Using Heart rate monitoring to help with pacing.

[Eddie]

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.

One of my first symptoms was strong palpitations after trying to exercise. My fitness at the time was very good so something definitely changed in a short amount of time.

Do you think the autonomic nervous system "sensitized" into sending PEM signals when the heart is being used. Or is the autonomic nervous system sending incorrect signals to the heart which then causes further issues that produce PEM? Also if the autonomic system is having signaling problems, is it possible that what is happening to the heart is caused by signaling in relation to vascular contraction/dilation?

I think Systroms work is pretty convincing in showing an abnormality. What role that plays in producing PEM and what the cause of the abnormality is, I think it very much in question.

 

[Jonathan Edwards]

Well there is the David Systrom research about preload failure which I haven't tried to follow in depth.

Indeed, but there does not seem to be any way that would explain why doing a certain amount during the day would cause PEM later.

 

[Jonathan Edwards]

I'm pretty sure that a high resting heart rate first thing in the morning is a bad sign.

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.

 

[Jonathan Edwards]

Would the body think it was a good idea to slow down lymph recycling if it (mistakenly) thought there was an infection in lymph nodes?

I would expect the opposite - to keep the dendritic ells circulating.

I doubt fluid flow has much to do with the activity in nodes and them being swollen or tender though.

 

[Jonathan Edwards]

During an infection, lymph vessel peristalsis, the rhythmic contractions that propel lymph fluid, is often modified and may even be inhibited.

I think that is something different - fluid efflux from a peripheral site of infection/inflammation may be reduced perhaps - although the main change is a vast increase in fluid inflow to the site. Since there isn't any evidence of peripheral inflammation in ME/CFS I doubt this is relevant. Cell activity in lymph node is something rather different and the nodes are much more centrally placed.

I also worry that AI picks up all the enthusiastic garbage written about these topics in self-promoting review articles.

 

[Jonathan Edwards]

Or is the autonomic nervous system sending...

I agree I think those are relevant questions, to which I have no answers.

 

[Hutan]

I also worry that AI picks up all the enthusiastic garbage written about these topics in self-promoting review articles.

Without a doubt.

But, I think the fluid in the blood goes somewhere for a while, into the tissue, when PEM happens. That increase in shock index doesn't happen for no reason. There's Systrom's preload failure. It would be good to understand where the fluid goes, and how and why it gets there. I haven't given the lymph system much thought before now.

 

[PrairieLights]

Do most people with me/cfs have heart rate issues affecting PEM from onset?

I can only think of myself. I had my me/cfs symptoms and PEM about a year before getting ill with a sinus infection (later diagnosed as dysautonomia) and having autonomic symptoms since.

Since, movement causes tachycardia, even rolling over in bed. So, I take medication that helps lessen it. I use my watch to check my heart rate and alter what I am doing as not doing so ends up causing more fatigue and PEM later.

 

[Trish]

Does it have to be some part of the brain keeping score of exertion? Could exertion lead to a build up of something or a shortage of something or temporary damage somewhere in the cells or blood that is not rebalanced efficiently, leading to tipping over of some biochemical process that triggers much worse symptoms?

 

[Jonathan Edwards]

Does it have to be some part of the brain keeping score of exertion? Could exertion lead to a build up of something or a shortage of something or temporary damage somewhere in the cells or blood that is not rebalanced efficiently, leading to tipping over of some biochemical process that triggers much worse symptoms?

Anything is possible but something seems to be doing the accounting over a period of hours. Metabolic shifts tend to last for minutes. The immune system in lymph nodes and spleen might be totting up the amount of junk being thrown out with usage. But the brain and autonomic nervous systems seem to have a normal function of totting up the day's activities and calling a halt in the evening.

And although some people find that PEM symptoms are deferrable to the bit of body used most seem to find they are all over. It is hard to see what metabolic shift is going to occur in the circulation without it being picked up as a change in lactate, glucose or whatever.

 

[PrairieLights]

I have zero evidence and far far less knowledge than many people on this forum. I don't think I even have the brain energy to read most articles on the forum...

...but, my mind wants to always tell me cfs is somehow how having too much or too little of some bodily thing that doctors don't test ir have the ability to measure. I don't know why I think that other than it just makes sense to me.

