Using Heart rate monitoring to help with pacing.

Utsikt said:
If you block the signals to/from the brain, how can you know that the brain isn’t keeping track in some way just because you don’t get the same results?
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Because the whole system falls apart when the signals are blocked. If the brain was still making predictions in the absence of signals, it would try and compensate in some way, but it doesn't.

Jonathan Edwards said:
Yes there is. I go for a walk most days and when I get back I usually guesstimate how many steps I have done. I am usually reasonably accurate. However it does it, the brain keeps score. Events keep score of how far they have walked in any given direction.
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You know that is not what I mean. The brain is simply not counting how much kj is utlised or how much work is done by the muscles. There is no tallying on that level. The brain does not predict metabolic state based on muscle activity, it simply responds to the metabolic signals on an ongoing basis.
 
Snow Leopard said:
You know that is not what I mean. The brain is simply not counting how much kj is utlised or how much work is done by the muscles. There is no tallying on that level. The brain does not predict metabolic state based on muscle activity, it simply responds to the metabolic signals on an ongoing basis.
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But that isn't what I mean either @Snow Leopard. There is lots of tallying in terms of steps performed - as I say, even ants can tot up steps and multiple directions and walk back in the right direction. And I don't see that we are talking about predicting a metabolic state either. The brain judges whether or not the body has done more than is a good idea in terms of maybe repair processes. If there is prediction I suspect it has more to do with predicting pain than a metabolic state.

Maybe fatigue has to do with a cumulative shift in metabolic state during sport but even with Alcaraz and Sinner I suspect that their ultimate fatigue may have had more to do with signals of impending carpal tunnel compression and retromalleolar tenosynovitis. In the daily events that people with ME/CFS have trouble with I remain sceptical that metabolic signals have anything much to do with the 'fatigue' - and people even dispute that we are talking about fatigue. I asked for some data but haven't seen it yet!

In my own experience both fatigue and appetite are influenced by a whole range of contextual factors that cannot be signalling metabolically. Appetite is different in important respects but it illustrates how many overriding factors there can be - flavour, bulk, expected time to next meal, social factors. I don't see why monitoring of physical activity should not be just as complex. Metabolism is likely to be a major factor in sport but lots of other things affect my fatigue. If I travel much more than 100 miles my brain clock nearly always adds an hour to the time, irrespective of time zones. Not more than an hour though. I can ski a 22Km run from 3,500M above sea level at maximum safe speed and keep up with people forty years younger twice a year but just walking to the shops drains me at home. I don't see that as just responding to lactic acid or whatever.

And I don't think we can predict what will happen if the regulation of signals goes haywire - even if they originate from metabolic shifts. In disease the normal regulatory responses expected need not apply any more.
 
Jonathan Edwards said:
If there is prediction I suspect it has more to do with predicting pain than a metabolic state.
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I think that is wrong too (if you are talking about muscular pain itself), I get a similar amount of pain after 500 steps as 10,000 steps when walking. (due to ankle weakness, in turn due to motor unit loss, this is not necessarily a ME/CFS thing) the brain doesn't seem to notice or care how much steps.

We know what happens when we block the signals - the ventilatory responses are impaired and instead of central fatigue we get peripheral fatigue. You can do the effort to learn the science if you are skeptical.
 
I don't have all the knowledge the rest of you seem to be referencing. But, I think in some way our bodies must keep track. When we were normal our bodies became tired in relstion to a certain amount of activity. I don't think that has actually changed. I think our bodies still react to a certain amount of activity but the me/cfs has introduced different and shifting parameters and we don't fully understand what they are and why they are doing it.
 
I feel like it is possible that PEM that is actually fully seemingly out of nowhere (and for sure not triggered by emotional exertion or something similar), could be caused by something else like an unknown infection etc.
I do think it is a rare occurance for someone to have PEM that isn't triggered by exertion in some way. I personally never experienced it, although I am quite often in rolling PEM and most likely wouldn't even clearly notice it if something didn't have an explainable trigger. This is also I think what really makes a difference between me/cfs and other chronic illnesses. I often hear people with some other chronic illness be confused about "flare ups" that they cannot explain, while that has never really happened to me.
 
