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PS as a sidenote I spend a lot more than normal people do therefore on pillows and toppers. I try and make sure my pillows have cotton outers (as well as pillow cases obviously, this and finding pillows soft enough that aren't feather has sometimes been no small feat), similar with any toppers...

I'm similar in the being able to move just enough (in bed, and then some time out of bed although this varies wildly based on committments inducing PEM) I'm not sure I'd count as 'immobile'. I cope by having a large bed, heat pads etc and a lot of pillows - and except when I am at my most ill...

Oh and the awful idea that offering some bs placebo which is less good than telling people to burn sage once a day ‘to give them hope’ is ok to ‘alleviate the uncomfortableness’ which is the very message the real ME articles are putting out there of it’s not ok to refuse any medical care for...

Yes she’s being manipulated there with that idea isn’t she. I get so many bigoted healthiest trying to these days enforce ‘hope’ on me in ways that really are just hurting he invalidating me and an excuse for them to talk nonsense and get back to what they fancy I know it’s BS. But then I’ve...

Medicine doesn’t take kindly to scientific oversight like eg the me/cfs nice guidelines analysis of their methods but heck it needs it. and it needs to be kept separate in recruiting and career pathways so those oversighting don’t have to play nice because those people might be on an interview...

The thing is that the people being asked are the people ‘in it’ in general so of course they say more biopsychosocisl when that’s what advantages them noome is going to think beyond the system with all its weird silos it has been trained to think is normal and the weird propaganda it gets fed...

Major attitude issue isn’t there as if anyone wants to go near an nhs ward if they have any choice at all

Absolutely bad knowledge has a huge amount of budget time and resource being bedded in simply because people don’t want to admit being wrong even when it’s a case of learning something new vs at the time the amount of money on justifying misdiagnoses and burying them instead of putting...

Yes but also don’t give those who don’t truly have that skill (aping it by pretending to be nice isn’t the same as insight) the power in any role that really needs to rely on tgat. There are enough who have empathy who can supervise and fir some reason despite this being the skill least...

Hmm the old starting gun on game theory where people are pointed to focus on compete with each other rather than wondering why it’s all so cruddy or where the money is going that might not be productive to any patient the idea that the nhs serves all is the biggest myth in the books, and as...

I think something worth adding to the list with this sector in the U.K. is that most inpatient care is I think now done via private providers (paid fir by nhs ) and this has been grown over this period. whilst iapt was put in and sucked funding out of local actual mental health teams with...

Yes but it’s also about the power others realise they’ve been given to make people second third and for us fourth class on the ‘whose needs vs wants come above the other scale’ they realise they’ve been handed and that human nature can’t seem to resist the chance to put the foot on the neck...

And telling people who bigoted us that sop of we know they aren’t bad people and of course x,y.z even though they just did something saw the harm on the other person then chose to dismiss it so they could choose to do the same thing again and are now putting their hands out using social pressure...

Can’t wait for someone to write a plan for me deciding that on a day where I need company replacing watching tv on quiet with getting a task like brushing my teeth then meditating for twenty minutes is ‘fine for me’ when that situation persists for years on end. if you haven’t been there you...

It’s like innocent prisoners can’t go for parole if the don’t admit doing the crime and take responsibility for it but you can’t appeal if you do

And maybe offer support at an earlier stage ie before submitted and during their conception to ‘what will the project be’ process ?

And sleep hygiene/reducing rest. if they are still being forced in people anyway then the ethical but has been blown by someone else anyway.

Yep it’s weird it seems to be a specialism where they don’t do clinical research of the type where they get to the bottom of what the mechanism of the condition is or the biological issues to develop better solutions. And everyone just accepts it. And a lot of the drugs aren’t great fits as far...

These guys are charading under the real stuff and have been destroying that I suspect it’s the same playbook we’ve seen where you go opt a few patients to say they are recovered snd be evangelical (cos they’ve now got a new meaning in life/career by doing that) All the fake...

I like the light being shone on the behaviour of others one thing I noticed the bps ideology gives permission for us that insinuation we might not be right of mind or over-sensitive gives a free pass to people who you realise it was only being frowned on by others if that person told on them...