I'm not convinced a trial is necessary or feasible. It's not a treatment whose efficacy cna be measured in any way I can think of, it's an aid to daily personal management in the same way noticing when you are starting to need to lie down, or when you need to take a pain med, according to symptoms are management strategies.
Realistically most people's lives are such that HRM is only a minor adjunct that reminds us to listen to our bodies and helps us give ourselves permission to take a break, I think.
So would a 'treatment group' wear a heart rate monitor and be instructed to stop and rest every time their heart rate monitor buzzes to tell them they have gone over their limit? And a control group be told to take notice of their symptoms and stop and rest when they feel they need to, without the aid of a heart rate monitor? The only outcome measure I can think of for such a study would be frequency, duration and severity of PEM episodes for each group. I doubt there would be much if any difference.
The bigger issue for me is that probably the biggest differentiator in whether you are made worse unnecessarily (as of course there is bad luck from infections and we don't know what causes the condition) isn't the individual themselves but I think the leeway given by those surrounding them. Effectively whether people are 'allowed' whether they are using a tool or not to rest when they need to.
There is perhaps the difference that when someone is taking part in a trial what is really changing is those around them and not what they do or what their HRM says.
And pacing as a strategy doesn't change that, however, those who push it as some fix that is more specific than the idea of following one's own body tend to be those who have that leeway afforded to them. And it gets misinterpreted by the behaviourists as 'the moral of the story is that the
patient needs to behave appropriately according to a regime' where I feel the message is just that 'it's funny how much better I was at the times in my life where I had more freedom to be able to follow my body and do what I felt up to', even if that was sometimes doing things for fun that technically not pacing but heck I could then sleep it off for 2 days and meant I had some aspect of my own variation of youth.
It is very hard given the politics that seems to focus entirely on us - but I think is now going into things like pain medicine become propagandised and dodgy as - to not be brutally aware of how we apparently have to do some impossible trial to 'prove' the obvious which isn't provable, knowing that said 'proof' will just get twisted by those who believe the ill/disabled should be put on a regime of being monitored lest they somehow aren't behaving properly.
I know that physiosforme are definitely not doing it for that reason. So I'm certainly not saying they are either doing the wrong thing or aren't probably horribly aware of where we all sit in this because of how well they have interacted over the years, so I'm not mentioning this in a way to suggest they are naive, because I think we are all in it together realising that bigotry and bigoted culture hamstrings us whatever.
And I did think that the heartrate in the home done with those more severe was very intersting indeed because of the care taken over the methodology to measure people
before they got up (which is the tricky part of our illness because most trials have this catch 22 of the very act of people getting to a lab makes the thing being done there a drop in the ocean on top).
And we hoped that some with common sense would just see that it proved what should be believed but isn't regarding what some live with.
So I actually find it all very interesting that this is done. And unavoidable given the amount of different types who are wanting to find ways of making money out of our existence which currently seems to be by suggesting to others that 'us as a problem' can be 'best tackled by giving them money for their app' etc.
