and -

Gez Medinger (2:42): I know her very well. She's, she's superb. She really is.

Emily Kate Stephens (2:44): So, there were a group of you, weren't there, that got to know each other and have worked together as advocates of Long Covid, and trying to further our understanding. And she's a remarkable lady, she's a respiratory physician, and was on the front lines at the beginning of the pandemic, but as she'll describe through that, and through her personal experience, she took on a role in trying to understand and help people. Let's start, not right at the beginning of your entire story, but let's start at the beginning of your story as we go into the pandemic: you were operating then on the front lines and dealing with acute Covid cases, and at that time became part of the public response to Covid, you joined Independent Sage, and so you were actually advocating or speaking when we were dealing with acute Covid, and from then you developed a personal relationship with the after effects of Covid, when your daughter developed Long Covid in 2021. Can you tell me about that initial journey and what it was like at the point at which you found your daughter had a post-viral or viral consequence?

Binita Kane (4:16): I will say a little bit about that early pandemic experience. I was a respiratory clinician on the front line of the pandemic. Looking back, it was just the most extraordinary time for lots and lots of different reasons, but I got quite interested very early on in the back door of the hospital, so whilst we were planning for this huge torrent of patients coming in and intensive care beds and creating capacity to look after the acutely ill, because my interest was in integrated care, and what happens when patients leave hospital. I started thinking about that very early on. How do we get people out and create the capacity? And so I set up the Manchester Virtual Ward for people with Covid, and over the course of that two years, we supported about 4000 people at home across the three big teaching hospitals in Manchester, and we were using remote monitoring to keep them safe once they were discharged from hospital, and we had escalation pathways back in if they got sick. And so very early on, long before my daughter got sick, I started realizing that people were not getting better. Our pathway, when patients went home, was only supposed to be maximum two weeks that we would log after them, and we had these patients who were sometimes 3, 4, 6, 8, weeks later, still really poorly - really, really, really struggling with symptoms, with the brain fog, with the fatigue, and that was the same time as around the patient population started realizing that something's not right, people are not recovering in the way that we expect them to. So I had an interest in post-COVID condition, but very much not an understanding, I would say, what it's physically like to have a condition like ME or long COVID. Then, in the January of 2021 my daughter, who was then 10, had what seemed like an innocuous viral infection, and we weren't, I think the PCR testing was a bit patchy. It was available, I think we did get her PCR tested. I can't remember now. It's terrible, isn't it? Anyway,

Emily Kate Stephens (6:10): it was quite a time.

Binita Kane (6:11): Yeah, she had the very typical symptoms: altered taste, altered smell, the mild temperature, sore throat, and she just didn't recover. She had been perfectly healthy prior to this, very fit and well, 100% school attendance, and she just didn't recover. Became very pale, very lethargic, and we thought initially, okay, it's just going to take a few months, and we carried on, but at the three month point, you're like, okay, something really isn't right, and that's when I was very lucky, because I worked in a hospital. I was able to engage my pediatric colleagues very quickly. They said, "Yeah, bring her in, we'll do all the tests. So they did all the tests, all the blood tests, ECG, and at the end of that process, they said, "Oh, there's nothing much we can do, we'll send her to the ME

Binita Kane (6:58): blotchy, and it was almost like you could see the clinic". I'm like "ME?". And my... and I'm, I'm ashamed to say that my very first reaction to that diagnosis was, oh my perfusion coming back. It was like, wow, she didn't have god, I don't want her to have that, because that was a label, apherisis, she was too young, and that was too invasive. a stigma that you are taught in medicine - it's something that's

Emily Kate Stephens (7:11): Yeah, that's what I wondered. five couldn't really quite believe all in the mind and it's psychological, and genuinely that's all I knew about it, which is pretty shocking now, looking back, but also eye-opening in hindsight that I knew such little about it. So we went to the clinic, and I would say that everyone was lovely, really nice, but there was really very little on offer at that point. I'd figured out how to pace, because I'd seen some amazing patient resources, but it wasn't patient resources that I used. These are things written by patients. These were not anything that was available in terms of, oh, here's a clinical guideline, or here's, yeah. And then I followed the advice, and actually the advice wasn't all that correct in hindsight, and -

Binita Kane (7:59): But I think once I'd seen the platelets and the it. But I have to say that it wasn't just the drugs, it really wasn't just the drugs, and this is a, this is a very, very micro clots and seen the scientific evidence, and it all important top point. The drugs will only work if we do all of the other stuff well, and that was complete rest, taking her out of school entirely, pacing in a scientifically sort of kind of made sense. being sensible way. She did some vagus nerve stimulation, we were doing kind of programmed rest, if you like, three three or four times a day, where she'd have to go and lie in a completely dark room, no screens, and

Emily Kate Stephens (10:29): yeah, no stimulation,

Binita Kane (10:30): calm the system down, and that was a real battle, because her behavior changed during the time as well, and sorting out nutrition, sorting out sleep, it wasn't just, oh, here takes my drugs, as you're going to get better. I really want to emphasize that, because there is no magic pill for this condition. It takes a multi factorial, multi pronged approach. I did a lot of work during that time around regulating my own emotions, and I'm very happy to talk about that, because your kids will feed off your anxiety and your own issues, so I did a lot of that work, and I, I never once let her think she wasn't going to get better. Our mantra at the time was "life will be good again". "Life will be good again", and we always kept that at the front of our mind, and I very much did a lot of work on myself as well, so I think that's important to highlight, because this isn't just a case of go and see a doctor, get some pills, and get better,

Emily Kate Stephens (11:27): And actually amazing advice for anyone who is caring for someone with one of these conditions, not just a child - a partner, whoever you're caring for, that idea of trying to help with this multi layer, it's the layers, isn't it? And it's bringing all the layers together. And actually, for you, that was a full-time job at that point, I believe?

