224 - From Data to Body Wisdom: When to Use (and Ditch) Heart Rate Monitoring

In part two of Jackie’s conversation with physiotherapist and Long Covid patient Robin McNelis (“Robin the Physio”), they dig into how heart rate monitors and wearables can support (or sabotage) pacing in Long Covid and ME/CFS. Robin shares both clinical and personal examples of using tech as a behaviour-change tool, not a dictator, and how it can help people eventually trust their bodies more, not less.

In This Episode:

• When heart rate monitoring is helpful and when it becomes stressful and counterproductive
• Robin’s concept of “counterintuitive” heart rate monitoring and why some people need to start with higher alert thresholds
• Real-life examples of unexpected triggers (like showering, stairs, and bending) and how tiny tweaks made big differences
• Using devices first to learn your boundaries, then turning down or off alerts to lean more on body awareness
• How to decide if tech is right for you right now: What is it helping you change? Is it reducing crashes or just adding pressure?

Key Takeaways

• Tech is optional: it’s the right tool for the right person, at the right time, in the right way.
• The goal isn’t perfect data—it’s better awareness, steadier pacing, and fewer boom-and-bust crashes.

Links:

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

Check out Part 1 of this discussion: 223 - Holistic Detective Work: Unpicking Breath, Pacing & Fatigue with Robin the Physio 

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 back to this episode of the podcast. My wonderful guest today is Robin McNellis, or Robin the Physio, and this is the second part of the conversation that we started last week, and Robin had so many great insights that I couldn't bring myself to cut any of them out, which meant that the episode went really long, so I thought the best thing to do was to cut it into two halves. And welcome back to the second half. In the previous episode, which I encourage you to listen to first, Robin talks a load about pacing and a lot of really great ways of learning to pace and to listen to your body and about all the different types of exertion and how we can start to track them, he gives some wonderful lived experience examples as well that hopefully help to make things really relevant to you. This is a continuation, so without further ado, let us continue, and you've mentioned a few times now, sort of technology and its use in pacing, and I'd love to talk a little bit about this, because I have feelings on this, and I think many of my listeners will know about that, but I think it sounds like it's something that you use, certainly with some people, and you also said that it's a tool rather than the be all and end all, and I remember asking Harry the same question when I had him on here, which was also quite an interesting discussion, so I'd love for you to talk about how you use that with people if you do, and who it can be appropriate for, who it maybe isn't appropriate for, and sort of where the cost benefit is of that.

Robin Mcnelis: 2:37

Yeah, so I think that it's something that, because I did heart rate monitoring through my time in cardiac rehab, and when I was running, then I would run to heart rate rather than to pace. They would eventually match up once that was really fit. So this was before I got on well, but even then there's place in the London Marathon that I got almost exactly the same time, the two times I did two hours 48 minutes, and the one time I ran using almost my logical brain, and so when you think about the chimp paradox that a lot of people have heard of, then there was one year I was losing it a little bit when I fell off my pace for 245 and that I was thinking, no, let's be logical, let's look at things, let's refocus, etc. Two years later, three years later, whenever it was, my data was out the window, I was thinking, yeah, that's not it's not matching up with how I feel, so I actually ignored a lot of that, and then ended up doing my personal best, and because that's what I needed on that particular day, and it was about being able to flex between going with feel, going with technology, and when to actually use each of them, and got they were completely different races, even though they're very similar times in completely different fields. So I think that was my background with a lot of heart rate monitoring, and I think that one of the things that a lot of people are really lacking is we don't have tangible things, whether it's a scan, whether it's a blood test, whether it's a marker, and we don't want to be putting people on exercise tests every couple of weeks just to see how the levels are. That's a good way to flare up their symptoms, so I think that using heart rate monitoring for people who are really looking for a metric that aren't hyper vigilant is not going to create a stressor for them, that can be a useful tool, but I always say to people it's a tool that is only going to work if you use it in the correct way, so I've had lots of people who have been desperate for that number, that thing that they have got visible, or they've got Garmin, and they're not actually using the data correctly. I've had people that will say, "Oh, I turned off the bleeps were visible because it was annoying me, and it was creating a stress response. So, then I've got to think, does it actually mean that their level hasn't been at the correct level for them? So is it the early stages they've been using the device and the algorithm still learning for them or is it that that's just not the right level for them as an individual and I can talk about counter intuitive heart rate monitoring as well but the so it's ultimately these devices, they are like a smart meter for our electricity. That smart meters do not save you money on their own. They are designed to elicit behavioral change, and if you're not switching off all the extra lights that are on unnecessarily, then you're not going to save energy and money with your smart meter. It's a bit the same with using the technology that if you're looking at the information that it's giving you and that is helping to shave your shape your behavioral change, then that's great, and that's what it's designed for. If I've had people that have sent me their visible screenshots, and it is sea of red, and they've not made any changes because they're too busy, and I've actually said to them either use it properly or don't use it because you, a lot of people are almost ticking a box of saying I'm doing pacing because I'm using visible, but unless they're actually getting using that information to actually change their behaviors, and what I would ultimately like a lot of people doing that I'm working with is I don't have all the answers straight off, work with them, see what works best for them wrong, actually looking at what they want to change, how responsive are they when they're when their alert goes off, does that actually put them further into fight or flight, or not? Does that make them sit down?

