Busy-work is one way of putting it but its more than that its being seen to pretned to measure something that is nonsense and a distraction so that they can keep invalidating people. It's terrifying they didn't realise that the 'additive' part was the key bit, along with the 'patterns'
WHat these people seem to have as a mental picture of what ME/CFS is, and therefore what PEM is (which needs to be in a picture that includes both the full spectrum with people moving up and down it and the cumulative 'didn't recover from x, before y piled on thne z 2million times) is nothing to do with the 'gist/penny drop' of what it
is.
I think we could do with some
really private threads (which can then maybe become members only ones, but whilst we are getting our heads around how to talk about this and figure out some of the 'higher level' findings so we have words to do so then there is that worry of having to think about giving away a lot that is personal about yourself etc) on discussing what we have found on HR-related devices and apps.
One fairly obvious thing is that I have days where - due to PEM or if we want to call it exhaustion - on certain days the same very low-demand 'activities' (toilet, sitting up, lying down being awake, tea etc) produce completely different measures compared to other days.
The idea that on the days where it is 'just' sitting up a bit more (I've had days where this happens lying down) putting that time period into the exertion zone, where the same angle might be the rest zone on another day is to do with something they've invented
because they want to deliver some x from their very poor, limited list of therapies instead of understand 'what is happenning' is terrifying. It's also why I'm cautious about the cart-before horsers (or more precisely 'already decided what we want, just fishing for what we can make fit what we want to see') anywhere near the app data until those who are actually good at analysing patterns have worked out how to put protocols on for interpretation.
It's stupid because if I had a heavy day for me 'activity-wise' and then at a later point the effects of that is that Im going over points doing 'nothing' on another day there are all sorts of hazards.
And none of it is to do with 'calming my system', I assume that is there because if my HR wasn't rising to cope with the incline on those days then worse things would happen - the issue is the incline that day is 'a lot'. Resting it off so I then eventually get good restful sleep does that, and the diagram shows that unless you are a predator looking to severely manipulate the interpretation.
I can imagine the deluded advice that would be going on in the minds of these crazy, scaring me new imagined 'whats going on' concepts of 'our being' that someone whose heart rate has to raise for them to sit on days they're more ill due to prior exertion either being told to do slow breathing and meditation first - to do the opposite of what is useful and potentially being stupid enough to think the compensatory mechanism of raised HR to allow us not to collapse when we sit is instead a 'fault' so to be made to do minfulness and slow breathing on it. Or, even stupider for them to think that 'practising sitting' is the issue and will make for a smoother HR - ignoring its variation being due to cumulative exertion prior, and that being obvious because its fine on days after rest but higher on bad days and thinking torturing us to do '40 a day' will make it 'more consistent'.
I find the whole stupidity of that so deeply offensive and terrifyingly dangerous as a new trope to live under and ruin any bits of 'peace' I might manufacture in my very limited life normal people would assume is 'so sad' but you find a way to make it something. It just feels so predatory and all about themselves (whilst telling themselves aren't they great so they don't realise it - I hate that 'BS-helper type' they are a very hamrful demographic who aren't helpers but people who have very defined things they 'will do' and call it help and impose it whether it harms or not and have been destructive to a level that can't be captured or described.
Hence why I'm determined that any conversation on this is not going to give these types any access because they are people determined to not 'hear' or 'learn' but to take out of context and cherry-pick and if they got near a persons HR stuff would cause havoc. Those things are currently just there as a bit of validating and interesting info to us, when we want to look at them and compare them to our experiences that we know aren't at least as deluded as their ideas.
But if your training and role shoves you into a cupboard/cul-de-sac where you can't do science on the medicine side, because you just get to deal with the 'therapising and misogynising/psychologising (which isn't psychology but anti-psych that harms to weaponise cod psych)' then your ability to see in the 'what do you see' when you look at something ends up limited to only being allowed to say you see it is it fits in your territory it seems so is producing some pretty weird stuff.
Their rule seems to be to avoid curiosity on how the body is really working and everything has to only be seen in the context of the housewives tales they think is 'sciene' instead of storytelling versions gleaned for very different populations and conditions that have been mis-extrapolated. How an entire industry that wants to make its business the fake fight or flight story (which is about adrenaline and was from a physiologist:
https://pmc.ncbi.nlm.nih.gov/articles/PMC1447286/ ) that has been slowly chinese whispered into different forms and a few other similarly mis-appropriated myths as if they are the principle of gravity, and think everything they see is in those terms rather than 'see what you see first' etc.
meassociation.org.uk
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