Using Heart rate monitoring to help with pacing.

Kiristar said:
There was a question about energy conservation / pacing.

Just to say I found overnight hrv a better , simpler pattern indicator of where I am in my pacing vs pem battle rather than micro managing steps or heart rate tracking. A low or excessively high score tells me I have triggered pem and need to be extra careful. Logging lots of symptoms or health data is beyond me now I am severe.

Visible app uses it although I didn't find their proprietary black box score system as accurate as the one my smart watches use (I've used polar and garmin with consistent results) .

Before anyone jumps in, I'm not sure what evidence base the visible team used to develop their app and don't want to derail the conversation, just wanted to flag it because it is distinct from detailed hrm tracking but tends to get lumped together with it. I am sure there will be a discussion thread on visible elsewhere.

Admin - I wasn't sure where to post, if this fits better on the other thread feel free to move.
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Visible is based on the workwell foundation HRM advice. The heart rate zones they use can be customised if you don’t like the ones they suggest to you.
 
EndME said:
How would heart activity play a role if beta blockers seem to have no worthwhile effect?
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I've recently moved from beta blockers to ivabradine. They have a worthwhile effect but don't get rid of the problem entirely. Fir me they lessen the effect a lot which means I can get out of bed and not rest for hours after everything. But, I still struggle to leave the house for max an hour.
 
MrMagoo said:
Visible is based on the workwell foundation HRM advice. The heart rate zones they use can be customised if you don’t like the ones they suggest to you.
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I'm talking about hrv which was a single black box output score (out of ten I think it was and RAG, at least when I was a subscriber) rather than the actual calculated hrv, not heart rate monitor pacing which uses zones.
The two are different but often confused . Visible used a spot morning measure for hrv. I found the overnight measurements done by smart watches and oura to be more accurate and better correlated with my symptoms pattern. In particular visible always gave my too high hrv results as green/good when in fact they were a result of pem onset and I needed to be reducing activity.
 
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Kiristar said:
I'm talking about hrv which was a single black box output score (out of ten I think it was and RAG, at least when I was a subscriber) rather than the actual calculated hrv, not heart rate monitor pacing which uses zones.
The two are different but often confused . Visible used a spot morning measure for hrv. I found the overnight measurements done by smart watches and oura to be more accurate and better correlated with my symptoms pattern. In particular visible always gave my too high hrv results as green/good when in fact they were a result of pem onset and I needed to be reducing activity.
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Oh I don’t pay any attention to that score thing.
 
EndME said:
How would heart activity play a role if beta blockers seem to have no worthwhile effect?
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Presumably beta blockers do not completely stop shifts in cardiac output, otherwise people would not tolerate them? And they don't alter cholinergic vagal signalling directly. I agree that one might hope hbeta blockade might have an effect but maybe it hits the wrong signals?
 
PrairieLights said:
I don't think I even have the brain energy to read most articles on the forum...
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I am moderate now with physical PEM but the brain is still more severe. I struggle with boredom and it is tortuous to lie in bed having to rest the brain all the time. I feel so unproductive. Even after all the years of ME I experience the keeping from mental PEM is the hardest for me due to the boredom and trying not to go insane type thing.

I have noticed heart rate feeling like it causes PEM and have mentioned it years ago. I said I have to watch I don't get my heart rate up. I have never used a monitor though to confirm. My feeling is that it could be coming from the OI side but could be wrong.
 
AliceLily said:
I am moderate now with physical PEM but the brain is still more severe. I struggle with boredom and it is tortuous to lie in bed having to rest the brain all the time. I feel so unproductive. Even after all the years of ME I experience the keeping from mental PEM is the hardest for me due to the boredom and trying not to go insane type thing.

I have noticed heart rate feeling like it causes PEM and have mentioned it years ago. I said I have to watch I don't get my heart rate up. I have never used a monitor though to confirm. My feeling is that it could be coming from the OI side but could be wrong.
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I'd agree on the OI side too (and also don't have a monitor but am considering it, just struggling with completing the cognitive task of what I need to think about to buy one that I will actually use).