Binita Kane (11:51): I was still working full time.

Emily Kate Stephens (11:53): Wow,

Binita Kane (11:53): It's actually my husband who ended up giving up work, folding his business at the time, which was a new business. It was a very difficult time for the family, because we then went down to becoming a one-income family, which, for me, on a consultant salary, that was absolutely fine. I'm not saying, you know, that it was not a problem for us. But this is what is happening to many, many families, where they've got a child who's sick with Long Covid, they, the parents can't work, the child's not in school, and so they become single-income family, and they're having to pay for private care a lot of the time because the NHS services are just not there consistently across the country, so you end up in this kind of double, triple, quadruple whammy of problems, and it's very easy to become extremely anxious and for it to affect your mental health, and that's why doing that work on yourself is really important, because this is hard stuff, it's really difficult.

Emily Kate Stephens (12:47): Yeah, and it's not about trying to suppress it, trying to just pretend that everything's okay. It's actually, as you've got to go deeper than that, I think.

Binita Kane (12:56): Yes, I mean, anyone can sort of practice toxic positivity and go, hey, I am fine, and do sort of affirmations that you don't believe, but that doesn't really work. It is about doing that work -

Emily Kate Stephens (13:08): doing the work

Binita Kane (13:09): - properly. Maybe that's for another whole session, but

Emily Kate Stephens (13:11): Well, there are so many directions that we can take this in. But if we look at that treatment plan that your daughter has, and you have worked closely subsequently with Team Micro Clots, as they've sort of been labeled, people like David Patrino. There are almost different camps around the world with different strategies. Still, do you think that everyone with Long Covid would benefit from that kind of treatment that is dealing with platelets and micro clots?

Binita Kane (13:46): Absolutely not. So I think I think it's important to think about Long Covid as an umbrella term, and I want to use the analogy of if somebody had just labeled autoimmune diseases autoimmune disease, and we didn't have the sub classifications of rheumatoid arthritis and SLE and Sjögren's syndrome and all the other different autoimmune conditions. And it would be like saying, well, everybody with autoimmune disease needs this drug. Because of the research vacuum, we've kind of got this umbrella term which lumps together multiple different underlying pathologies, and we haven't yet characterized the disease in a way that we can sensibly say "this is how you treat this bit" and "this is how you treat this bit". We've got really good clues, and I think, as a clinician and someone who treats this condition full time now, I see pattern after pattern after pattern, and I can put people into buckets, which sounds dreadful. I don't mean that. I don't mean that literally. I don't put anyone in a bucket, but I can characterize people into these sort of buckets of, okay...This definitely looks like quite vascular presentation. This looks like an autoimmune presentation, this really looks like mast cell activation. This person's very dysautonomic. This is much more neurological, small fiber neuropathy, and then there's lots and lots of overlap between all of those buckets as well, so you end up with this sort of almost big Venn diagram, and what I think I've had to do is unlearn vast swathes of medicine and how I've been taught to think as a doctor, and then rethink medicine, going back to absolute basics, like let's look at the person in front of it, take a really detailed, very, very detailed history, right the way from birth, let's look at the predisposing factors, let's look at clinical examination, if I'm lucky enough to be able to see someone face to face, because they can travel and then let's really go back to first principles and go let's treat the treatable and in parallel to that - what does this person's life look like? How well are they pacing? What are they eating? How are they sleeping? How are they breathing? What does their gut look like? All of these things are important, and something that I've been focusing more on recent years is what does health look like, because believe it or not, as a doctor, you don't get taught what health looks like, you get taught how to treat disease and illness, but you don't get taught how to promote the landscape for health.

Emily Kate Stephens (16:18): Yeah, because it's not about preventing these things, it's about treating them once they're already in motion.

Binita Kane (16:24): Yeah, so actually, if we're going to now create a landscape within the body that is going to help this person really truly heal and recover, what does that look like? And it's almost like a 50 piece jigsaw puzzle, and you have to work on each piece one step at a time, and that I'm working on average with people for 18 months, two years, which is why I've got such an awfully long wait for my clinic, because people are in the clinic. I do like to work with them properly and give them that continuity and that oversight, and people will often be under lots of different doctors and different clinics, but what I try and do is provide that oversight to say I will be that holistic person who will look at all of it.

Emily Kate Stephens (17:07): Which is so frustrating in our healthcare system, because actually our general practitioner or primary health care provider should be there to give a holistic overview of your health, and then be able to field out individuals to the relevant specialties, and with the Long Covid clinics predominantly being disbanded, and people being handed back to their primary care provider, a lot of people don't have that. A lot of people do not have one person who is looking at their entire body, their entire health, and helping them to move forwards, and I think that's a massive failing that we have in the system that in which we live.