Unknown: 7:57

Is it sometimes that we're better having the alerts switched off and looking back in hindsight and seeing how things are looking for those individuals, and actually looking back and thinking, oh, at 12 o'clock I went into the red, and then didn't actually come out of the blue, even though I was resting for the rest of the day, and what did I do around that point, and then we can break it down. They've maybe had a shower at 12 o'clock, and then we work at how they showered and see if we can get them to do their post-COVID personal best of showering to keep the heart rate under control, and then the impact that has on the rest of the day, so looking at the different devices, looking at different ways of using them, if there are people that are very hyper vigilant, or if they are just not responding well to getting those, those bleeps or alerts in one way or other, whether it's vibration, whether it's whether it's sound, then you've got to think rather than thinking, well, these devices aren't good for anybody, it's maybe not right for that person at that time in their journey, or it's maybe we can use it in a different way that will not create that reaction, but will give us some good information. So, there's a lady that I work with, and this is a bit unconventional, that she wanted something to work with, and she's in, actually, in a country who doesn't have a license for Visible, and she would have liked Visible, so she actually got a Garmin. He doesn't understand most of it. She isn't good with tech, by her own admission, and she doesn't mind me saying that, and so she friended me on Garmin connect, so I could see she would literally start her monitor going before she got out of bed as a treadmill session or a yoga session, and run it for the entire day, and then when we went into our consultations, she would give me her login details, I would log on to her Garmin, as if it was her, and we'd talk through, well, the 23rd of March. What did you do in that day? Because think, and then she would go back, and, oh yeah, that look at her diary, and would work on it, and then we'd break things down without her. Getting stressed out about how she needs to be using the tech, so I think that queer people can use the tech, can help behavioral change. It doesn't stress them out. That is the best people to be working with, people who is creating a bit of a reaction, or they are not actually making behavioral changes upon it, then probably not the best for them, or they maybe need some guidance through it, and then there are people that have got variability, and there are women that are at different phases of the menstrual cycle, then their heart rate will be higher. There's a couple of women I've worked with that I've actually said to them, don't use your monitoring, don't have the alarm set in whichever week of your cycle things are off, because ultimately we are looking at this to guide your pacing, if your heart rate is going higher on everything you do because of your hormone levels at that week, then that's not actually guiding you, and it could actually be having a negative impact on you, because it will be bleeping all the time, and you're thinking, but I'm pacing really well here, or in resting, or I've rolled over in bed, and so I actually tell people to switch off, look back at it in hindsight to see how things are, and I talked a little bit about counterintuitive heart rate monitoring,

Jackie Baxter: 12:25

yeah, I'd love to know what you mean by that.

