223 - Holistic Detective Work: Unpicking Breath, Pacing & Fatigue with Robin the Physio

Jackie is joined by Robin McNelis (Robin the Physio), a cardio‑respiratory physio and Long Covid specialist, who went from running marathons and leading hospital services to his own Long Covid recovery journey.

In this episode:

• What happens when all your tests are “normal” but you’re clearly not.
• Robin’s role as a “holistic detective” for complex breathing, fatigue and Long Covid cases.
• How ideas from elite sport and marginal gains translate to people just trying to shower or get to the bathroom without crashing.
• The reality of post‑Covid personal bests and why “small” wins matter.
• A practical, compassionate look at pacing across physical, cognitive, emotional and social exertion, using the FITT principles.
• Real‑life stories of patients reclaiming reading, hobbies and daily life through tiny, well‑timed adjustments.

This is Part 1 of the conversation - tune in next week for more on pacing, heart rate, breathing, and tools to support recovery.

Links:

More about Robin: http://www.robinthephysio.co.uk

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter: 0:45

Hello, and welcome to this episode of the podcast. I am delighted to be joined today by Robin McNellis, or Robin the Physio, for those who don't want to have the conversation of how do I say your second name that we've just had. So, Robin, it's lovely to have you here. I think today we're going to get into all sorts of stuff, along pacing and heart rate and breathing, of course. So, we've got loads and loads of threads to pull today, and I'm super excited to get into this. So, thank you so much for being here.

Robin Mcnelis: 1:18

Well, thank you for having me.

Jackie Baxter: 1:20

We've been in touch for quite a long time, I think, so I'm really excited that we've finally managed to actually have a date that works for both of us. Before we start, would you be able to say a little bit about yourself and what it is that you do?

Robin Mcnelis: 1:36

Yeah, so a little bit of the background was that I was running marathons, I was working in the biggest private hospital in the country as a lead cardio respiratory physio, and then I got COVID, and then got long COVID, and part of my job before I got unwell was I'd been working in breathing pattern disorders since 1999 and had developed my practice over the years, and then had gained a bit of a reputation that when all the doctors had been doing investigations and nothing was fitting into their nice boxes that we all talk about, they would send the patients my direction to say, Robin, we don't know what's going on with this person, all the investigations are fine, but they're not fine. Could you have a look? And then, as reputation grew, I got more and more of that. So then, when Covid hit, and then long Covid started to be such a problem in the summer of 2020 I got asked to lead up the long COVID service at the Wellington Hospital, and then went on to see a lot of patients there, but then the travel was getting too much from Essex and to Central London, so I went to the NHS to lead a long COVID service in the community in North London, and indeed I was the long COVID service, because they couldn't recruit anybody else, but had the joy of working under UCLH, so had some really good links there, and learned loads there, but unfortunately, as no doubt lots of people can relate to reasonable adjustments were not put in place as they should have been, so I ended up leaving and not really knowing where I would go and set up privately, and then I've been doing cardio respiratory privately for the last two and a half years and have been working predominantly in long COVID, either under my own practice or the Long COVID clinic with Benita Kane and the multi-disciplinary team there, and, and, yeah, so then that's brought me to where I am today, and to speaking to you about what I do, and where I maybe do things slightly different, or so my patients tell me to what they've been told before,

Jackie Baxter: 4:15

you know, it's like an origin story, isn't it? You would say in the sort of superhero world, you know, and it's you were actually working not in this exact space, but actually surprisingly close to this space, but without realizing before you became unwell, and you know that has kind of allowed you to get a bit of a leg up into the place that you're now currently working in, and you described patients got sent to me when all of their tests came back normal, and the doctor didn't know what to do, and I'm thinking that sounds awfully familiar, for kind of long Covid and ME/CFS, doesn't it? You know, we can't see anything visibly wrong, and yet there clearly is something wrong, so sort of shrug kind of thing. Well, we'll pass you on to somebody else, and you know, thankfully, there are people who are able to help in that situation, but it's finding that person for the patient is not always easy, and I think you and I both will fulfill that role in possibly slightly different ways, but it's the kind of, we don't really know what to do kind of space,

Unknown: 5:26

yeah.

Jackie Baxter: 5:26

And how do those two spaces feel to you? You know, the sort of pre-COVID take these awkward patients, and the sort of post-COVID take these awkward patients.

