I just listened to a very interesting interview with Todd Davenport (Pacing and how to exercise safely in Long Covid and ME/CFS) in which he discusses using heart rate and heart rate variability to guide patients in how to stay below their PEM threshold. He said lots of interesting things - obviously, there's a lot to this topic - and rather than guddle about all over the Internet trying to patch his approach together, I'm wondering if he's produced a detailed overview, or if anyone else has summarised his approach. Ideally, I'd like the sort of comprehensive info that he'd give one of his own patients! I see we have lots of threads relating to his individual papers and presentations but I'm not seeing a 'here's how to do it' presentation. So, two questions: (1) Is there one? And (2) if there isn't, how can we get one? It would be good to see this approach, which seems to be driven by the actual science, widely available to patients.
Pacing with a heart rate monitor to minimize post-exertional malaise (PEM) in ME/CFS and long COVID https://workwellfoundation.org/paci...rtional-malaise-pem-in-me-cfs-and-long-covid/
Thanks, @Andy. That looks very good, but on a quick skim and I notice that the article recommends chest-strap heart-rate monitors, whereas in the video, Todd Davenport said he realises that patients hate them (he's not wrong!) and so even though they're not as accurate, we might want to think about arm-band monitors. That's the kind of important, detailed nuance that I wish we could see collected. I wish he'd write a book! Is he on the forum?
I have to say I personally hated using a heart rate monitor (a garmin watch) to pace. There were several things that really put me off it - a) I found it very difficult not to become slightly obsessive about it. Perhaps if I was less severe and had more distractions I'd have found this side of it easier, but having to rest for 18 plus hours a day, and having v little energy when I'm not resting means that I'm constantly slightly bored, which makes it incredibly easy to become obsessive about something like HRV. and b) it felt like I was constantly being graded on how well I was pacing (garmin has something called a body battery, and the more you overdo it, the more the body battery goes down). I did learn some things from the experience, but ultimately I found that I paced basically as well without the garmin as I did with it, and I was a bit less miserable when I ditched the garmin.
That's very interesting, Ravi. I haven’t used HRV as my Fitbit only does HR and steps. I find HR useful as an adjunct to symptom contingent pacing, for example, it gives me objective permission to stop and rest part way through a task when I might be tempted to push on. I don't have a signal like a buzz or vibration to tell me when my HR goes above a set level. It's up to me to check when I want to, so I don't feel controlled by it.
This reminds me of a parallel situation with household energy. I recently had gas and electricity smart meters fitted. This included providing a small plug in device showing constantly updated cost of energy used so far for each day. I found myself obsessing about looking at it in an unhealthy way, so I unplugged it. I can check on an app on my phone to see the recent pattern of usage over the last week if I want to, but it’s not there 'in my face' all the time.
That does sound like a much healthier approach! I've heard of ppl using HR/HRV pacing in all kinds of ways: - I know quite a few ppl who do something quite similar to you - they have a smartwatch on all the time, but only check in with it once every couple of days or so. The data allows them to get a sense of which activities put most strain on their body - I know some ppl who are *incredibly* intense about it - there's a group on Facebook dedicated specifically to HRV pacing, and you'll have ppl (some of whom are very severe) who spend weeks and months ensuring that their HR never rises above a very low threshold. I'd imagine some ppl have experienced improvement from that method, but it is a lot - The people I think could benefit most from HR/HRV pacing are those who are in the earlier stages of the illness and are perhaps more mildly affected - people who are maybe working at least part-time and are constantly overdoing it to some extent and haven't been really taught how to pace. I remember in the first year of my illness I met someone who was also in the earlier stages (and whose Long Covid looked a bit more like fibromyalgia than ME). Before she used a smart watch, she did anything from 1k to 7k steps a day (which was having a bad effect on her illness) but a smart watch helped her shift to much more consistently doing about 1.5-2k steps a day while working part time.
If your ADL mostly involve walking and your environ is mostly flat, a metronome app is a possible alternative. I did other ADLs as slowly as possible and there wasn't much else I could do more. (I still had to eat and bathe!). Walking had been most problematic, and I used to manage it by fixing the pace with metronome and rests at regular intervals. You can turn it on only when you need, and you get the feel for the pace after a while.
I found that using a monitor helped me establish the level of activity that I can tolerate, but eventually I got enough information that I don't really need it anymore. I got used to manually check my HR by hand and can estimate it close enough to know if I feel like I've overdone it, making sure I stay below 110. I don't need to know it with that much precision. Also doesn't help that after months of 24/7 use, I couldn't tolerate it anymore. Those devices are not comfortable to wear at all. I'm pretty sure it actually damaged nerves on my wrist. If my condition changes enough, it will be worth in the future to use it again to find a new baseline range, if the level of activity that gets me to 110 has changed, but although wearing it continuously provides useful information, it's really only useful to me, and that usefulness has its limits. No one else will ever check the data. But for sure I think it's worth doing for a while.
I've tried it, but there doesn't seem to be a relationship between heart rate and PEM. I kept careful records for a good few weeks, but found I can incur PEM without raising my heart rate much, and swim at 90% of the notional maximum heart rate for my age without incurring it. The type and the timing of activity seems to matter much more than heart rate, and HRV was so all over the place that it was difficult to make any sense of it. The only reliable feedback I get from heart rate monitoring is that my overnight resting RH increases noticeably when I'm ill or in PEM. It can go up from a norm of around 51 BPM to 65 or 70; the highest I've recorded for years was when I got Covid a couple of times last year (though I didn't actually feel ill with it). This is useful, because if I'm thinking of doing something that I know will take a lot out of me, I can check what it's been like the past few days first. I have my Apple Watch set to capture it all the time, and a quick squint at the graph will give me the trace for a week, or month, or a year.