Robin Mcnelis: 12:26

If we're looking at a lot of the great work that Todd Davenport and colleagues have done with the Workwell Foundation and ME/CFS and with long COVID, that they have looked at their lactate thresholds being hit at 55% of somebody's predicted maximum heart rate, and indeed, when I set up my own lactate threshold testing without using a CPET, so you wouldn't get that same degree of post-exertional symptoms, then my rise in lactate blood lactate level was at 55% of my max heart rate, so there can be people that they're out of sync one way or the other, and their theoretical research base level, which possibly visible, will be the starting point for for them, it will be 55% of their max heart rate. I've literally got people that will go over that level over 100 times in a day, so using the monitoring with the alerts on isn't going to be helping them, it's just going to be knocking things backwards, so convention may say, well, you need to just adapt things so that we can get your heart rate lower, so we can get below that level throughout the day, which is our ultimate goal with the heart rate monitoring, but then I would be working with people and saying, look, if you're going to 140 beats per minute and you're theoretically meant to be at 90 beats per minute. Heart rate monitoring at that level isn't going to work well for you, because you literally move on the sofa and your alert goes off, and you cough, your alert goes off. So I've worked with a series of patients, but one in particular, and again she's given me permission to share our broader details around this, and it's a really good example, because she did not want to go on to beta blockers or evaporine, she had a degree of pots, but things were really out of control. So we looked at what would be the optimum heart rate level to have her alerts going on, going off at. She had it set at 100 so rather than me putting it to 90, which he thought I was going to do. I put it to, I think, it was 110 and she said, "Right, but that doesn't make sense. I'm like,"Yeah, I know so much of this condition does not make sense, but let's give it a go, because the way that you've got it set just now, and even worse, the way theoretically would be going to that's not going to work for you, so it's either we don't use that monitoring or we use it in a different way that may be working better, so leap of faith, for which I'm generally grateful of when people put their faith in me, particularly when things don't particularly make sense. But and that is not completely research backed, but we set it to 110 at the beginning of the month, she was going above 110 20 times in the month on an 20 times in a day, and after a month she'd almost worked on the low hanging fruit, so the things that were going up to 140 etc. He wasn't really going up much above 110 which meant the knock on effect. So, if you imagine, if you get out of bed in the morning, your heart rate hits 140 then you, your heart rate is not going to be very stable the rest of the day, if we can really keep that under control and identify those things and modify behaviors, then it's going to keep things more stable, so she did some really good work of identifying things about optimizing her hydration and nutrition, getting electrolytes and fluid before she put foot on the ground before in the morning, getting that 500 mils of electrolytes into her system, so her initial heart rate spike, which she had identified was the biggest spike of the day wasn't as big, now it was maybe going to 120 rather than 140 still too high, but it was better. By the end of the month, she had three on average the last week of the month that she was going above 110 So then we nudged it down to 105 and a month later, nudge it down to 100 we eventually got to 90 beats per minute without any drugs from her hitting, and she was barely going over 90 and was working really, really well with that, so it was almost taking that step backwards in the wrong direction, which is so true. People want to do more, but so often they've got to step back to reset the foundations. So we stepped in the wrong direction, the counterintuitive direction for the heart rate monitoring to work at meeting her closer to where she was at that point to then get her feeling better about things that she had a degree of control and she worked on a framework that worked well for her, then moved in the right direction, and it was a joy to see, and she managed to regain so many parts of her life working in a different way, and in a more controlled way.

Jackie Baxter: 19:11

Yeah, and I think you know it's a perfect example of where we have to meet people where they are, you know. And that sometimes, you know, instead of taking one big step, it's taking like 10 little steps. You know, we don't try to do 100% we're actually trying to do like 1% 1% and 1% So, rather than trying to get all the way down to say 90, you said, "Okay, well, I see where you are, I'm going to meet you there, and let's, let's actually treat you as an individual rather than a statistic, which is so important, isn't it? So you know, I think what I'm getting from you, and you know, I think I think we're actually more on the same page with this than I thought we were going to be, you know, is that it is very individual and it's helpful for some people in some situations, and it's not helpful for a lot of people in a lot of situations, but what I'm really getting from you, and I think your example of the marathon that you ran, the two, the two separate times, the one where you did the heart rate monitoring, and then the one where you didn't, and you were trusted your body, and did better was actually that the heart rate monitoring maybe was helpful in order to guide you into how things felt, or you know, starting to listen to your body, but actually then when you let go of that and start to really trust, having built that up, that is when you start to see those real results, and that's exactly what I would see in long COVID ME/CFS as well, that it might be something that's useful to help people get started as they're learning to pace, because pacing is hard, but then there's got there's often a time to say, okay, that's taught me something, now I'm going to let it go and really start to listen to my own body, because that's where we really can sort of holistically listen to all the threads rather than just the ones that the heart rate will pick up, right.