Unknown: 5:36

I think with some aspects of it broadly speaking, so I had a young patient who got asked. See who had a diagnosis of diagnosis of autism, as well as long COVID, which we know neurodivergence and long COVID. There's a massive overlap, and his mum had warned me that, or he can be quite challenging, etc. because he is very much in his routine, and when I said that, I looked at things holistically from all the different things about how the breathing, the pots, if somebody has pots, the pacing and sleeping, everything else all plays into each other. So he said to me, so are you a holistic detective? Then, and apparently there is a series of novels about a holistic detective, and I initially kind of played it down and says, no, no, I'm a holistic therapist, I suppose, even though I'm a physiotherapist, and then when I reflected on it with him during the consultation, I said, you know, you've raised a good point that a lot of the people that I'm working with before COVID came along and since the medical profession likes that model of somebody's got a symptom, then we'll do some tests, we'll get a diagnosis, and pills or surgery will sort them out, and a lot of the things I work with, the tests come back normal, and that was the case with this young lad, and I said, so what I've got to do is look at the individual, the person, and do a little bit of detective work, and how do we look at the symptoms, look at what has been excluded, so if somebody's short of breath, we of course want to know that they aren't at risk of having a blood clot or heart problems, etc. If that's all been cleared, well, what other mechanisms could be causing their breathing not to be correct, and as you and I know, looking at breathing pattern disorders, looking at nose diaphragm, rate, rhythm, depth, etc. and yet, so often, if the lung function tests are fine, even if somebody's an open mouth breather with upper chest rattic breathing pattern, the medical professions aren't picking up, so I think that the fatigue that I had had a little bit of exposure to the post-exertional malaise, because actually new people, a few people who had me many years ago, and I used to very much draw the distinction of there's people who chronically tired and there's people who have had physiological changes that if they go on holiday for a week they're not going to be feeling better, whereas the people who have their lifestyle has been out of control, then they may well be having a reset and they just need to manage their life differently, so I think that the certain aspects of it were similar, certain aspects were different, and I think that as well there's been certain aspects of I used to work with breathing pattern disorders in my athletics coaching clients and how optimizing your breathing can optimize your performance. So, of course, there's lots of things that, for all that, that's maybe about the sporting environment, bringing it back down to well, instead of running a marathon quicker, if it means that you can get to the toilet in time, because your breathing is working better, then that's performance for you on a day-to-day basis, for a lot of the people that I'm working with, and also there's the aspect that there's a lot of people that they're sick, fed up with hearing about being ill because they were high achievers, high performers beforehand, so if I can actually be talking about marginal gains about performance improvement that fits better into their psychiatric times, and as one patient said to me, well, if you could give me 10 marginal gains, each of them gave me a 1% performance improvement, I would take a 10% performance improvement, and that could turn into a virtuous circle rather than a vicious downward spiral. So, so, yeah, so there's.. I think there's a lot of the principles are quite similar. It's just some of the emerging science is a bit different,

Jackie Baxter: 10:26

and I think that's such a nice way of looking at it as well, with the kind of performance versus health, or you know, athletes versus, you know, someone who's in recovery, and I remember David Petrino talking about this, and he said that, you know, he was working with really high-end athletes all. So the opposite end of the scale, you know, the people with long COVID, me, who are, you know, you know, often very emo, completely immobile, if not very immobile, and he said it was amazing how similar some of the things that he was looking at was, because it was those, as you said, very marginal gains, you know, with a high-end athlete, you're trying to get every little last bit out of them in terms of efficiency and performance, and exactly the same thing is true of someone with long COVID, but for totally different reasons. You know, you, as you said, you know, trying to get to the bathroom, or you know, you want to be able to do one little thing that brings you joy without it having horrible consequences. Well, how can we make that work for you, kind of thing. There's a lot of crossover, even despite them looking like completely opposite ends of the spectrum, which they obviously are in a lot of ways. It's how does it work for each individual person as well, isn't it? You know, how can you.. I don't know if selling it to them is quite the right word, but you know it's how can you get someone to commit to something, because as you said, you know, if you can start some of these patterns and start getting something to shift, then often things might start to shift quite quickly, but it's how can you get that started is often the most challenging bit, I think. Certainly, what I've seen