Responding to a deleted post about gradually learning to tune in to the body's signals.

I can relate to this but I think I am less tuned in. I can interpret my reactions to physical activities like walking, cleaning, and so on. But, I don't feel how mental or emotional stuff will affect PEM but I know that ot usually does.... but sometimes I get super upset and it doesn't and I don't know why not.
 
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Responding to a deleted post.

"plenty of us will push ourselves past our limits for the sake of human experience. Social connection and enrichment are needs too." Thanks for recognising the importance of this while also managing energy expenditure.(edit) Thanks too for the good wishes.
 
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I just came across Oonagh Cousins' post today in the #ThereforME campaign. It's brilliant and so relevant to what we're discussing. She describes how aggressive resting firstly improved her health so she could resume rowing training but then she had to pull back because it was too much which meant giving up the Olympics dream.

"Come the next Olympics, we will celebrate the medalists for their extraordinary performances. But let’s also create space to honour something much less visible, yet no less demanding, disciplined, or full of sacrifice: the work of rest for those with chronic illness."

'The work of rest' is so, so hard.

"This cultural dismissal of rest is especially harmful to people with ME or Long Covid, who must often rest for prolonged or indefinite periods. They face not only the impact of their condition, but also repeatedly justifying their need to adapt. Amid all this, the emotional cost of rest is almost entirely overlooked. To rest in the context of chronic illness demands the endurance of immense grief."
 
Binkie4 said:
"This cultural dismissal of rest is especially harmful to people with ME or Long Covid, who must often rest for prolonged or indefinite periods. They face not only the impact of their condition, but also repeatedly justifying their need to adapt. Amid all this, the emotional cost of rest is almost entirely overlooked. To rest in the context of chronic illness demands the endurance of immense grief."
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so so true. Do you have a link pls Binkie? No worries if not but I'd like to share that widely
 
Further back on the thread we were talking about heart strain and having to slow down when walking. I keep forgetting to liken it to the Covid slow walk and breathiness. It felt similar to how my ME is at times in that regard. Might not mean anything, just thought I would mention.
 
Jonathan Edwards said:
Where is the evidence base for that? We don't have any theoretical base for it so far.
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This is such an interesting set of questions! If anyone is doing a study on this I'd be so happy to participate if eligible for inclusion criteria. Anyone know of anyone doing a good study on them use?

If someone had pointed me to this resource sooner I would have made very different life choices in the last decade, and maybe that might have prevented some of my decline. Maybe not, but I wonder.

JemPD said:
To use the hypothalmus as accountant metaphor, it seems to me that when i'm very stressed something makes it temporarily stop telling me it's measuring, makes it 'run silent', so that I feel like I can do much more, and all symptoms are reduced to allow me to do more (in the moment).... but it's still counting. So that once I calm down it then 'tells' me how much I done (which is always FAAARRRR TOOO MUCH because i had no warning signals, no gut sense that i was going too far) & I start the PEM/crash process. Which is bizarrely then delayed by yet more 'wired but tired' & doesnt fully hit me until after I've slept.
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This is such a brilliant metaphor I may have to use it when explaining to family and friends why I often seem "fine/well" when they see me but crash afterward.

Trish said:
I didn't really believe it could have such an effect until I checked what it was doing to my heart rate.
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So relatable! I'm often surprised what affects my HR.

Not sure if this is helpful but I wear my HRM on my dominant hand and I have the setting for "no dominant", so it counts my arm movements as steps. This has been helpful for me to avoid overdoing activity with my arms.

Kiristar said:
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.
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This is part of my calculus too. I think I have found that high resting HR generally correlates with low HRV, which indicates I should take it easier. High resting HR/low HRV days often follow days with higher HR or step count. But I don't know if that's just my biased interpretation.