Robin Mcnelis: 20:55

Indeed, yeah, so when I started heart rate monitoring after I had been after watched Todd's videos and had looked at his research, and then I'd been asked actually to go and do a CPET test, so the cardiopulmonary exercise test and max out test, that in America they use as a diagnostic tool, and they do two of them 24 hours apart. I was having a lot of patients in 2020 that were having. Those tests done, but only one of them, which would basically show that their hearts and lungs were generally okay, and they were out of shape, and then they would have horrendous post-exertional symptoms, and so I pushed back on it on few occasions, and then worked with the team in Harley Street to modify sports-based lactate threshold testing to find out what my exact levels were, and then I really doubled down with the heart rate watching. This is before visible had been released, and I would have my alerts on my old polar monitor, and then eventually I was learning, so I identified three big things from that, because I thought I was pacing well, but I kept on knocking myself backwards. One of them was shouting familiar to a lot of people, so I could walk on the treadmill at 90 beats per minute. It completely controlled, was in the shower, thought I was pacing 136 beats per minute, so then changed the way that I showed, it wasn't the treadmill that was exhausting me, it was the showering storage, so changed the way I showered, that went well going upstairs, heart rate monitoring on stairs is actually quite a poor way of judging it, because it's actually a strength activity, so if anything, you're going to spike a high heart rate afterwards, so if I've got people that are using heart rate monitoring, I'll tell them don't rely on heart rate monitoring for stairs, because it's going to be afterwards, it's going to kick in, or it's going to be that strength. But for me, it was that two minutes after I'd finished doing one set of stairs, my heart rate was still increasing. That isn't a normal reaction. The other thing was I was bending down to tie my shoelaces when I was still working in the hospital at the end of a working day. Now I'd noticed that I was, I had access to work taxis, I would kind of fall into the taxi after work. I thought I'm just not pacing well enough during the day, and I, and then I thought, but I'm okay at 5o'clock is it just adrenaline by 6o'clock and collapse into a taxi. So that's when I looked at the fine detail, and I was one minute above my level by about 10 each per minute when I was bending down, so reaching down my visceral fat, pushing up on my diaphragm, increasing my intrathoracic pressure, pushing my heart rate up, and then my blood pressure dropping as I came out of that position. So I changed the way that I did my shoes, and I didn't have to bend down, and I got my evenings back, which was amazing.

Unknown: 24:33

But then I moved on, and it's what I encourage patients to do, is once you've done that kind of voyage of discovery, switch the alerts off, but have it running in the background to see how finely tuned you have got your feel to your heart rate monitoring to your symptoms, because it's all goes together, the symptoms that you get afterwards as well, and then a lot of people will go with that, they'll be using a device with the alerts off, or they actually won't be using a device, and then they've maybe made, they've had that patience, they've allowed that repair and regeneration, remodeling, and then they will get to a point where they maybe want to progress activity, but they want to know how to do it safely, and then I may say, right, let's do a nose breathing walking test, so we can get a rough estimate of where your lactate threshold is, and then, or they can actually come to me to get lactate threshold testing, and we'll work out what level is safe for them, so that they can make progression that is not graded exercise as such, because you're not pushing through the boundaries, and it's about making progress in a very safe way. So, I think that that is the different ways I'd kind of been using that,

Jackie Baxter: 26:03

and I think you've given some really great examples of, you know, places where it's useful places where it's not useful, and also where it's useful some of the time, you know, where you're using it actually in the background for data collection, so you can look back over it over the last week, or the last month, or the last year, rather than, you know, it running as something that you're looking at all the time, so I think there's lots of different. Ways of using it, and I guess it's going to be different for different people, you know, at different times in recovery, and some people are going to not want to use it at all, and some people, you know, it's a discussion, isn't it? I think, you know, and it's it's being open to it, being helpful, but also not attached to it, if it's not, I suppose,

Robin Mcnelis: 26:46

and there's lots of people that have used Garmin or have used Visible at some point, and it's probably not been the right tool for them at that point in their recovery, and I've had lots of people that, for one, they've not had any, they've had the kind of generic guidance that you will get with the Visible app or with Garmin Connect, etc. or the different things that can get bolted onto Garmin now, but they've not had any one to one, and then they'll come to me and I'll guide them through that, and they'll say, "Yeah, that's different to the way that I used it before, and they will actually find, or wasn't using it correctly, and I said, well, you may be using it in a different way, but also maybe wasn't the right tool for you at that point in your journey, and this maybe is a better time, and then we may stop using it, and then we, we may reintroduce it, the one thing that I do kind of really say to people is, if they're going to use it, be clear about what they're using it for. Why are you using it? What are you getting out of it? What is it helping you to change, and I've had lots of people that they will just use their device when they're going out for a walk, but they are having a shower, they're hanging up laundry, they're doing cooking, they don't have a clue what their artery monitoring is doing there, so I'm saying, looking at everything all together, and we know the people that we worked with, with the team that I worked with in Harley Street, the people who actually, if they came in with a hold of notes, you didn't even need to know what the notes said in them, you knew that they were going to be doing better than the people who had had the testing and had said, yeah, I kind of stick it on sometimes when I'm going out for a walk, if I remember, you know, and data shows from various different studies that they don't do as well as the people that are being aware without being hyper vigilant, and it would also batter back to people that don't want to use monitoring in one way or the other, whether it's heart rate monitoring, whether it's activity monitoring, like key active, or the various different other things. How good is your awareness of your symptoms?