I've noticed recently when I'm in PEM, and particularly when I'm getting to the more bored end of it having been ill eg for a few days and push myself more upright (not upright, just using pillows for an angle where I can use laptop or drink a drink and I couldn't do it without every part of my body and head completely supported and 'cuddled') my heart can feel more like those times where eg I had a bad cold and realised I shouldn't be walking that fast or something - I'm hoping npeople know what I mean by it feeling under more 'strain' when I had bug but only noticing when it surprised me as I'd done something and had that heart thudding a bit more thing. I do get breathless too and think that might be OI related when I'm in PEM.

I probably noticed it more because I went through a kid myself phase of seeing if trying to force myself to sit up more made me better or worse for a number of weeks in case 'giving into it' wasn't helping.

That's not to say that eg when I had steep stairs as an issue for a while that didn't give me the more constant breathlessness issue more particularly when I'd had to do it past my limit.
 
Jonathan Edwards said:
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.
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I've done lots of experiment 15 years ago and saw a clear relationship between amount/intensity of exercise at PEM threshold. Yes, it was n=1 and unblinded. But I think it'll tell us a lot if we can profile the relationship between duration/intensity/rest and PEM trigger rather than putting the patient on a stationary bike and have them pedal as hard as they can. Not sure about the ethics of such studies though. It will necessarily involve intentional triggering of PEM unless there is a way to detect impending PEM. If there were, we'd have a solution to prevent PEM. Observational studies could be possibilities.

Moreover, we have in the factsheet that trivial activity can trigger PEM, so it doesn't seem to need lots.
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PEM threshold is different from patient to patient. That does not mean that it is random or variable for a patient. The constants and coefficients may be different for each patient, but I'll bet the relationship between exercise and PEM holds for all patients. At least it does for me. Rather precisely I might add.
 
poetinsf said:
Not sure about the ethics of such studies though. It will necessarily involve intentional triggering of PEM unless there is a way to detect impending PEM. If there were, we'd have a solution to prevent PEM. Observational studies could be possibilities.
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One of my biggest wishes for ME/CFS is for a good in vitro test for PEM, using a tissue or fluid sample. That would do the job nicely. Then they could research it to their heart's content, without any risk to the patient.

Also raises the possibility of a cheap at home test so that patients could use it as a tool to manage PEM. Kinda like how diabetics manage their disease with blood sugar tests.

Jonathan Edwards said:
That is what individual members have stated - that there is a considerable unpredictability. Moreover, it seems that major 'crashes' are pretty had to predict.
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It is a very steep, long, and hard learning curve to be able to understand the basic pattern and starting even semi-reliably predicting, and hence avoiding or minimising, PEM at the individual level.

I can do it fairly well now. But that is with more than four decades of enforced practice, all day every day of that forty plus years.

Not exactly an ideal method.
 
Jonathan Edwards said:
That is what individual members have stated - that there is a considerable unpredictability.
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Seems to be the case for people who're moderately ill at least.

bobbler said:
I'm hoping npeople know what I mean by it feeling under more 'strain'
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Yep. In my case it's nearly always low blood pressure that's making my heart work harder.

Sometimes I've got both low blood pressure and a low heart rate. I felt like this a couple of weeks ago and the monitor showed 88/61 and a heart rate of 42 bpm, which explained why standing up was even harder than usual.

It's been happening periodically for decades. I can't see a link with anything in particular, so it's in my Just One Of Those Things tray. It always goes away on its own.
 
Jonathan Edwards said:
Utsikt is saying that PEM risk limits the distance that can be walked/struggled during the day - essentially a 'step count' limit.

Heart rate monitoring presumably focuses on not taking the rate of activity too high.
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This is mostly because cost is relative to budget, and accuracy is more important than precision. Unless it needs to be very precise, but even basic accuracy still needs some level of precision, of counting exactly, as otherwise it's just guesstimating.

Relating to a budget, someone whose income is always below basic necessities will have to count every dollar. Meanwhile someone who has some slack in their budget may only take a cursory look to make sure they don't deviate, while following a rather strict budget, while people in higher brackets can pretty much stop bothering beyond merely glancing every once in a while. Or at all, if they are fully wealthy/healthy. Precision matters less as it grows, because each absolute increase has a lower relative value.

Meanwhile someone who is far below a poverty wage, someone living with severe ME/CFS, not only has to watch for every dollar but every single penny, and even has to precisely take into account future budgets, because for them going over by $2 may mean a 20% relative increase, whereas to someone who has a low but livable budget that $2 would be more like a 2% relative increase, and that 20% offset eats into the next cycle's budget.

