I’d say it’s relevant if they overstate the evidence or just give unscientific advice. That’s an issue in itself, regardless of the consequences for any individual.
And it also makes it completely rational to continue to distrust physios, which is the opposite of what Murph argued.
Indeed. And really the most important thing we need is the mindset and capability for staff to run a monitoring system that is curious and openminded to be taking down the different actual situations different peoples bodies might be in
I’ve lots of other comorbidities that are no doubt caused by the me/cfs pathology and not the ‘lazing round’ (I was bed bound a lot but still having to pull off more than most who weren’t at various points yet being given the label cfs makes these people disgustingly assume we are both unfit and do little and now that’s the cause of anything) but facts never got in their way and it’s unforgivable to stick a fake history on someone to fudge your suns which is what they do
So no I don’t trust them and I shouldn’t trust those who can’t step out if an abusive mindset just because it’s convenient to fudge truth to prop up their beliefs and the ideology of the subject and wish to turn on its heads what going on to treat the opposite of what is happening. It’s why I’m so ill and my life got written off to hell and no space for me to survive or exist. Which yes was them choosing that to my face knowing deep down somewhere their five mins of convenience mattered more than me getting five minutes of a right to life or existing. I do t won’t amoral people who don’t really give two hoots being given power over writing who I am anymore
I think unless we finally get some trustworthy people then some of us will still be in a dystopian hell. We will just get rewritten narratives on top of the distorted notes we can’t wipe from the last stuff. And a line up of people who want to do what they want to do predating on us again by making up our stories to lobby someone for money to ‘deal with us’
I have a horrible feeling I’m beyond saving and whilst I hold on for some cure there are many other things I have but am just being played by those systems because I’m on the don’t treat list and I’ll have gone from ‘too young to worry’ to ‘too old and missed out on family anyway’ to bother saving or helping excuse people do in their minds. I’m just someone who no one stood up for against the narcissism that really underlies all this and if you have an advocate who takes advantage of the sympathy for them if not correcting that I’m just a loser and ‘well done them for putting up with me’ instead of telling them to stop playing games and stick to the truth (so they had to offer less help because I actually would get support instead of managing out) who has been buried quite deliberately by day after day if these well practised quite vile but inbuilt now to many tactics. My life has been delay and lie about me.
I don’t know why the system got converted a few decades ago to a focus on making then keeping people like me far more ill than I ever needed to be by crushing me with these games but I can only conclude that those who went in (bps) and changed the whole of medicine to this had this objective for people like me. It wasn’t an accident. I can only guess there was money to be made or something else in making and trapping some in illness by the foot on neck bullying.
I know it’s not been about saving money or positive end goals. No system works as it does to this extent accidentally. It’s a new layer all the time to make life harder as you get closer to it. But about taking a service that used to get to the bottom of and making it into one that uses that as a carrot and power to destroy and play some and instead this ‘symptom focused’ or other buzzword Trojan horse term nonsense let destructive stuff be lobbied at said patients instead. And I watch it roll out more widely to other things and people and know they know (the ones at the top not the ones ‘just playing their part in the system’) it’s about making people sicker than decades ago by avoiding for no good reason other than to make them sicker providing access to basic diagnostics or even if tested that even being acknowledged to treat stuff on their record.
I’ve concluded from my position it’s bigger than just not helping sick people and leaving them but about these schemes creating an ongoing bunch of very ill people quite deliberately that never needed to be so ill. So I have to think why. And it must be to have us as some warning or underclass or just a source of income.
So no we can’t just assume these people become better people. Not with us. Those who played their part in punching down and didn’t come to a realisation at all the dating points we’ve had already have shown who they are when they are in those situations.
The thing I think will be transformative - and I know this because it’s just little tiny windows of where I got a tiny respite and was treated as normal person might for a no here or there why I’m still alive at all (and it’s like a parting of the Red Sea level of shocking when you realise it is in people gifts to just stop it with the years of games and ‘do’) - is that I have hope it might lead to a change of who is in charge of us and a protective layer in who advocates for us when those of the system do their knee jerk sneer of trying to ‘manage out’ us and lie. It’s that finally having someone saying ‘no’
It’s taking us out of that bucket of untrained abuse. I’d say my health was initially damaged by me/cfs but I hold the purveyors of all this architecture of ‘functional’ abusive stuff multiplied its impact by 25. And they took my opportunities. And they put me in this position of a pawn to be sucked dry for what I could be used for ‘in name’ and just look at the size of these kingdoms and edicts built in the name of keeping people like me bullied and from access to sane care of any type including support and including leaving me open to bullying in every aspect of day to day life.
I’m so ill I can’t hide from these people (no matter how ill it makes me or how much human right to support I’d turn down to do that it was safer) and am just a sitting duck. It’s what I’ve spent my whole adult life scrabbling to try and avoid . Unless these people change to instead the type of people I see for other illnesses I can see just how they will pull on the thread of those things still left for those who don’t just recover overnight - because we’ve tested how they react when their gravy train had to maybe change with the new nice guidelines. It will be a double-down on those people they see as ‘entitled to use’ who are still left as a smaller number under their capture.