Binita Kane (17:53): And this is true for conditions outside of long COVID as well. I would say, you know, my NHS colleagues are the best in the world at acute illness.

Emily Kate Stephens (18:02): Yeah,

Binita Kane (18:03): Mangle yourself on the motorway. You have acute pneumonia, you have a punctured lung, you have appendicitis. We are incredible. We will sort you out very quickly at no cost. Additional cost to you.

Emily Kate Stephens (18:17): And that is incredible. That's absolutely incredible that we have the universal health care.

Binita Kane (18:20): I mean, you know, blows my mind, the stuff that people in the NHS are doing, heart transplants, this, that, when it comes to something chronic, complex, poorly understood, we do not do that well at all, in fact, appallingly, and whether that is - even in conditions where there is a specialty that houses that condition, like rheumatology, for example. We'll see lots of people with complex chronic illness. It's still fragmented, and it's still difficult to get somebody to look at the whole picture. So, this is something that's missing from medicine in general, and I think it's just been exacerbated massively by Long Covid. I think the other problem with Long Covid is a lot of the systems that are affected, like the vascular system, like the autonomic nervous system, like the immune system, do not fall into any one specialty. So, POTS isn't a heart problem, so cardiologists don't deal with POTS, by and large. It's not a neurological problem, necessarily. It can be, but not necessarily. And vascular disease is treated by vascular surgeons who aren't physicians.

Emily Kate Stephens (19:34): Yeah,

Binita Kane (19:34): So and then mast cell activation falls between immunology, allergy, and dermatology, but nobody really does it properly. And Ehlers Danlos we don't even have any specialist services, so we've got all these poorly understood conditions that don't have a home, and therefore you pitch up to a specialist clinic, you get really angry and upset that they don't know your condition, but they're not taught.

Emily Kate Stephens (19:56): Yeah, and that's something that I've heard you say before, that when this situation was presented to you, so clearly right in front of you, you said you had a hole in your medical training for dealing with complex chronic illness, for dealing with this kind of thing, and that's you are highly educated physician, and throughout all of your training, you were not taught how to deal with this. However, I want our listeners to take hope from something that you just said, and the way that you explained these multiple things that you can put on top of each other is that there are ways that you can help people, so all the people who have been turned away by their primary care provider or by the specialist who says there's nothing I can do, there's nothing on these tests, there's nothing wrong with you, there's nothing that we can do for you, that is actually inaccurate. If you are having symptoms, there are things that can be done to help alleviate them, and I think that is something that a lot of people are losing hope with, in terms of the care that they are being provided.

Binita Kane (21:09): Yeah, I've got a few things to say about that. Firstly, sometimes people are being told the tests are normal when they are not, particularly because dysautonomia, this idea that your nervous system overreacts to normal exercise, and you become very tachycardic when you do anything that's a huge contributor to fatigue, and it's a huge contributor that pushes you over the threshold at your energy threshold, and can contribute to PEM, and it's not well understood. So, I'll explain this with the example of a 24 hour ECG. Now, the vast majority of 24 hour ECGs are requested by cardiologists to look for heart rhythm problems, so if you're having funny rhythms and got symptoms because of that, that's why we do them. So, if there's no rhythm rhythm disturbance and they just see episodes of fast heart rate, they will say that's normal, because the person who's reporting it knows nothing about the patient who was wearing it and what they were doing at the time

Emily Kate Stephens (22:08): What they were doing. Yeah.

Binita Kane (22:09): And so when I do a 24 hour or 48 hour ECG, I always ask the patient to keep an activity diary, and I go, "Oh gosh, what happened there? The heart rate's under 50, and I look at the activity diary, and I go, "They got off to brush their teeth, that's grossly abnormal, but that same test will have been interpreted as normal. Had another patient who had a 24 hour blood pressure, and it averaged at 130 over 80, it's normal. I looked at the raw data, the highest blood pressure was 160 over something, and the lowest blood pressure was 60 over something. Wow, there was this really prolonged episode of hypotension, where the blood pressure was absolutely in their boots for about an hour, an hour and a half, but because it got averaged out, it got reported as normal. Yeah, so this is where

Emily Kate Stephens (22:55): Yeah.

Emily Kate Stephens (22:56): the symptomatologies that that it comes back down to that careful history, taking looking contribute to Long Covid. We didn't actually get to the point at the person in front of you and applying the test to that person and what they were doing, and that's a fundamental thing after you working with your daughter and taking her to that a lot of services are getting wrong, and I think Germany and seeing her begin to make improvements to one, what there's also people will do a POTS test on a single point in happened to your daughter subsequently, and to your time and say someone doesn't have POTS. impetus then to set up the Long Covid clinic? So, could we go back to how your daughter progressed?

