Moved posts
That’s my point - it’s ’this Area of physio’
the one that’s decided to focus on behavioural and fatigue
is there a role for that - and I think that’s an important question Because I assumed not when guidelines changed
and their behaviour since has underlined it
might be a different physio area like physios firME taking it on too
Does it need to be renamed and distinguished from this old paradigm/how can we clarify that ?
what do we call the difference between the two?
JUst to come back to this one, because there is a somewhat specific and succinct point of a very important thing to add to the list of what needs to be transformed for ME care:
The idea of 'behaviour' needs to be detoxed out of ME care and ME staff. I'd actually like to start calling it it's own 'ogyny' label. Because it is a manipulation and deliberate re-framing of when people are talked about or listened to making sure the facts aren't heard and are re-envisaged. And of course it is wrong and misleading and has led to the utterly terrible treatment we've suffered and the reason the whole subject hasn't moved on. It has also been the cause of huge harm.
All these subtle and not subtle tropes and messages need to be called out and de-toxed because they are feeding and perpetuating what we see all over the place.
To put it bluntly: the behaviourists have a behaviour issue, that noone is calling out due to their tactics (acting faux offended) and the target being generally the most vulnerable. But that paradigm and type of staff no longer should have any place in ME/CFS, and due to the history of it needs active action to remove its tendrels affecting our lives and interfering with any treatment or support.
Of course they want half-measures and little change. But the old tropey harmful 'guidelines' caused a huge amount of problems and need some black and white lines to be drawn on what is unacceptable to even begin giving people their rights as human being back. And the start of that is calling out the crap where people use old aggressions as an excuse in themselves to leave 'less bad aggressions' in as justifiable, instead of noting that means we need strong messaging calling out that any misunderstanding along those lines is now unacceptable.
They also don't seem to want to accept that their 'general' doing this speak to people like children approach was developed off the back of debunked research and ideas burdened onto pwme then spread under the guise and fake claims of 'MUS' and 'functional' and whatever other trend word. So
those need kicking out too, because they never worked for anyone. So dumping pwme under the same old claiming its OK because it 'general' not specific means all of that needs sorting.
Describing how PEM affects people's sleep and debility and pain in terms of 'behaviour' - when normal medics would ask about eg how is your sleep quality, is the pain changing or affecting that and wouldn't dream of having someone with something else being assumed to just not be behaving right and needing some training in it. People who've learned something by rote and want to offer what they want to offer and 'make those people fit it'.
Terming it 'help' is the classic. Whilst refusing to offer help of the type we do need when we need it - or even ask us all as a starting point BTW! - but imposing what they want to offer on us and telling us it's that. A lot of the nonsense on these plans are about telling others 'who we are' which is both inaccurate and is suggesting things which aren't priorities for us, but sure as heck relate to suggesting eg demand to GPs who sit on a CCG/ICB to sign off more of that stuff. It's a vicious circle.
We don't want money spent on mindfulness over functional support with forms or adjustments, we'd rather not being stressed by tasks we can't complete due to having no support then told it's our attitude. Thanks. And others we need to hear our symptoms being suggested we'd benefit from therapies to help us 'keep calm'.
We want a form explaining what the condition
really is. Consistently, so the misinformation gets slowly dissipated. A really good PEM description a la Workwell on everyone's plan could indeed work well from the advertising perspective of getting the penny-drop through. And we all know these people are the ones who one day might be involved with voting on what gets funded or not.
And I'd quite like at last these things to acknowledge I'm as straightforward, kind and objective as a person gets. You know 'who I am', I deserve to have that back please, without others being allowed to suggest nonsense that's all about them inferring anything else.
We have to desperately search for advocacy just to fight against the yelling telling us who we are and what we want and need. It's outrageous. And yes it is against informed consent because the very idea of behaviourism is removing the idea we deserve autonomy because 'they think they know better' based on suggesting and believing we 'lack insight', when turns out those are
their false beliefs. But accept no accountability when the consequences time after time prove that is nonsense.