Unknown: 12:47

did, and I think that it, it's speaking to the individuals, it's building that rapport, and it's finding out what makes them tick, and you're talking about the similarities and differences. I remember back in 2004 I went to the Marathon Medicine Conference the day before the London Marathon, and bought the book on marathon medicine. So we're looking well over 20 years ago, and two of the things that were presented on that day were about over training under performance syndrome, which, if I've had people that have been good level athletes, then talking about that, it really fits in, because they've heard of that in the past, and of course we know that there's so many females impacted by long COVID, so looking at relative energy deficiency syndrome where they are working really hard, they're eating lots, but it's messing up their menstrual cycle, the bone density, they're fatigued, etc. And there is just so much similarity with, with that as well, when you're looking at some of those individuals, that they are very much focused on the performance aspect of things. When you can bring those kind of things in and say, look, this is what I would work with an athlete doing, it's the same principles, it's just that the activity is less, and indeed, when I often talk about post-COVID personal bests, and because, of course, being a runner, I was very focused on personal bests, although it was getting a bit old for that, and then, but my first post-COVID personal best was having a shower, keeping my heart rate under 100 beats per minute, and not having any pen, and when you think about it, then that was actually more meaningful to life than did I do a 305 marathon or a 255 marathon, apart from personal pride and getting another entry to the London marathon, that didn't really matter, where if I did done four hours, then it still wouldn't have mattered in the greater picture of life, whereas being able to shower and not being able to shower is massive. So, between using heart rate monitoring and various different other ways of looking at what did my showering look like, how could I break it down, how could I keep everything under control and not be wiped out afterwards.

Jackie Baxter: 15:37

I love that, because I think, you know, I mean, again, there's there's no blame here, you know, it's like it's a different world, isn't it? Often when you become unwell with something like long COVID, and you realize that you know some of the things that you were worried about before, they maybe felt really big and important at the time, but actually maybe they weren't quite so big, because right now I'm actually stuck on the floor and I can't move, or you know, whatever each individual sort of version of that is, and I think you know certainly for me, that's one of the beauties of life beyond is that I do find myself not stressing over the stupid stuff in the same way that I did before, you know, and being grateful for the little things, and as you said, celebrating those, those little wins, or your, your post-covered personal bests, I like that. You know, because, yeah, you know, they're meaningful, and they feel meaningful, and it's important to celebrate them, despite it's very easy to kind of dismiss that, isn't it? Oh, well, you know, normal people take a shower, that's not a big deal. Well, actually, to you in this moment, it is a huge deal. So, yes, celebrate it, you know, and I think we have to remember to do that, don't we?

Unknown: 16:50

Indeed, and of course, there's lots of people that I work with that they will say, because they've maybe been seeing some of the podcasts or YouTubes that I've done before. Oh yeah, I'm never a marathon runner, I'm never going to be, got no interest in that, I wasn't like you, but then when they describe their life, they've maybe not been going out and doing the miles on the road, but one of the examples often give is somebody who had a son who was neurodiverse and a father who had dementia and was trying to care for them both, and work, and so she wasn't an athlete, she wasn't in a very what we'd classically describe as a driven job, but she was, she was working right to her limit all the time through practical things, keeping the family's heads above water, as it were, and then she got COVID, and because there's lots of people that it's about seeing the things that work for that individual, and I've worked with way over 1000 long COVID and any patients now in the last five years, and for all that, there we see people who work with me, because they can relate to a lot of the things. There's lots of anecdotes that I will relate to them confidentially about past patients that will link up with them, and their stories, and their pattern, and their motivations, and interests and their journey, so it's about working out what tact to play with each individual patient to their needs, wants, and part of their journey that they're on at that particular time.

Jackie Baxter: 18:43

Yeah, and you like you were saying before about being the holistic detective, which I absolutely love, by the way. You know, it is. It's looking at each individual person as an individual, and, and how, you know, how that kind of builds up, whether it's physical exercise, or whether it's, you know, stressful situations, or care situations, or work, or, you know, whatever that looks like, it's not just the kind of pushing yourself physically that adds to the pile, is it? And I think that's, you know, that kind of leads us in quite nicely to what we were going to talk about with kind of pacing and stuff, because one of the things that I found the hardest was it was very easy to know when you were physically moving and when you weren't physically moving. It wasn't so easy to actually rest, because I wasn't very good at that, but it was easy to tell I'm either moving or I'm not, whereas those other exertions, you know, your cognitive exertions, your emotional exertions, which can be very unpredictable, you know, all of these other sort of stresses in your life. It's very difficult to kind of measure objectively all of those things together, and I think this is why pacing is just so difficult, isn't it? Partly because it's difficult to know what it is, but also because it can be very unpredictable with, with stuff that goes on around you, and I would love for you to kind of talk a little bit about, you know, how you'd approach pacing with people, and, and how you can sort of overcome some of those obstacles, if you will.