Binita Kane (24:52): Yes, Jasmine started treatment in February of 2022 and then there was, as say, four trips to Germany over the spring and summer. There seemed to be a real turning point in the summer, towards the end of the summer holidays, that it was almost like a switch, and we were like, oh, we're seeing some really sustained improvement, but you don't dare to hope, and we'd been to the school, of course, before the summer holidays, and she was transitioning into high school. We've been to the school, and they were really wonderful about adaptations, and we said she's probably not going to be in very much, and we need to see how it goes. And it's transition to high school's massive anyway, and bigger kind of lots more walking, lots more activity, lots more stress. So we're gonna have to really manage this, and she made us look like complete fraud, like complete liars. She turned up on day one, and she just went back to school full time. Yes, she wasn't doing PE. Yes, she wasn't walking to school and back home from school in that first year, but we just very slowly, and she almost led her own rehab, I would say, according to what she felt she was able to do by the end of year seven. She was able to walk to school, but then maybe not do the walk back by the end of year eight. She was walking to school, walking back, doing PE summer term. She's in year 10 now. She did a Duke of Edinburgh bronze expedition in between two full weeks of school with no server, and she skied very hard for six days in a row with no problems whatsoever.

Emily Kate Stephens (26:23): No consequences?

Binita Kane (26:24): No consequences. Back to school on Monday, so she's, she's, she's healed, she's recovered. That's incredible. Grateful for that, very grateful, because in 2022 when she was in a wheelchair and she couldn't walk 100 meters up the road, I could not have imagined a few years later, that's the level she would be at, but I am seeing recovery in the patient group, they're given the right help and support.

Emily Kate Stephens (26:50): I just highlight one point that you made there, when you described your daughter, you said she said her own recovery, and I think that that is something that's very interesting in this space, even with a child, is that belief that someone knows their own body. I think, especially when we spend so much time consumed by our illness and consumed by our situation, trusting that that person, even if they are a child, has that understanding of their body that they know how to push it or not push it, and how to lead rather than being completely guided from from external, and obviously you, as a mother, it is a much closer guide than a doctor, but a doctor who is seeing someone, maybe at regular intervals, maybe not telling people what they need to do, it all has to be patient led.

Binita Kane (27:51): It does, and I think I think it's very hard because there was definitely times where I was anxious about what, how much she was doing, almost in not pushing her too much, like I think a lot of patients face the opposite, they face being pushed and people being told you should be, you should get up, you should do more in a waste away, deconditioning. I was almost the opposite, I was almost like she really wants, she wants to do that, and I was almost fearful, but she wanted to do it, and it was kind of okay, I'm going to trust that instinct, and let's just see what happens, and she won't get it right all of the time, and she was fine. I had to deal with my own fear and my own anxiety about it, and just trust that she was listening to her body, and she knew what to do. But I think that that balance is very hard to strike, because I have so many patients who get well enough to a point, and then they'll, they'll go on holiday, or they'll do something, or they'll have a big spring clean, because they're feeling better, and then they'll crash themselves massively. You're nodding knowingly. Then there becomes a bit of a, or do I try and do that again? But I think this is where having the scientific knowledge about pacing, having the tools to help you light visible, and having some expert guidance, if you're lucky enough to be able to access that, is so critically important. Because one of the big problems in these conditions is your head and your body are often disconnected. People's brains are telling them things that aren't true, and their bodies are not ready for it.

Emily Kate Stephens (29:17): Yeah.

Binita Kane (29:18): And actually to truly tune into your body and really listen to your body takes its skill.

Emily Kate Stephens (29:25): It takes about six years. I'd say.

Binita Kane (29:26): Are you getting there, Emily? Yeah, it's not easy. None of this stuff is easy, and not everyone will get it right all the time. You know, I feel incredibly grateful and fortunate that that is how things worked out for my daughter, but there is no judgment whatsoever when people do get it wrong, because it's so hard.

Emily Kate Stephens (29:44): But it's not just fortune, it's not just luck that that happened, because of the sheer volume of research. Obviously, you are in a privileged position, because you had access to so many experts and amazing people, but at the same time, one of the things that I've read that was your basis for how to start structuring a care program for your daughter was actually talking to other patients. And, like you said, from the beginning of the people coming into the hospital, the back door of the hospital, you were learning from the other people suffering from it rather than necessarily other..

Binita Kane (30:22): 100%. I just put my hands up, and when I don't know the first thing about this pacing, I've never heard of it before. And I've been a respiratory consultant for nearly 10 years at this point, and I've never heard of the concept of pacing, and that tells you all you need to know. I would hope that that has changed now, but there's another really interesting thing, which I think, for the visible audience, is very relevant, that there are huge, huge, huge insights and benefits we can gain through understanding exercise physiology, which sits with exercise physiologists, sort of famous ones in our world, Todd Davenport and Mark Fahey, and then Robin McNelis, who I work with. Well, he's a physiotherapist.

Emily Kate Stephens (31:04): Lovely Robin.

Binita Kane (31:05): Yeah, he's physiotherapy, but with an interest in exercise physiology, but the doctors don't get taught that stuff. To everything I've learned about exercise physiology, anaerobic thresholds, lactate thresholds, these guys who train athletes are doing it every day, all day, and it's the same principles, but we're taking about what athletes do. They're trying to nudge up performance ever so slightly without over training, and when you look at overtraining syndrome in athletes, guess what the symptoms are: fatigue, brain fog, muscle soreness.

Emily Kate Stephens (31:37): It's the same as post-exertional malaise.

Binita Kane (31:40): Yeah, PEM so we've got all this knowledge that's sort of sat in that silo over there that we're not applying into our ME/CFS clinics, which are still quite historically based on much older ideas.

