Why can't they just talk to patients directly?
I have serious doubts that anybody who not had ME/CFS could reproduce a decent simulation of it. Quite concerned about the risks of this, actually.
Would agree but it’s the listening/hearing and respecting and taking on board what’s said rather gab the think they know better/we are to be managed if manipulated that’s the problem with hcps ie definitely not them doing the talking without knowledge.
Had a recent encounter with a physio for something else. The woman was vile and knowing what I had came in with a face like a slapped arse from the start and clearly thought I had nothing to offer. Pathetic but seems to be the way the few who could listen and interact like human beings sadly are moving (tho sometimes due to their own ‘issues’ that I thinks also prevalent in general pop of mental health or culture things since covid lockdown let them avoid people)
And definitely can’t be arsed with being expected to have answers about when is it too much - instead I got more bigot I assume to cover their pretending it wasn’t their gap in knowledge or doing their job with a belief ‘nothing is too much’.
Who knows what was wrong with her but yes it was bigotry and I had someone else with me who got to observe for once and it started before she’d even seen my face or heard a word. So strange. Tho she did say you can adapt exercises eg do them in bed , just seemed to have a pre-set idea in her head before I spoke that I’d be lazy/‘afraid to move’. That the only possible problem would be me not doing enough of moving it , the other way round of possibilities couldn’t possibly exist.
So she couldn’t be an adult ever of hearing what always happens later which is if I do a little bit too much for me the whole body area flares up and goes backwards. Which means they don’t want to deal with us because if you have decided before you start that you won’t hear or see fact or truth if what happens because the Chalder-esque vile slurs are in their head as if we are made ‘phobes for no reason’ you can’t do a job.
I’m bored of being ignored like my voice is just there to pause whilst u speak then ignore and carry on as if I’m an interruption they’ve been told or just got in their head wasn’t worth wasting their ear energy on. It’s hard to describe how strong a person you have to be to take such behaviour designed to psychologically injure and make you nothing and that shouldn’t be allowed. So I’d be tempted to do a test equivalent to the ‘how did they speak to the receptionist when they came for a job interview’ type thing and catch out behind the scenes chatter to find out those who just intend to ‘deal with us’ etc.
But I don’t think they stop to think or get a simulation of what it’s like to have what they think should be water off a ducks back ten times a day for thousands of day in a row. And how we only get the horrible side of people they claim are supposedly nice underneath. Which shouldn’t mean we have to call them nice or with good intentions. People seem strangely confused by that - that they should be judged on how they act.
Yes there is a danger the ignorant take it as learning to manipulate the situation and patient (or their words) to get what they want . So any assessment probably needs to be explicitly looking out for that disrespect (understatement of a word) and requiring resits ie failing hcps doing the course on that basis - instead of listening to be interested listening to be sociopathic at best and at worst twisting someone’s words in notes etc.
Problem is when talking about severe me/cfs even when it’s needed for something else we have to even consider whether something at home with a physio so kind it hardly exists would take out of us. Just a conversation is a lot and even being manipulated causes me huge payback to the actual body part as well as others no physio would think logical. So if it is trying to train lots of hcp I can see why it needs to be simulated , particularly if training is at a hospital.
But how do you get that point across to someone - that the simulation of some poor severe person having to travel to a hospital for it is definin current system likely to happen but it doesn’t mean it’s sustainable or good - and not to kid themselves because we turn up with a smile the first few times, (because we really are the biggest try-hard kind people underneath that’s why it’s so shocking the snarky dismissing slurs we had) and try and give ‘positive’ feedback because we want to be open minded that it isn’t a typical pattern that by the 3rd, 4th onward it’s starting to do a lot of harm and it’s only by then we are sure it really is that and no we will have checked it’s not how we are doing it etc.
Plus the journeys will be biting massively. I don’t know how that’s solved with the nhs set-ups, how much control those attending said course have other any of those factors and whether it’s in any hcp control to offer home visits video, and really understanding how important time of day options is vs of course every patient will say that. I’d spread them further apart too.