Unknown: 20:22

Yeah, so it is an absolute minefield. I have made lots of mistakes along the way, so I really need to say to people a lot of the time that I'm trying not to be critical here, because any mistakes you've made I probably made as well, and I am being a bit of a devil's advocate to try to work out what the trigger factors have been for you as an individual, that doesn't mean that you've been doing things wrong all the time. It's just thinking with a bit of fine tuning, and we help help you move in the right direction. And ultimately, if pacing was easy, then we wouldn't be doing this, we would have jobs if doing pacing, doing breathing was just straightforward. Then we wouldn't be having to be there, because there wouldn't be the demand for it. It would just be, oh, there's some resources that go. Gave us, and then I'm all fixed now, so I think that I look at things you said about how, how do my work pre and post Covid compare what I always looked at, whether it's cardiac or respiratory or breathing pattern disorders or fatigue based, I would be looking at what is the trigger factor or multiple trigger factors that will elicit symptom or a collection of symptoms, and that's very true with what I'm doing now, that principle of looking out what is there that will trigger people, so whether it is something that is physical and that can be physical and causing a heart rate response, but equally it can be physical and not eliciting a heart rate response, but is still a massive exertion, so we probably come on to talking about different tech devices later, but for all that I love them and work with them a lot, for one, they're not for everybody, and for two, they're not the be all and end all, they are a useful tool, and even when you listen to Harry Leaming, who is visible, he knows that they're not the be all and end all, but they're a tool that is useful for some individuals. So I'd be looking at physical exertions, and one of the phrases that a lot of my patients really like is hands away from heart is harder, so if people are reaching out, if they're reaching up, doing hair, etc. if they're reaching down, doing shoes, etc. If your hands are away from your body, from that kind of pelvis to mid chest level, everything's harder, and that will sometimes spike a heart rate, but sometimes it won't, but it's still your body working really inefficiently. So I look at the different physical things, I'll look at cognitive, because what, how much cognition are you using? What is the complexities? So people will often say to me, well, in working with visible or garment, I've taken on board what you've said about if you're using a lot of muscle or work using muscle in an inefficient positioning, then that will be harder, but what about cognitive, what about social, what about sensory? So then with cognitive, there will be things like that. How hard are you finding it? How challenging is it? So, taking reading as an example, I had a young lady that she was passionate about reading, she was super intelligent, she would be reading English literature for fun, but then it would wipe her out for days after about 15 minutes, and I said to look at the complexity of the language, look at the books that you're reading, how well spaced out are the words, what is the type like, and what's the size of the type, and etc. What are the themes? What's the complexity of the language? What are the story lines and plots? Are you using a lot of, oh, who did it, or is it really stirring up emotions, and that is what the intensity is around from that cognitive point of view, and I use fit principles. I don't know if you've heard of that - frequency, intensity, type, and time. It's very well used in a lot of physical things, but it can be adapted to cognitive to emotional, etc. So I would say to her and to other people that for reading, then it might be that the intensity was higher because the language was more complex, that it was smaller type closer together, and I actually said to this individual, you need to be thinking about something that is reading, so the type of activities to that reading, but something that you can do more frequently for longer periods of time, because it's less intensity. So ultimately, if your mum gave you a book to read, you would be insulted because it's way below your reading age. So she actually came back onto the next, the next appointment, and she'd been reading Harry Potter, and she knew what all the story lines were, because she's watched the movies, it was bigger type, it was well spaced out, it was more simplistic language. And she could read for half an hour, four times a day, and get no reaction to it, so it gave her that joy back of reading whilst not triggering symptoms, and just doing things in a different way, and actually getting permission to not be trying to strive for the best, and everything that was drilled in so often at schools, the actual reading for fun, and seeing that something that maybe wasn't age appropriate to her reading age, she could still get joy from equally people doing Sudoku, doing the easy ones rather than the challenging ones, so be looking at the other types of exertion, so you are sensory. The more things that are going on, the tougher it will be. The social brings in everything, and emotional is really challenging to control, so it is about keeping energy in the imaginary battery or in the tank, because you could have that emotional thing that would come along towards the end of the day, possibly knock you over the edge. They often say to people, keep that energy in the tank for the just in case, and the worst that could happen is that it will be that you've not used that energy, which can help with repair, regeneration, remodeling, etc. and give you, hopefully, a better sleep, because