Emily Kate Stephens (31:54): Yes, there's a bit of a problem, isn't there? This, when I interviewed Todd Davenport, he said it's saying that I'm an exercise scientist, it's almost sounds like a dirty word in this space, because what you're doing is you're bringing that world of the elite athlete and elite performance and trying to apply it to almost a person of physically the opposite to an elite athlete, so you can see why some people might have not necessarily tried to bring the two together, but it's amazing what we can learn in that space across various things. For example, the way that elite athletes breathwork train as well.

Binita Kane (32:31): That's another whole area, which I'm a respiratory consultant, and everything I've learned about breathing has been in the last five years. I'll be completely honest with you,

Emily Kate Stephens (32:41): It's amazing. Because I've trained as a breathwork practitioner, I've done two different trainings now, and obviously I have no knowledge like you do about the actual lungs, but in terms of the physiology, we as humans should have so much more of a fundamental understanding of how we breathe and the impact that breathing has on our entire system.

Binita Kane (33:06): Yes, and thinking about this whole silo idea as well, it's really interesting because I've learned an awful lot about this whole 24 hour breathing stuff through not just through Robin and my team but also Dr. Louise Oliver, who's another lady who I work closely with, who she's a GP, but she retrained as a bathwit practitioner in the last five or six years, and she's got very, very, very interested in here to here, and one of her observations is time breathing is kind of done by physios, sleep breathing is done by respiratory physicians, but not all of them, just the ones with a sleep interest.

Emily Kate Stephens (33:42): And when people know or consider that they might have an issue.

Binita Kane (33:45): Exactly, and then you've got breathing that's integrated into all sorts of somatic and psychotherapy approaches as well, but no one's really putting it all together and doing 24 hour breathing patterns.

Emily Kate Stephens (33:58): Breathing for life!

Binita Kane (33:59): yeah, because people's breathing patterns change from when they're sitting to when they're exerting to when they're sleeping to when they're stressed, and there isn't necessarily the focus on nasal breathing that there needs to be, and we've got all these people with floppy airways with Ehlers Danlos syndrome who have probably got upper airways resistance, which isn't sleep apnea, but they've got symptoms that they're not being treated because it's not sleep apnea, there's a whole world of stuff around breathing pattern, around upper airways, around nasal, and Louise is amazing, because she tries to work across the spectrum with dentists and orthodontists and deep physicians and physios and all of it, but why is that not just done in one specialty.

Emily Kate Stephens (34:39): And why is it not also something that's considered. I was speaking to the orthodontist and my kids the other day, and she said that so many kids that come in, she can see from the shape of their mouth that they have breathing pattern disorders. The dentists are actually the only people who have this porthole to our health on a three monthly or six monthly basis, in a way that doctors don't, so we could also bring dentists into this, because they see something that other people are not observing on a regular basis.

Binita Kane (35:10): Dentists, again, in a different silo. Yeah, so yeah, things I think what Long Covid and me and these whole body conditions really highlight is that need for interdisciplinary working for people to come together and stop working in these silos.

Emily Kate Stephens (35:27): Do you think that over the last six years we have become better at creating that more cohesive approach to healthcare and chronic conditions, or healthcare in general? Are we learning that we need to look at things in this, there's a term that you use, not necessarily multidisciplinary, there's another term as well, isn't there?

Binita Kane (35:48): Interdisciplinary,

Emily Kate Stephens (35:49): Interdisciplinary, because it's actually this overlap.

Binita Kane (35:53): Yeah, it's hard for me to comment, because that's a really big question, and I'm not an expert on every service and what people are doing. My feeling is that the current way that NHS commissioning works, and the current way that funding works, and the current way that things are set up in the NHS, which is still very much not integrated, even though on paper that is what the NHS is trying to do, is trying to become much, much more integrated. Actually, in reality, that's much harder to do, and I've got lots of experience of trying to do systems leadership, of bringing services together across boundaries, and it's very hard because of the way the payment systems are set up, right. So, until we have money following patients and outcomes that are based on systems value, like what's the value to the system, I don't think things are going to change. I remember doing a talk to our long COVID oversight committee in my local area, and it was called "Where is the value? because these patients were coming into the system, they were waiting for then a multidisciplinary discussion by a bunch of folk who never seen them, then getting shipped off to five different clinics and having loads of different tests, and then coming back another six months later, having had a load of money spent on them, then no better, and still not having access to treatments. I'm like, well, Who's winning here? Is it the patient? No. Is it the system? No, you're spending loads of money. Is it the health economy? No, because that person's still not working. Who's winning? And I think until we start to look at healthcare services through that lens of where's the value and where's the value for what we're putting in, that's going to be very difficult to change.

Emily Kate Stephens (37:34): Let's talk about the structure of the Long Covid clinic that you have created. Have you managed to create a layered team of different specialties to help patients?

