Using Heart rate monitoring to help with pacing.

[PrairieLights]

My watch has this monitoring one that is for stress. At first I thought it was some ridiculously useless setting as it endlessly congratulates me on restful periods. But I have learned to ignore that bit and realized it shows me what causes me exertion to an extent. I think this is based on if your heart rate matches your activity level.

Anyhow, helps me pinpoint, looking back, what activities had more likely positive and negative effects (and when medication starts wearing off).

 

[poetinsf]

That is what individual members have stated - that there is a considerable unpredictability. Moreover, it seems that major 'crashes' are pretty had to predict.

The unpredictability comes mostly from inability to measure/estimate the exertion across different activities. If you take just one exercise, walking for example, you can more reliably trigger, or avoid, PEM by walking certain distance/speed. That is the reason why patients employ fixed routine as a way to avoid PEM.

 

[Jonathan Edwards]

The unpredictability comes mostly from inability to measure/estimate the exertion across different activities.

Not from what I have heard. People talk of crashes coming out of the blue. And even when there seems to be a trigger it is always hard to know that it has not been attributed simply because we do that automatically. Everyone wants to have something to blame. If it is hard to measure exertion then we aren't in a position to know anyway.

 

[Utsikt]

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.

Again, it seems that something is doing very precise accounting but inappropriately, which is interesting. Presumably the gut feeling of how much you have done doesn't;'t use the same memory stores in this case.

Adding to the anecdotes here: stomach issued had me make 5 trips to the bathroom (20m total) in about one hour. No additional pain or unexpected symptoms yet.

The time spent upright was also longer than what it usually is for that amount of distance covered.

I’m contemplating doing a 25m continuous walk next week, but it’s probably a bad idea.

 

[Amw66]

That is what individual members have stated - that there is a considerable unpredictability. Moreover, it seems that major 'crashes' are pretty had to predict.

I think rolling PEM is an issue , particularly for new / mildly affected .

PEM can be caused also by a build up , not provoked by a single incident . This makes it particularly difficult to unravel . It makes it so insidious

HRM and apps may have a role here, as you have data over time which can be interrogated and linked to activity / life events


Emotional PEM is the hardest to guage for us.

 

[poetinsf]

Not from what I have heard. People talk of crashes coming out of the blue.

Some may. But most would agree that there is a strong relationship between exertion and crash most of the time. (There are triggers other than exertion that could trigger PEM seemingly out of the blue, but that does not mean exertion above certain level is a cause). The question here is whether the exertion threshold for the trigger exist. There is a way to test it if that is in doubt: remove other possible triggers best you can, let the patient rest for 3 days, and then have the patient walk certain distance at certain speed. If you can trigger PEM at or above certain distance/speed most of time, then we could conclude that exertional threshold exists. (Again, an observational study with actimeters could substitute). I think it is important that we establish that if you have any doubt about it. It's going to go a long way to accept/reject candidate hypotheses.

If it is hard to measure exertion then we aren't in a position to know anyway.

Actually, (total) exertion itself is rather easy to measure. You can define it as the rate of energy expenditure, or power/MET. It is the damage pertinent to PEM that is hard to measure. Smaller exertion of muscles that haven't been used for a while may trigger PEM while larger exertion of the walking muscles may not, for example. You need take into account the condition the patient is in at the time of exertion if you want to be precise. But establishing a general correlation between exertion and PEM probably is enough. That it is hard does not mean that it is irrelevant. though. That is why I'm working on it!

 

[poetinsf]

Not from what I have heard. People talk of crashes coming out of the blue.

One thing I forgot to mention: patients in mild/recovered stage are less likely talk of crashes coming out of the blue. Other triggers and accumulation effect are minimal in that stage and therefore the effect of exertion is much more pronounced. This is why I keep saying that the research should consider the entire spectrum rather than focusing on severe/moderate side only.

 

[PrairieLights]

One thing I forgot to mention: patients in mild/recovered stage are less likely talk of crashes coming out of the blue. Other triggers and accumulation effect are minimal in that stage and therefore the effect of exertion is much more pronounced. This is why I keep saying that the research should consider the entire spectrum rather than focusing on severe/moderate side only.

This is true of my experience. When I was mild and still working it was very clear what my triggers were even with delayed responses.

Currently moderate and it feels like a mix. I have triggers like before but also others I can't always figure out.

 

[Jonathan Edwards]

If you can trigger PEM at or above certain distance/speed most of time, then we could conclude that exertional threshold exists. (Again, an observational study with actimeters could substitute). I think it is important that we establish that if you have any doubt about it. It's going to go a long way to accept/reject candidate hypotheses.

I realise that I have been recommending this was done for over 5 years now (recalling a particular event that has a date). As you say, it makes all the difference to viability of hypotheses.

Actually, (total) exertion itself is rather easy to measure. You can define it as the rate of energy expenditure, or power/MET.

I am not sure that is even agreed. Exertion might be force, power or total energy consumption. Members talk as if they think it is the total energy consumption that matters, not the force or power output per se. And yes, changes in muscle that might trigger a delayed reaction may depend on previous use and also the type of use. It is well established that contracting a muscle while it is lengthening (as you do going down stairs) does more damage than contacting one while it is shortening, at least during training.

 

[jnmaciuch]

One thing I forgot to mention: patients in mild/recovered stage are less likely talk of crashes coming out of the blue. Other triggers and accumulation effect are minimal in that stage and therefore the effect of exertion is much more pronounced. This is why I keep saying that the research should consider the entire spectrum rather than focusing on severe/moderate side only.

Same for my experience. From my perspective, having gone from homebound to mild, it is much easier to conceive of it being much harder to gauge the effect of cumulative exertion and other modulating factors when more severe, rather than positing that milder pwME are inaccurately assigning a cause to their PEM.

I actually hadn’t heard of ME/CFS or PEM for several months when I became ill, and yet from symptom tracking I could discern a pattern quite easily over time. I was actually quite primed to believe it was stress-induced from all my doctors at that time. I highly doubt that my ability to clearly see a pattern here is some kind of confirmation bias from needing to find a pattern in the madness.

 

[jnmaciuch]

And while I’ll concede that anyone is prone to confirmation bias, it really does tend to be a clear and obvious relationship at the milder end of the spectrum. Early on in my illness I even asked some disabled friends to analyze my symptom journal for me just to see if they came to the same conclusions with different starting assumptions.

I hope others understand why I might not take kindly to the suggestion that I don’t know what’s really causing my PEM when I’ve already spent years unnecessarily doubting my ability to make those (proven to be robust, over time) conclusions due to constant gaslighting.

[Edit: perhaps the feasibility and reliability of gauging one’s own exertion is something that only becomes obvious when living with the illness]