people will have not been doing nothing and not be overdoing things, they're hitting that sweet spot in the middle across all the different levels and types of exertion, and so one of the things I've also noticed is when I'm using the fit principles with people, we've got the frequency, so How often do you do things during a day compared with true rest. How much do you break things down into bite-sized chunks? So people can get that from a frequency point of view, very aligned with the kind of the spoons theory and principles, but then the other thing that, particularly the people that I, who haven't been hyper vigilant, but have been hyper interested in a lot of the data collection, we've really noticed that the infrequency part of frequency is playing a massive part, and when I spoke, when I speak to people about it, and you probably see the same of, oh yeah, that makes sense. I can relate to that, though. That if people haven't done things for a while, then it takes a far greater impact upon them, that it's maybe low intensity, it's maybe a short period of time, and something they've done all their life, but if they haven't done it for a period of time, whatever that may be, a month, a year, six years, for instance, and then they do it because they're doing similar activities in of similar exertion and having no reaction, they will have a far greater reaction, so one of the classic examples always use with patients' permission. In fact, he's quite happy that he gets talked about that. He had worked really well with me, and he'd actually said that when we met, he thought that I was doing a bit of a sales pitch, and he thought, if I can get 50% of what Robin says, I will be delighted. He's now describing it at 150% of what I had said, and that took time, a lot of patience, and a lot of data collection for him, because that's what made him tick. He was actually using visible and Garmin, but picking out the bits that worked well for him, that would be information overload for most of my patients, and for me, but he built up to be able to do a lot of exertion, keeping things within a good level, and then he was going fishing for the first time in years, planned everything out was prioritizing was planning, pacing. I'd put in pause breaks before he was forced to stop, taking that patience off when he was feeling better not to do more, and so everything was very controlled. He was using visible, so he had these pace points that were nice and stable, and he could manage things well with that, and he would be between eight to 12 pace points per day. He went fishing for the first time, he had everything well controlled, spread out the prep, the doing the putting away over three days. And he hit 37 pacepoints in on the first day, but felt okay, needless to say, he hadn't spoken to me in the following week when he went and did it again, because he hadn't crashed, he'd felt okay afterwards, but was really cautious because of what the data had said, the next week his pace point was 17, the next week there were 12. Now that cannot be physical conditioning, that has got to be the reaction. So I know that you've done stuff with Nadine and Nadine, and I work really closely and about the nervous system regulation and the different things that play a part, so it's almost like your body is going on to bit of a defensive survival mode, because it's perceiving these unfamiliar activities as threat, and then as long as you do it in a controlled way, it doesn't have a great impact on you, do it again fairly soon, so that it becomes normalized, and that guy's now doing brilliantly. I checked in with him last week, saying you asked me to check in, see if you need another appointment. He's got everything really controlled, he's using his tech a lot less, it's almost there, just in a background. He's loving his fishing, he's loving going out walking, but it's just a joy to hear. So, so that was a bit about the frequency and in frequency, there's the intensity, the type, and then the time that people are working for, so whether that's each bite-sized chunk or whether that's collected, because both are individually important, but in collaborations are important as well.

Jackie Baxter: 33:21

That's amazing as well, isn't it? And, like, I think you're so right that that unfamiliarity, you know, familiarity feels very safe, even if it's uncomfortable familiarity sometimes, but that familiarity feels very safe in our body, where as soon as it's something that's unfamiliar, even if it's something that we're really excited by, or that we really want to do, or that we really enjoy, it's still that got up, got that unsafety of unfamiliarity, so it's why it's so important to do it in a way that feels safe, so you know, I often say to people, well, visualize it before you do it, and then you know, do it for five minutes before you do it for a time, before you then do it for a whole day, kind of thing. So it's like, what is going to be safe for you, and that's going to be different for each individual person, because everyone's different, and some people can go a lot faster, and some people need to go very, very slowly, but it's that. How is this going to be safe for you? And I absolutely love that you're your person, you know, acknowledged that and recognized it, and is now able to, you know, to do it without that, but it's.. it just goes to show, doesn't it? How all of these things are interconnected, and you know, we can't do one without the other, you know, and it is all, you know, well, as you said, individualized as well. Now, what we're going to do is hit pause, just there, because Robin has so many more amazing insights that I think it deserves a different episode, so tune in next week for the conclusion to this wonderful conversation, and we will both see you then.