Binita Kane (37:46): First thing to say is, what I have done is quite different in that my team is split all across the country, and my patients are all over the country as well, and we do probably 90 plus percent of everything we do online, which has got massive benefits for this group of patients, because they're accessing healthcare from home in a group that's energy limited, but it's got some disadvantages as well, because it means I can't really set up something really comprehensive local that's got everything it needs, but I have two GPs, a pediatrician, physio, nutritionist, psychologist, breath work practitioner, and we do meet and have multidisciplinary team meetings to discuss patients where that's that's going to support their care plan, and their medical treatment is overseen by one clinician, one physician who can start treatments, tweak them, and continue. The demand is just overwhelming. I can't keep up. It's just, it's hard to be okay with the level of demand versus what I can actually provide, and it's expensive because people think that if you go into the private sector, you'd be rubbing your hands together and rolling around in money, and it's really not. It's extremely expensive running a private clinic, and all of that cost has to be passed on to the customer, which is how any business model works. So, when you've sort of factored in the regulatory side, having your systems, having patient record, having your insurance admin staff, management staff, all of that stuff, it's hugely expensive, and so constantly trying to strike this balance between providing a really good comprehensive service, it being affordable, but it's not affordable to most people, that's the problem, I guess. Going back to your question, have I cracked it? Not really, it's not a perfect service at all, but it's good enough to be providing really good care to lots of people, and actually, it's something which I set up in the last few years. The whole thing, in terms of an NHS budget, is really not hugely expensive, and it would be very easy for the NHS to emulate something. The problem is, you don't have -

Emily Kate Stephens (39:54): To scale it -

Binita Kane (39:55): You don't have the experts, that's the problem. We have to train the experts first.

Emily Kate Stephens (39:59): The level of understanding that you have from your experience as a respiratory physician, and from your personal experience, that is what is hard to emulate in other practitioners.

Binita Kane (40:12): It is, but I think all super specialist services start somewhere. For you look at how intestinal failure services have been set up across the country. It started off with this one hardcore champion who went, "We need a service for this". And 20 years later, there is a nationally commissioned service now, and various centers across the UK. It has to start from somewhere who somebody's got the expertise, and I'm certainly not the only expert in the UK. Plenty of people who could train and help get knowledge out there and develop resources, but most of them work outside of the NHS, because you can't run your service in the NHS. So, unless the NHS is willing to work with people like me, and in fairness, they are. I've actually been very welcomed onto the Department of Health and Social Care team that's working on the me pathways, and the Royal College of Physicians have had a meeting with them, and they're really willing to collaborate and do something different, and that's great, but it's unconventional, it's weird, it's not the normal way to do things. I have nothing about this world as normal.

Emily Kate Stephens (41:14): I don't want anyone to think that I am in any way disparaging to any of the healthcare professionals that are contributing or have contributed to this in terms of our discussion today, because honestly, the people that I have met and the people working in this space, I am blown away every single time I have a conversation with the dedication and the willingness to push the boundaries of what they have previously been doing to try and get traction in Long Covid in infection-associated chronic conditions. So, I don't want anyone to think that I am in any way discouraging, but I do think there are a lot of people still there who are reliant on the NHS, who are reliant on their primary healthcare provider, who have not been getting the help. So, it's so amazing to hear you talking today about how there is, there is hope out there for people, and there are things that people can do, and I know that it seems frustrating for people, but we are moving forward, I think.

Binita Kane (42:15): We definitely are, and my YouTube channel, which I titled The Long Covid Clinic, what you can do. Because I was so fed up of people being told there's nothing you could do, has got lots of live stream discussions that I've had with various people on things, and there's there's some topics in there which are very much aimed at just putting information out there for people to access. You can't maybe access private care, but I would say a lot of the discussions they do still require that support from a healthcare professional to get on board and support you. So, I understand people's frustrations. We're trying to put as much information out there as possible, but there is lots of hope, and I am seeing people getting better. I think it's really important, even if they've been ill for 2, 3, 4, years. I'm definitely seeing people improving, and whether that's time alone, whether that's time plus a bit of help from my team and the clinic, whether that's medication, there's definitely some patients where you can transform their lives with very simple drugs like ivabradine or beta blocker, and stuff that anyone can prescribe, really, but we just, we've got to work on that education piece and upskilling the wider healthcare professionals as well,

Emily Kate Stephens (43:25): Can I just ask you for your top line practical advice that you offer to your patients when it comes to pacing?

