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Aw gawd both seem personable outside our arena but historically regarding me/cfs these seem two very different beasts not that I know for sure what Jacquu thinks on all the tendrils that massively affect us? but then I don’t know much about Meddings or whether it’s normal for that role to have...

I agree in the sense of a weird angle that might be just anecdote based on assumption. Those who I know who have said they have PVFS have been very sure about it. Far more sure than anyone (except maybe the ones who had the suddenly extraordinarily ill and bedbound for years from the start...

Yep it’s called being honest and getting consent without wearing them down with unnecessary questions then hiding the relevance with ambiguity

Am I right in thinking this got to the ‘of course we must’ stage then quietly dropped for whatever dumb reasons - unless there are any not dumb ones I’ve missed I can’t believe it finally got thru and I missed it because it would have been in the news? so demoralising that this stuff happens...

Sounds like the sort of thing we should all (all those with various diagnoses or misdiagnoses) be joining together to say ‘no more’ on, particularly no more on the silencing is then putting words in our mouths that the misinformation or worse than useless pseudo treatments are good for us or...

The stupidity of not realising (in this example) that those who are able to get and keep a job is a test/filter to find the most well/least ill, rather than a treatment and yes let’s see the long term. This bigotry again First they have to ‘accept the diagnosis stuck on them’ to get off the...

I would say it can’t be taught by rote or examined by plain written question without being played But I think it can be taught just not all can develop it. However truth is that that type can be identified quite easily during an admissions process and during all the windows in the medical...

Plus not only did he have the power of running some of the trials and picking the therapists but he ran the royal colleges for these professions and had his hand in being able to make decisions on ‘untrained’ being pushed through the system. I’m not sure his definition of untrained is the same...

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...