Using Heart rate monitoring to help with pacing.

[SallyC]

I have been using a Garmin Vivosmart since the end of November last year. I was looking at the long term data and was very pleased to see my high heart rate levels are steadily dropping. It's only about 2bpm per month which isn't a lot but I'm happy with the overall trend. Day to day it often feels like nothing is changing but this is a positive thing to see.

 

[Midnattsol]

Discussion on the Heart Rate Monitor Factsheet by the Workwell Foundation can be found here: https://www.s4me.info/threads/heart-rate-monitor-factsheet-workwell-foundation.19443/

 

[SunnyK]

IIRC, that for PwME, it's likely that the normal age-based calculation is likely to overestimate our aerobic thresholds, possibly considerably.

I'm sorry I don't have a reference for that!

My mom-in-law over the weekend found an article that suggested the 0.6(220-age) formula was out-of-date, and that the current guideline was to add 15 points to one's resting heart rate. I'll ask her if she can give me the article citation for that.

 

[JemPD]

My mom-in-law over the weekend found an article that suggested the 0.6(220-age) formula was out-of-date, and that the current guideline was to add 15 points to one's resting heart rate. I'll ask her if she can give me the article citation for that.

lol mine goes well over that by the time i have stood up & walked to the bathroom

 

[Daisy]

In our HRM pacing FB group PwME & LC tend to use 220 - age x 55% or 50% for the more severely affected.

But also RHR plus 10 - 15.

It's very helpful to keep brief records of physical, cognitive, social and emotional activity, along with any stressors such as allergies, sensitivities, hormonal fluctuations, infections etc. This along with HR data can help with identifying patterns and the impact of changing activity levels

Short Factsheet from Workwell on HRM (pdf) https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf

Significant changes in HR in response to positional changes may be an indicator of dysregulation of the Autonomic Nervous System, which may manifest as POTS, orthostatic hypotension etc.

 

[perchance dreamer]

This is a little off topic for this thread, but I'm currently doing a 9-day home cardiac test because my last sleep study showed my average heart rate for the 2-day sleep study test was 30 and 31, considered too low for a nocturnal HR. My HR is normal during the day. I've been much more fatigued lately, which could make sense if my heart isn't beating fast enough during sleep to keep me properly oxygenated.

 

[forestglip]

Merged thread

Heart Rate Analysis for ME/CFS
St. Denis, Catherine

Abstract
The article explores Catherine St. Denis's Heart Rate Analysis for ME/CFS, a hybrid work blending medical insight with poetic reflection to illuminate life with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Topics include heart rate pacing as a strategy for symptom management, the physical and emotional toll of daily exertion, and the artistic expression of embodied experience.

Subjects
EXPERIMENTAL literature; POETRY writing; LITERARY style; MODERNISM (Literature); CREATIVE writing

Publication
Grain Magazine, 2025, Vol 52, Issue 3, p79

Link (Paywall)

 

[hotblack]

I saw this pop up in my alerts and thought the same so gave up. My chain of thought went “heart rate analysis looks interesting, is this a paper or something else, experimental poetry, what?”

Grain is a literary magazine in Canada.

 

[Jonathan Edwards]

Merged discussion, from Collecting papers on Evidence Based Practice for ME (plus distinction from FND)

Things like using step and heart rate monitoring

Do we know that these are useful, @Trish?
Until we have some longitudinal actimetry studies, as we have discussed in the past, I am not sure how we can know these things are important. Physiologically I cannot see any particular reason why either one or other should be important.

 

[Utsikt]

Do we know that these are useful, @Trish?
Until we have some longitudinal actimetry studies, as we have discussed in the past, I am not sure how we can know these things are important. Physiologically I cannot see any particular reason why either one or other should be important.

Step rate just gives an approximation of the amount of physical activity you’ve done. That’s probably relevant.

HR is a bit messier, because it gets affected by so many things. I have not been able to make much sense of mine, other than that it never drops below 70 when I’ve had periods of doing too much. So seeing 6x only happens when I pace well.

 

[Trish]

Do we know that these are useful, @Trish?
Until we have some longitudinal actimetry studies, as we have discussed in the past, I am not sure how we can know these things are important. Physiologically I cannot see any particular reason why either one or other should be important.

Lots of pwME find them helpful.

 

[Jonathan Edwards]

Step rate just gives an approximation of the amount of physical activity you’ve done. That’s probably relevant.