Binita Kane (43:37): Yes, pacing, I will never stop going on about how important pacing is, and people sometimes, when they're two or three years into their journey, and they come and see me, oh God, she's going to talk about pacing, I'm sick to death of pacing and hearing about pacing, but there's pacing, and then there's pacing scientifically, and I think a lot of people think they're pacing, but then when you actually look at data, the pacing is suboptimal, and when I say scientific, I think about lactate thresholds and switching from aerobic oxygen dependent to anaerobic oxygen independent ways of producing energy, and I think about the journey of oxygen, I think that how it gets from the air into your lungs through your breathing and how it's getting delivered from your heart to the tissues by the circulation and the problems with that with pots and then how it's diffusing across your endothelial cells and how it's getting into the mitochondria and then how the mitochondria are using that and a lot of people don't realize you can't store oxygen in the body, so you're reliant on a constant supply, and therefore, if your heart rate is going very fast, even if you're not doing anything that is mimicking an exertional state, and it increases the amount of oxygen you need, and it then means that if your heart rate's uncontrolled, you're going to run out of oxygen more easily than if it's not, and then when you run out of oxygen, you go into anaerobic ways of making energy, which produces lots of lactic acid, and that's what creates permanent inflammation and makes people crash. So, thinking about that pathway and where you can intervene at different points, pacing is really, really, really, really crucial part of that. And you can use Visible, for example, and there's obviously other devices out there, but the thing I love about Visible is the fact that it's designed for chronic illness, whereas most of these other devices are designed for health, and those athletes we were talking about using a tool like Visible to keep below that anaerobic threshold is so vitally important to allow that underlying the inflammation, the mitochondria, the mitochondria just constantly burnt out, and we need to give them a rest, and sometimes it can take 2, 3, 4, months of being really stable before we'll start seeing that improvement. I mentioned about Jasmine just seeing a switch, and it was almost like at the five or six month point there was a switch, and it was like, okay, my mitochondria could work again now, and we started to see that improvement. So it's hard, it's difficult, especially for people who've been go, go, go, go, go, and burnt out with the Long Covid. It's, it's so tricky to keep that balance and guessing and trying to do it without something like Visible is possible, but it's harder. So I do generally recommend a wearable device, the exception being if somebody's got a lot of anxiety and then the constant alerts are going off, and then it becomes counter intuitive and problematic, but I use that in combination with treating the underlying cause of heart rates going high and looking holistically at their lives as well, and someone like Robin and my team will have a meeting with the patient and go through things in almost microscopic detail to look at how they're managing day to day and give advice on not necessarily doing less but doing different.

Emily Kate Stephens (46:59): So that's also one that they could go to your YouTube to watch your session with Robin to take some advice on how to do that. Is that right?

Binita Kane (47:08): Absolutely. Yeah, so there's a sort of a background session with Todd Davenport, and you've interviewed Todd as well, so he's on a few different podcasts. Yeah, but it's called the Micro Pacing Method, and Robin's developed that himself through his own experience of Long Covid and his scientific knowledge of cardio respiratory stuff in the NHS and its physiology,

Emily Kate Stephens (47:28): it's amazing, and he was one of the first people that I met who was really digging into that, and I love his journey that he's gone on. That's one thing that I do find really exciting is that so many people started out interested at the beginning of this situation and had their convictions about what they thought was going on, and so many of them have turned out to be absolutely accurate. It's taken us five years since their initial thoughts to almost prove it, people to believe it, but there are a lot of people in this space, some of whom we've referenced already, but I spoke to Robin in early 2021 I think, and he was already there.

Binita Kane (48:14): On it, yeah.

Emily Kate Stephens (48:15): With this idea of anaerobic threshold, so that is something to be said for sticking to your convictions. Obviously, you need the science to back you up, but there have been some amazing people doing that in this space.

Binita Kane (48:28): And I think the other thing about the pacing, particularly the visible app, is that it's not just about the physical and it's not just about the heart rate monitoring, because actually HRV is very, very sensitive to other stresses as well, so someone's going downhill because they've got an emotional stress going on. It will be picked up in HRV, and that goes for whether you're ill or you're not ill. It's a really good marker in general of health and stress levels on the body, physiological stress. So monitoring that HRV and looking at those trends is really, really important.

Emily Kate Stephens (49:02): And seeing that heart rate spike in stressful situations, it -

Binita Kane (49:06): yes,

Emily Kate Stephens (49:06): - almost gives you that visual of the fact that our body is our emotional stress is the same as our physical stress.

Binita Kane (49:14): Yeah, and I always talk about the fact that 90% of our autonomic nervous system, which, by the way, controls everything in our bodies, and you don't get taught anything about it in medical school, bizarrely. Anyway, that's for another topic. That 90% of our autonomic nervous system control is subconscious. So I was wearing a Visible armband for a while, just so I could show my patients how it works, practical when I see them in clinic. Look, this is how it works. There's the app, how you interact with it, but it was so interesting, because it wasn't the physical stuff that would set my heart rate going. It was definitely emotional stress. So, there was this one meeting I had to, I had to mediate. There was these two conflicting parties, and I was acting as a mediator, and I wasn't stressed about the meeting consciously. Yeah, and I thought it went really well. By the end, we came to a sort of sensible conclusion. And then I looked at the app, and my heart rate had been going 140 all the way for the whole hour. So, something about conflict, and we don't want to turn this into a therapy session, but probably it wouldn't take a genius to work out why conflict is a might be a trigger for an adult. So that was something I was like, all right, that's that's the trigger I really need to go and sort out and really need to look into, and this is the Bessel van der Kolk stuff, The Body Keeps The Score, that I would not have been consciously aware that that was going on at all, this is this is all in the subconscious, and I do think that working on those triggers is a really important part of supporting recovery, and that is a completely different conversation to nothing wrong with you, think yourself better. This is about autonomic nervous system regulation, which is an important part of recovery in any chronic illness. Me and long COVID aren't that special in this respect, and so actually it can be a very powerful tool for you to start to understand what your body is reacting to that your mind isn't, and trying to modulate those.

Emily Kate Stephens (51:05): So working on it, but you have to first identify those triggers, or actually have that overview of how your body reacts to certain things.

