To give more context to "unless the person feels ready to progress":
So I think it may be more about helping keep the brakes on for people who feel they are recovering. Obviously some people do recover and some even get back to high-level athletic pursuits. Is there a way to optimise and protect recovery in those that are recovering? I don't think we can answer that until we know more about mechanisms.
Perhaps in the future we'll be able to track things like urinary metabolomics to identify PEM threshold and exercise within limits where we could conceivably get benefits of exercise without the downsides. Again: for people who seem to be on a recovery trajectory.
Here is the thing. I was one of those who probably still deep down doesn't want to think that it is just about never exercising again. And who as someone who was pretty athletic before never just cut it out, and would certainly be happy to add bits in. There were big differences between when my life was controlled by others/events/commitments/survival and I got much more ill much faster - even if it was just work meaning you couldn't rest as your body needed - and when it wasn't.
You
do eventually get ill enough, and boy did they do a good job of ensuring we are the least 'helped' to the point where propaganda has metaphorically encouraged laypersons to metaphorically be putting their foot out to trip us up 'in the name of helping us, cos you know we need that', that the deliberate non-access to any adjustments then does this for you. You can't access life without it being over your threshold. ANd of course the bad guidelines and bad propaganda I know incited employers etc to do things that accelerate that progression to that point - by the attitude of 'they don't need to step back, they need to be toyed with and have their physical buttons pushed' that the cfs-CBT encouraged.
I was reminded of this by
@Maat 's very good post. People get double-whammied (but it is actually more than that because new norms got spread)
So it is slightly tricky to put this sort of stuff into context, when it is from the same people who aren't first lobbying to stop others from gerrymandering to ensure the people who need the most control over their exertion and life are instead interfered with to make that impossible. Because that means it is a very rare indeed situation where someone could even be having some nice calm life where they can 'just' add in 'a bit of whatever'.
And a few things I do know from over the years trying 'this' in different ways:
1. you need a LOT more rest AS YOU NEED IT if you are adding in physical stuff. SO they need to start dropping this still ongoing nonsense of sleep hygiene that was always made up based on old wives tale level knowledge. And I believe their concept of 'pacing' is the same patronising but foolish ignorant people assuming they can just talk to intelligent adults like they are 'their kids who just need patronising' and not people who they need to hear about
the actual illness instead of treating them - yes, like it's behavioural (but these people don't understand their mindset even
is behavioural because they don't 'get' that term and 'think' their 'ideas' are 'science', just like they don't 'get' that when people say 'psychosomatic' they are talking about them, because they don't realise what they think
is psychosomatic).
EDIT to explain: In ME exercise will affect sleep needs in completely different ways to
their kids when they get over-tired or 'other people who need a routine'. There will be compromises and 'exercise' won't make their 'behaviour and life'
more normal (which seems to be the fallacy car-before horse issue we deal with here where they think act normal--> feel better, rather than other way around).
2. you will
think, and certainly I think most physios and GPs will be fooled into thinking it is 'all great' - particularly because those who do this will be the very people who
love exercise and so will be sooo happy that whatever fudges they are shifting to add it in 'they are back on their way'. BUT it will hit at 6-12months. That's why ME is so dangerous. And I'm not sure that 'managing PEM' is all that possible to avoid that stuff. EDIT: you can
think you've 'managed it' but still get the deterioration.
3. the combination of these 2 things creates a very dangerous situation. Because I've learned that professionals don't like to look wrong - above anything. EDIT: and the culture can make just saying 'it didn't work' an issue that affects their job for the worse rather than better.
And they will have been inadvertently misled by the patient. They will almost be unable to see/process/hear when someone goes downhill, so have to use terms like 'flare' as if it was something they did or caught at 6months, rather than it being a slow accumulation. I just cannot see them being able to be 'good objective observers'. And part of it isn't their fault, because you need to
know and
listen and be open-minded and experienced to be able to see this and look past what might look lovely at 3months as if they built muscle to realise that
was the same process that meant they
lost function at 12months.
EDIT: You start seeing the same misattribution errors and grabbing for 'it's something they did' excuses like: 'it's because they aren't sleeping at the right times' instead of realising the sleep going awry is/was a
symptom but also a vital healing mechanism
4. SO the fact I'm still seeing 'professionals
helping' instead of 'professionals objectively listening and studying to build knowledge and work with' is just a worrying repetition of the same fundamental error.
It's why it felt like such a step forward when Workwell research came out. Ironically I - stupid as I am - had tried going to a gym around that point, and a personal trainer had been one of the first ones telling me about how he worked with a few with the same condition and you had to be really careful etc. SO it seems in exercise science there are different techniques that at least some use that means they are
always learning.