It might be, but since we have no real idea what triggers PEM it might not. Health professionals and exercise researchers have made claims about going over anaerobic thresholds, which maybe would relate more to heart rate, but we don't have any particular science that would point to the total amount of activity being relevant. It might be but it is unclear why it should be. Moreover, we have in the factsheet that trivial activity can trigger PEM, so it doesn't seem to need lots.

I don't have ME/CFS and I respect the experience of people who do but I don't think resorting to theorising helps here. I don't think we know what is 'probably relevant'.

 

[Jonathan Edwards]

Lots of pwME find them helpful.

I can understand that people do, but I find it hard to understand how you can be sure that these measures add anything to just feeling that you went too far. My guess is that the hypothalamus has a much better idea of whether or not you have done more than the PEM threshold allows because it is probably the hypothalamus that decides that. And the hypothalamus tells us what it reckons all the time.

I think it would be fair for a health care professional to say to new patients that experienced patients find these things helpful. But I don't think they should be recommending them as 'evidence based' and certainly not theory based. And I am interested to know how people know that these things actually do help because it might help me judge what is likely to be a sensible theory to test. At present I am working with the idea that the hypothalamus acts as an 'exertion accountant' in some way dependent on nerves being primed by cytokines and receptors for antibody. The accounting is clearly badly out of line if so. It reads normal levels of activity as danger signals and calls up PEM. There is nothing we can do to prevent that so it needs to be taken seriously, but we don't have a clue how this crazy accounting works or whether it correlates to anything you can measure on a Fitbit.

 

[Utsikt]

It might be, but since we have no real idea what triggers PEM it might not. Health professionals and exercise researchers have made claims about going over anaerobic thresholds, which maybe would relate more to heart rate, but we don't have any particular science that would point to the total amount of activity being relevant. It might be but it is unclear why it should be. Moreover, we have in the factsheet that trivial activity can trigger PEM, so it doesn't seem to need lots.

I don't have ME/CFS and I respect the experience of people who do but I don't think resorting to theorising helps here. I don't think we know what is 'probably relevant'.

I’m fairly certain the «trivial» in the PEM fact sheet refers to when someone very severe get PEM from next to nothing.

If you’re at least walking some steps during the day, and you’re fairly stable, going over your average of e.g. 200 steps by 100 steps is probably going to be noticeable in terms of symptoms and maybe PEM. That would still be a trivial amount of activity, but still something a smart watch might be able to track.

The use for this kind of info would be to e.g. preemptively rest more to try to avoid accumulative PEM if you notice you’ve done more physical activity than usual.

There’s also the added benefit of not having to keep track of how much physical activity you do when you struggle with brainfog.

I know that we don’t have proof that a smartwatch helps, but it would ideally be framed as a tool that some might find useful as one of many data sources for their pacing efforts.

 

[Utsikt]

And I am interested to know how people know that these things actually do help because it might help me judge what is likely to be a sensible theory to test.

Personal anecdote:
My bed is ~5 meters from the bathroom (toilet and sink is by the door), and the path splits after 3 meters where my daybed is 2 meters the other direction. There is a fridge in another room, that’s 5 more meters away from my daybed.

I can’t go from my daybed to the bathroom (4 meters), then to the fridge (9 meters) and then to the bed (10 meters, 23 in total) without getting pain and a flu-like feeling for up to a day, with a delay of onset of just up to an hour. But I do any of the shorter trips multiple times a day.

I keep forgetting this limit because I rarely have to go past it, so every time I do I get surprised by the reaction.

I had the same issue before I became bedridden, only with larger distances. As an example, I couldn’t grab food from the kitchen and go to the bathroom in the same trip. I needed maybe an hour of rest in between.

So it appears to me like I have some kind of hardcoded limit for physical activity that gives me some symptoms, but not the fullblown delayed PEM that I get from really overdoing things.

On the rare occasions that I have to leave the house and walk more than 20 meters in one go, it almost feels like when I was at the summit of Mt Kilimanjaro. You had to move really slow, and something just told you this wasn’t right - you’re not supposed to keep going in this condition.

It’s completely different from just feeling extremely tired from a lot of exertion, I didn’t even come close to that feeling even after 230km on skis in a week in -15. Then, the feeling was «I’m soo tired and in pain», not «this is not right, I shouldn’t keep going».