Jackie Baxter: 29:24

Yeah,

Robin Mcnelis: 29:24

now if people, I've got, I've got really good awareness of their symptoms, and I will say, right, you, you don't need monitoring, you need, you just need to know when to be stopping, so almost the early warning signs of if you're getting a little bit of visual disturbance before you get tingling in your face, before you get a headache, before you go into a migraine that puts you in bed, then tuning into those early symptoms, which, when you're really overwhelmed and everything's bad, you can pick out what those are. Lots of people who have had migraines will tell me that they're getting new symptoms because they've got tinnitus now and I'll say to them, well, how's your headaches? How's your migraines? Oh, they're almost gone, almost gone, they're zero or one out of five. How's your tinnitus? How bad is it? Oh, it's about two out of five, but I've never really noticed it that much. It was always there a bit, and I said, well, when your migraines were five out of five, four out of five, it was your tinnitus. It was about two out of five, and it's because they've got more clarity, and I use the example of an orthopedics. Quite often, people will find they find that if they've had, they've broken their hip, they don't realize they've broken their ankle until their hips being repaired because nobody's looked at their ankle because they've not been getting pain there because the pain in the hip is just overwhelming, it's more central and and it's a lot worse in severity for them, so so it's I think it's been flexible for each individual working out which it's not just even the do you use a device, do you not use a device, it's do you use a device. What is the right device for you, and which bits of it are you going to be completely ignoring, and which bits are you going to be focusing in on? For instance, that the early mob. Link scores on invisible, I've been paying less attention to recently, and then for my patients, rather than for me, I stopped using them a while ago personally, where there's other bits invisible that I think is really useful, average heart rate, I see limited value in. I've had people that their average heart rate's been going down, but that's because they've been doing lots of activity in the morning and being wiped out and been in bed the rest of the day, whereas before they'd been doing bite-sized chunks during the day, so their average heart rates went down, but it's not completely meaningful. So I think it's a bit of a minefield of knowing which bits to look at for you as an individual and which bits to completely just not what they're looking at,

Jackie Baxter: 32:25

right? It's the right tool for the right person at the right time and in the right way, isn't it? And as you said, is it? Is it what is it doing for you? And if it is helping, then maybe there's value in it. And actually, if it's just another thing that you have to do and it's not giving you any value, then then it's probably not helping, certainly in the form that you're doing it. And I think you're so right, about, you know, awareness is the most important thing. So, if it's helping you with that in a helpful way, then, then great, and if it's not, then then what? Like you doing

Robin Mcnelis: 32:59

it? An example that I give to people from my past world is that when I first started doing heart rate monitoring about 2000 1004 2005 when your heart rate monitoring and your GPS was really coming more accessible to individuals, I could actually, I would be really focused on the heart rate monitoring, and then I got to a point that I could tell when my heart rate was 169 beats per minute against 171 beats per minute, so when I crossed that threshold, I would know and would glance at my watch and almost be smug to say, yep, I'm still, I'm still that good. I can still tell it, and ultimately, whether it's running or anything else, if you can use that device to tie in with your field to give you better awareness of when you cross certain thresholds, what heart rate looks like, and what the feel like looks like, put them together, then you don't need to be getting the reminder set on on a lot of these things unless you find it useful as an individual, some people do, people that people say, oh yeah, it gets me really disciplined, and particularly the people that are all or nothing that they, when they're looking at getting, I often say it's almost like if you think of an apron that is blue and white stripes, that of that active zone rest on active zone rest on that's kind of what we're looking at, rather than going into red and then being blue the rest of the day, then white for all of other days when you've just not been moving about that much, so we have that consistency.

Jackie Baxter: 34:57

Yeah, okay, that's yeah, that's really interesting. Awesome. Well, that sounds like a really great place to leave it. I feel like we could talk for like another few hours, and we would still be going. So, Robin, thank you so much for coming along. Thank you for sharing your experience and your wisdom, and hopefully it has been helpful for people listening in, I'm sure, all sorts of different ways. So, yeah, thank you so much.

Robin Mcnelis: 35:23

Thank you for having me. And, yeah, it's been a pleasure, and yes, I think we probably could talk all day, so and if there's anything else that you or any of your listeners want me to talk about in the future, then if we can get our diaries synced to that, we can do this again.

Jackie Baxter: 35:41

I would absolutely love to. Thank you.