The precise numbers don't really matter all that much, but they can't be accurate without being at least precise enough that they form an accurate picture.

This all makes tracking as much art as science, because the real numbers don't mean all that much, and nothing can be put into simple values. Especially as we start improving, all the old relative values get distorted, and this is one way it's so easy to "over-do" it, even if "over-doing" it means the equivalent of eating an extra slice of bread every day, a trivial amount.

Because functioning is not a linear scale, it's exponential. Humans are terrible with exponentials, because we mostly work in relative terms. I've been improving somewhat over the last 2 years, and recently reached a stage where I can start doing things. I can now do more things in a day than I used to be able to in a month, so my calculations for the relative cost of something are wildly distorted. Cents don't matter much anymore.

This makes it very hard to estimate progress in recovery. A year ago I was thinking my progression was maybe in the range of 20-25% of my normal self, but seeing where I am now, still so very far from normal, yet capable of doing so much more, it's obvious that I was a lot closer to the 7-8% range. It's one of many reasons why scales like the CFQ aren't just useless, they're downright foolish.
 
Jonathan Edwards said:
That is interesting because it suggests that maybe the problem has nothing to do with use of energy in muscles but is to do with what is happening to the heart. Perhaps PEM is all to do with autonomic nervous system signalling in relation to heart activity.

If we knew that then we might be able to conclude that searching for something wrong in muscles was a false quest.
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Pretty much. Arms above head has long been widely reported as being especially problematic, and probably hints at at least part of the problem.

It's not necessarily the effort itself, how much muscle is being utilized, so much as, I guess, orthostatic response, or something to that effect. Of course at some point how much muscle strain is happening matters, but there are very trivial movements that can cause more trouble than others, despite the latter being seemingly more demanding on a muscle power basis alone.

I find that squeezing is a good example of a problematic movement. I have a picky washer here that easily gets off-balance, and a few times have had to squeeze some water out of clothes to better balance the weight, and find that a lot more demanding than some other activities I can do fine.
 
Jonathan Edwards said:
That is what individual members have stated - that there is a considerable unpredictability. Moreover, it seems that major 'crashes' are pretty had to predict.
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In my experience, the major crashes usually come because you’ve done too much for too long, and caused too many regular PEM episodes. You know that you’re pushing it, but you don’t know when it will blow up.

I can’t remember every hearing of a major crash that didn’t happen after multiple rounds of PEM, an extreme bout of exertion (both level and duration), or acute illness, surgery, etc. It would be really interesting if anyone had experienced something like that, especially after the first two or three years.
 
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Jonathan Edwards said:
Now that would be a very important clue if it meant that PEM was not so much a reflection of how much exertion had occurred during gate day as of some pre-existing 'bad state' that was indicated by heart rate rising with little effort.
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My watch only measures resting heart rate while lying still, but it reflects PEM very well.

Trouble is, any cause of unwellness will make it rise, including acute infection. It can be a significant change, going from the bottom end of the 50s (when I'm pacing well) up to the high 60s.

So I don't know whether that means anything. It may be a normal phenomenon.
 
Utsikt said:
In my experience, the major crashes usually come because you’ve done too much for too long, and caused too many regular PEM episodes. You know that you’re pushing it, but you don’t know when it will blow up.

I can’t remember every hearing of a major crash that didn’t happen after multiple rounds of PEM, an extreme bout of exertion (both level and duration), or acute illness, surgery, etc. It would be really interesting if anyone had experienced something like that, especially after the first two or three years.
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I am only 2 years in but this seems true for me too
 
I do tend to over ride brain symptoms because I get so affected easily. I can read a pleasant book longer than I can read the gymnastics of conversations on a forum. There is more thinking to do on a forum reading.

I have always had a reactive emotional personality, which is exacerbated even more by the ME. Two members of my close family have high emotional reactivity as well. So this is a separate thing riding along with my ME.
 
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bobbler said:
my heart can feel more like those times where eg I had a bad cold and realised I shouldn't be walking that fast or something - I'm hoping npeople know what I mean by it feeling under more 'strain' when I had bug but only noticing when it surprised me as I'd done something and had that heart thudding a bit more thing. I do get breathless too and think that might be OI related when I'm in PEM.
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Yes I get that all the time and only yesterday I had to walk slower when out. It feels like heart strain and especially now that I am older I think I might have a heart attack if I don't slow down.
 
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