The issue is that many patients are not well informed and while pacing up isn't as destructive as full GET it can still cause harm and deterioration. I have seen people harmed by these kinds of programs in LC groups.
Of course the progress is welcome and cannot come soon enough but as you yourself have said it is not certain when the research progress will make clinicians take ME seriously. It may not be until we have effective treatments. So in that scenario we are looking at years more where people put their trust in clinicians and are pointed towards this app and deteriorate as a result.
I'm not sure it isn't
more destructive than full GET, because it uses an insidious long-term cumulation and not dropping down so that by the time people crash out it could be worse, and their mind is perhaps even less likely or able to realise and attribute it. ie at least with GET people would have seen that programme and suggested increases as
external to them whereas with 'pacing up'
it is tricking people into believing
1. their baseline is different to what it is, and is something to be pushed and so they find it harder to get their own process for finding 'true north' (so not just 'what level is my body comfortable at' but 'what is that feeling that means something good vs something bad' - really disruptive stuff to mental orientation with ones own body).
Basically doing it in smaller increments but for longer is for more what leads to
more permanent deteriorations that are significant. Think - it wasn't the one social event you wish you never got pushed into attending as an obligation or that one really busy week at work where you crashed out and were off ill for 3 weeks. It's that 6months of doing 40% more hours than your body could handle and the stress of making a success of that job with 60% of the resource vs your colleagues.
And not crashing to take time out and recover and linking it back, but getting gaslighted to just try doing the same again the next week 'but maybe say some mantras to yourself at lunchtime' or 'try switching tasks more, whilst doing the same work'.
So that you are distracted rearranging deckchairs on the titanic, as is your boss and OH (having been misled) instead of
even noticing how you feel and/or tackling the issue and just reducing your workload or days or allowing work from home. And that endless list of useless suggestions some person might have to exhaust (there will always be even sillier ones, now no idea has to be evidenced or based in science
at all - maybe
you are just not breathing right, thinking right - endless courses of boxes to tick there, sitting right, ordering your work right, doing your rest breaks right) can be dragged out forever?
This is about normalising being ill and struggling and that being your lot, noone is going to listen anymore because that is the 'pot' you are in. I'm not sure it is even about anyone 'getting better' - well it can't be if it isn't legally deliberately breaching the very central tenet of the nice guideline and analysis 'not based on false beliefs/deconditioning'?
2. each time they fail
they must have just done it wrong, or had bad luck, or just increased by the wrong amount. As if there is such a thing.
GET failed because the illness isn't improved by doing this, so they are making the patients responsible for making it [the already proven by GET 'impossible because it is counter-intuitive/nonsensical'] work now. Doing the impossible and fixing yourself to do more with more activity is now non-negotiable, not a research question.
Where at least GET was more honest - and I guess why that was what was trialled and not this (which is ethically worse because it isn't testable increments, they are only doing it because the testable increments harmed/failed, not because this is more ethical), because if you collapsed from GET and ended up more disabled noone was screwing with reality, someone's mind and... the legal standing of that injury ie not taking responsibility?
In a sense at least the GET thing came probably had a sense about it of people thinking some 'chronic fatigue' people snuck under the diagnosis and so were using a collateral damage approach of forcing all to do the rehab that would finish off those with ME/CFS but will some dream that 'those who didn't have it' might be improved. Which of course would be hugely immoral to make a treatment for ill people be something harmful in order to fish out those who don't have it.
Except the CBT part was
really utterly immoral, and sort of focused too on being a sales pitch to those without the illness 'it is just a false belief' to enforce the real dystopia onto people and trap them.
Where this is gaslighting and so sure that
anyone's baseline can be increased whatever they have, and if it doesn't they are just not trying the right thing'.
They've rolled the insidious old cfs-CBT ideology right into and under the 'pacing up' and its all about now gaslighting people if they don't increase long term
they've failed - but without defining, in order that it can be ever tested, what 'therapy/mindset/actions' get
anyone to that place.... because none do. It is now some end goal that is evidence merely by the belief of Pete Gladwell, BACME and those who've sucked up the bigotry put out to believe ME/CFS has an element of 'you can better yourself despite us not offering any medical treatment'....
thank goodness you gave us an app to teach us to ...just do more?