 

[JemPD]

Just spotted this…

And I am interested to know how people know that these things actually do help because it might help me judge what is likely to be a sensible theory to test. At present I am working with the idea that the hypothalamus acts as an 'exertion accountant' in some way dependent on nerves being primed by cytokines and receptors for antibody. The accounting is clearly badly out of line if so. It reads normal levels of activity as danger signals and calls up PEM. There is nothing we can do to prevent that so it needs to be taken seriously, but we don't have a clue how this crazy accounting works or whether it correlates to anything you can measure on a Fitbit.

im about to give HR monitoring & step counting a go.

The main thing Im hoping/expecting it to help with is this… the effects of adrenaline/cortisol make me feel much better - when I’m in fight/flight or am stressed I have the illusion of being able to do more, & because I’ve always used symptom contingent pacing thus far, it’s caused problems because when I’m stressed the body signals of ‘overdoing it’ somehow get suppressed. Only leading to worse PEM than I was expecting (or indeed leading to it hitting unexpectedly. This is further complicated by the PEM delay factor.

As I’ve become more severe and am currently experiencing a lot of heavy unavoidable life stress, the impact of not being able to judge how much I’ve done by the feel of my body or just a kind of rough guesstimate, has become a major rather than occasional problem.

I hope I explained that I not very good at putting it into words..

I just about to get an Apple Watch to try to see ifi, when stressed & therefore not getting ‘accurate’ signals from my body in terms of how much I’ve done, looking at a measurement instead might help me pull back before I go really overboard.

It’s really difficult not to overdo it when you desperately need to get things done & feel like you can.


I think we discussed this on the other thread with @Jesse about the effect of adrenaline/cortisol.


Do you want me to report back if/how it helps?

 

[Jonathan Edwards]

I’m fairly certain the «trivial» in the PEM fact sheet refers to when someone very severe get PEM from next to nothing.

I am not sure about that. Members talk about getting PEM from 'trivial' activities even if moderate I think.

The use for this kind of info would be to e.g. preemptively rest more to try to avoid accumulative PEM if you notice you’ve done more physical activity than usual.

But that assumes that there is such a thing as 'accumulative PEM' and that it reflects this or that measure of activity. Where is the evidence base for that? We don't have any theoretical base for it so far.

I know that we don’t have proof that a smartwatch helps, but it would ideally be framed as a tool that some might find useful as one of many data sources for their pacing efforts.

It might, but how are people supposed to use it? How do you calibrate what is the number to aim for? That is what I don't have any insight into. And our experience is that it health care professionals recommend trying things like this it is nearly always delivered with some sort of rationalisation as to why this is 'a good thing to do'.

We have been very critical of the lack of methodology for other people's evidence. I worry that there is a similar lack of methodology here and that it is only too easy to assume something is helpful when in fact it adds little and may even be misleading.

 

[Jonathan Edwards]

I just about to get an Apple Watch to try to see ifi, when stressed & therefore not getting ‘accurate’ signals from my body in terms of how much I’ve done

That makes sense but my worry is that PEM is not about 'how much I have done'. It is more about your brain's interpretation of what has been going on and your gut feeling may reflect that better than a Fitbit thing.

 

[Trish]

It might, but how are people supposed to use it? How do you calibrate what is the number to aim for? That is what I don't have any insight into. And our experience is that it health care professionals recommend trying things like this it is nearly always delivered with some sort of rationalisation as to why this is 'a good thing to do'.

The health professional doesn't recommend numbers, they recommend trying tracking to see if you see a pattern. If you do, then you can use it a additional information to help with symptom contingent pacing. A bit like tracking food you eat to see what might be triggering migraines or IBS.

 

[Jonathan Edwards]

The health professional doesn't recommend numbers, they recommend trying tracking to see if you see a pattern.

But we are talking about numbers aren't we - step count or heart rate?
If the health professional just suggests trying it to see if it predicts that sound OK but my thought was that that tends not to be what health professionals end up dong. They justify it with some theory about 'energy conservation' or whatever.

And you are highly intelligent, Trish. I have this picture of a certain professor of infectious disease and evidence analysis or whatever limiting his scuba diving to only five minutes for ever because he found that was what he could tolerate the first week and he was sure he had to conserve energy - until of course he heard a message from Norway!!

I really think some extended actimetry studies are needed because if they are of real value that should be objectively testable. Moreover, it would tell us what PEM does really depend on.