Binkie4 said:
work of rest' is so, so hard
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YES!!!!

This conversation is insightful if dizzying. Most of the medical theorizing is way over my head, but I'm really intrigued by everyone's perspectives and experiences. And I'm learning about how others use HRM, which is really helpful for me. Thanks to everyone who has contributed to this conversation!
 
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ElephantNerd said:
This is such an interesting set of questions! If anyone is doing a study on this I'd be so happy to participate if eligible for inclusion criteria. Anyone know of anyone doing a good study on them use?


Yes!


Agree so much! If someone had pointed me to this resource sooner I would have made very different life choices in the last decade, and maybe that might have prevented some of my decline. Maybe not, but I wonder.


This is such a brilliant metaphor I may have to use it when explaining to family and friends why I often seem "fine/well" when they see me but crash afterward.


So relatable! I'm often surprised what affects my HR.

Not sure if this is helpful but I wear my HRM on my dominant hand and I have the setting for "no dominant", so it counts my arm movements as steps. This has been helpful for me to avoid overdoing activity with my arms.


This is part of my calculus too. I think I have found that high resting HR generally correlates with low HRV, which indicates I should take it easier. High resting HR/low HRV days often follow days with higher HR or step count. But I don't know if that's just my biased interpretation.


Ugh yes this is so relatable.


YES!!!!


This conversation is insightful if dizzying. Most of the medical theorizing is way over my head, but I'm really intrigued by everyone's perspectives and experiences. And I'm learning about how others use HRM, which is really helpful for me. Thanks to everyone who has contributed to this conversation!
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Yes, when I tracked it, an elevated RHR correlated to PEM (in my case an excessively low or high HRV) for me too. I just find hrv easier because my smartwatch does it all automatically. (eta Also somehow I trust an overnight calculated metric more than a spot morning figure I guess, which dates back to when I was trying to use a chest strap)
 
That has to be the worst survey I’ve ever attempted completing. Are they trying to get as few responses as possible?
 
Ok so those of you who use HR monitoring to help with pacing... how do you calculate what figure to set yr alerts at?

I looked at the workwell recommendations here of 15bpm above average RHR.... but its hopeless. my ave rhr is 70 putting the alert at 85. It goes up to 90 just rolling over in bed, & up to 110 when i simply walk from bed to toliet.

I simply dont have a life where I can restrict activity to less than that or even only that. I have a lot of hosptial appts for other things, a house that is constantly in need of attention (i mean with essential repairs not cleaning/cosmetic stuff - lol it hasnt been decorated for 20yrs & is in a frightful state) and I'm alone with only part time care. No one else to sort anything out or I'd let them!

It just seems unworkable for me. I guess the

I saw one calculation yrs ago that was something to do with age.

But i remember when i tried hr monitoring yrs ago that i gave it up for the same reason, because it was impossible to keep hr under the threshold & since i get PEM from cognitive & sensory activity too, it just seems impossible to do the whole 'well it's individual so see what gives you PEM & set it under that' because my life simply isnt the same amount of activity every day, it just cannot be unless i was living with husband, parents or could get out of this sodding house.

And to a large extent i'm forced to do activities when there is help available to do them rather than when my symptoms are at optimum levels.

So which calsulation/guideline do you guys use?
 
JemPD said:
I looked at the workwell recommendations here of 15bpm above average RHR.... but its hopeless. my ave rhr is 70 putting the alert at 85. It goes up to 90 just rolling over in bed, & up to 110 when i simply walk from bed to toliet.
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Yeah, that does not work for me either. lol at just rolling over in bed. Some people have no idea what we go through.

JemPD said:
So which calsulation/guideline do you guys use?
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I use a number that seems workable for my situation and not have the alarm go off all the time. The alarm I have has a delay - I have to be over the threshold for X mins.
 
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