 

[Binkie4]

Trish said
For example the arm effort of sorting send folding washing is something I have learned to avoid and get my cleaner to do as it wipes me out quickly. I didn't really believe it could have such an effect until I checked what it was doing to my heart rate.

The discussion has moved on since @Trish posted this but I'll post this for those who might be interested in the hrm aspect. I am not good in the morning so cannot come on here early but would like to reinforce that specific example.

I too learnt from hrm that I should not fold anything that required exaggerated arm movements eg bedding, towels are a complete a complete no, and I avoid all folding. I haven't changed a bed for years and have a cleaner who does it, nor do I make the bed because the action of pulling back and shaking the duvet would send my heart rate soaring.

After one specific episode of a heart rate climbing very high ( 141 at age 70 when I normally kept my hr below 90 ), precipitated by a cardiologist doing an informal stress test without warning, I lost a lot of capacity. Following it I had to move to a wheelchair when outside the home: only correlation I know. When I had to do a formal stress echo some months later, I asked Dr Bansal for advice on maximum hr and the Brompton were very cooperative and it was set at 115. I had no ill effects.

Not raising my hr almost seems automatic now after several years of monitoring it closely. It's much easier to do now I need to avoid being upright.

edit: I should add I was given saline during test.

 

[PrairieLights]

I find arm movements an odd thing too. I can stand and cook a stir fry or whatnot that involves arm movements like chopping stuff, stirring, reaching... and my heart rate becomes the same as though I had walked up stairs. I find that baffling as cooking is physically easier technically.

 

[Jesse]

I'm pretty sure that a high resting heart rate first thing in the morning is a bad sign. It seemed to be correlated with PEM late that day or the next day.

I do want to note that athletes sometimes track morning resting HR and it being higher than normal is used as in indication of overreaching and to avoid overtraining. My point being, elevated morning resting HR is also seen in healthy people when pushing their limits.

Now how much the above is backed by good science I don't know.

 

[jnmaciuch]

Does it have to be some part of the brain keeping score of exertion? Could exertion lead to a build up of something or a shortage of something or temporary damage somewhere in the cells or blood that is not rebalanced efficiently, leading to tipping over of some biochemical process that triggers much worse symptoms?

I do think that PEM itself must have an immunological basis, but all these experiences cumulatively really lead me to look for a metabolic trigger for that immune response rather than a fancy brain calculus.

 

[PrairieLights]

Responding to a deleted post about symptoms telling you to stop.

That's a good description. I get a feeling too in my body telling me to stop. I can't come up with an accurate description but I feel like from my shoulders downward I feel like there is pressure pushing me downward.

And for cognitive stuff my irritability goes up so much I want to shout for people to shut up, of course I don't but it's such a strong sensation somehow.

 

[jnmaciuch]

It is hard to see what metabolic shift is going to occur in the circulation without it being picked up as a change in lactate, glucose or whatever.

Pretty sure things have been picked up. Off the top of my head:

https://pmc.ncbi.nlm.nih.gov/articles/PMC8709070/

and the Hanson maximal exercise metabolomics:

https://insight.jci.org/articles/view/157621

Not to mention glucose uptake differences in cultured muscle cells from Newton’s group, which would align with all those metabolomics findings.

The exact metabolites aren’t conserved, metabolite screens are notoriously fickle and I don’t think all those studies are methodologically perfect. So you can make an argument that we don’t know reliably what the exact shift is. I’m not going to make any definitive claims based on those studies.

But seeing overlap in pathways with glucose and TCA cycle metabolism, as well as glutamate and fatty acid metabolism, more times than you would expect by chance (and despite the massive variability in metabolomics and the fact that blood or saliva may simply not be the best place to look) tells me that we cannot ignore the metabolic picture saying “nothing has been observed.”

[Edit: by that logic we’d also have to dismiss the possibility of immune participation based on the fact that there’s been no consistent cytokine signature found in blood. I don’t think we can discount immune response, nor metabolism]

 

[Kiristar]

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.

 

[EndME]

Perhaps PEM is all to do with autonomic nervous system signalling in relation to heart activity.

How would heart activity play a role if beta blockers seem to have no worthwhile effect?

 

[MrMagoo]

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.

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.