Binita Kane (51:13): Absolutely, and there's many, many different modalities and ways of doing that, and actually I think that a lot of the somatic type of techniques, rather than the talking therapies, which can just sometimes keep triggering people and not necessarily resolve anything. It's that somatic work where you go in and you can release some of these things, is very helpful, but everyone gets to that kind of work in their own time, and I'll have some patients who are very, very open to that conversation, and others who are very traumatized by any discussion about the subconscious mind, because they have been gaslighted and told they're anxious and told all of these different things, and it's a shame, because now that conversation itself has become a subconscious trigger for the nervous system, so you don't go there, you treat them in other ways, maybe breath work or something is going to be better for that person. So, you have to adapt your approach to who's in front of you, and this is why I really dislike these blanket tools for people with Long Covid. It has to be individualized, because everyone's story is different.

Emily Kate Stephens (52:19): That is an amazing place to end, so thank you, so, so much. Gez. Your thoughts?

Gez Medinger (52:32): I have many thoughts on that brilliant interview. Where shall I start? I think the point around psychological and emotional stress affecting our nervous system, and the fact that talking about it is controversial, because somehow if you talk about it, then that means that the condition might be in your head, and it's not physical. That's the kind of the connected logic to this idea of the problematicness of talking about emotional stress or psychological stress. But it doesn't work that way. As, as Dr. Kane spoke about in the interview, your body responds to this stresses, and you can measure it, and this has a very immediate and significant impact on your nervous system, which is one of the things that we're desperately trying to control in complex chronic illness, and I think it's just such a challenging space to navigate this when it is so complex, and some of the positions that people take are informed by some of the really terrible care that they've experienced in the last five or six years, and the reasons behind some of that as well. Benita spoke about it's such a complex space, and I just, I guess it's just empathy for everybody who's gone through such a challenging time over this period, and how do we find empathy for each other and empathy for ourselves as well in this too, because it's through that empathy that we get to a place where we can find this again, another dirty word, holistic approach to calming, to calming our nervous systems down. The other thing I thought was particularly interesting is how she sees, or how she, and again, she sort of steered away from the word, but essentially how she tried to characterize the condition, the way that she sees symptoms grouping together to create perhaps a vascular problem in an individual, or a dysautonomic problem, or small fiber neuropathy, or masal activation, or potentially autoimmune, and where these overlap, and when the kind of symptoms that are particularly specific to those problems, and also how they, how those don't fit into the existing specialties. So, who's going to treat you for your MCAS symptoms? Well, no, none of the normal specialties is necessarily going to, they're only going to look at the one symptom that fits into theirs, and I'll try and treat that as opposed to seeing the problem as a whole.

Emily Kate Stephens (54:43): As a whole. And that comment that she made about the looking at Long Covid as on condition is like lumping all autoimmune conditions together and not breaking it out into sub categories, and I think that comparison also plays into the whole idea of why do some people develop the auto immune conditions and why has does it go down that particular routine for those people and I think that's where we have to get to with Long Covid, what is the breakdown in our body that launches us into that Long Covid situation, and why does it take that route?

Gez Medinger (55:24): I completely agree. I think the other thing that she said that was particularly interesting is how she's seeing recovery in her patient group as well, years in, she's seeing people get better, but they do need some of the right support, and, and equally, the point she made about how, how important it is that a lot of that support has to come from yourself, even when it comes to a child. We all have this burden to have to try and listen to our gut to try and find the right path through this for ourselves and listen to what our body needs, and -

Emily Kate Stephens (55:52): It's really challenging, isn't it? When your body is so all over the place and you don't quite know where your body is.

Gez Medinger (55:58): And you maybe your life doesn't give you the opportunity to listen to your body, because you simply have to look after your family, you have to do whatever work you can to stay afloat, and all of these pressures that are on us in life are maybe counter to what our gut tells us we need. So, how do you plot a path through that? It's incredibly difficult.

Emily Kate Stephens (56:16): That was a point that I wanted to pick up on as well, for in terms of her saying that she let her daughter lead her own recovery, because even with a child, that idea that they do know a certain amount, and I think for those in the position that they are parents of children with these conditions, I think as a parent you do know your own child better than that medical practitioner that has seen your child for 10 minutes, and so as a carer, being able to also help guide that process with your child, I, as my child, tries to navigate this right now. I am very lucky that I have a child who's incredibly diligent and was very, very sporty before, so I understand when she says that she absolutely cannot do sport, I've said to her teachers, and her school's been incredible. I've said to her teachers, if she says she can't do it, you're absolutely not to make her do it. If she says she can't walk up the stairs, you're not to make her walk up the stairs. And I completely trust that she is not doing any of these things to get out of doing anything, but because she genuinely can't, I know that that is her personality type enables me to see that in her. But I think that we as parents, or we as partners, or we as loved ones of the person that you're seeing day to day go through this, we do have more of an understanding of what these people are going through than the people from the outside, so I strongly encourage you to advocate for what you believe in terms of that person.

Gez Medinger (57:46): Yeah, I completely agree.

Emily Kate Stephens (57:48): Thank you so much for joining me today. As always, it's a pleasure to hear your thoughts and your insights, and I look forward to us exploring with more of these people. Thank you, Gez.

Gez Medinger (58:02): My pleasure.

Emily Kate Stephens (58:12): 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.