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And not that random/new. What I'm slightly hoping is that there might be some things from eg the market research society where formats like this have been tried - and if not why not get in touch with them? It sounds so pertinent for ME research, plus an interesting development for them...

Yes and yet people lumbered in this situation are important yo include and there should be ways around this such as vouchers (how does that work re benefits?), and we all need things like food shopping, or potentially other useful items (good reclining electric wheelchair, can’t think if other...

There’s a reall issue there isn’t there - constructive criticism and the belief of some that they can behave in s certain way when they don’t like what they hear and then try and blame that outburst on the patient - all because they want to invalidate the input because it wouldn’t work for them...

It sort of sounds like they are touching on asking themselves that same question in how robust the reply sounds about fixing things. Which if so I’m very pleased to hear about

Thank you Trish for your work on this I am so relieved that finally something doesn’t feel like a fob off inferring really it’s the patients fault etc that it felt we’d been getting habitually / knee jerk been believed to be the problem again. It was starting to feel desperate that our allies...

Is the IAG the same as these PPIs technically because if so it makes one think of that lurch those involved with that might be in. Even healthy people would be given the timeframe changes/movement. And to feel potentially over a barrel if you left and the political implications that person might...

There would be nothing more immoral than inviting someone in who gives what they don't have in good faith, more than was necessary, to find that same level of effort (all of what they had and more) isn't being matched in attempts to understand and represent that fully/it isn't genuine. So those...

I think a particular point is that I don't want to be in a situation where my experience isn't respected and there is some sort of discussion or debate process based on arguing with either people who are less ill than I am nor staff. It's not on. I'm adding something they don't know about and...

I'll hopefully be able to add more at another point but I've had a quick scan and agree with the responses regarding this needing significant adapation regarding committment and timeframes related to that, normally much longer spread out than people anticipate when they don't really understand...

I agree that we’ve an issue where many don’t understand that the iller you get the more gargantuan effort is required for things less ill don’t even think about doing - brushing their teeth is nothing and almost automatic whilst they get ready and think about the day. The determination when you...

It’s basically calling a bit of gaslighting ‘medical care’ or redefining what counts as ‘we offered care’ isn’t it no longer investigating nevermind treat and different staff not healthcare for all as their papers seem to contain hidden or not so hidden messages about who to target , listing...

As a side note to mention without at this point feeling up to going into detail but I suspect with some of these - particularly where they might be studies that could be breakthroughs then I think some of this might be to do with the way articles work if it gets picked up by the media. the...

If it wasn't for a small sample size then this is one of those papers to add to one of those threads for 'debunking the orthodoxy' because it proves that whatever expectation they had that wasn't what made the difference ie they proved their 'null'? Worse, as well as expectations having...

Uggggh I wonder how well they checked for whether there was maybe a bigger confounding factor that was causal to both expectations and outcome I find this new propaganda so scary as it’s stopping the disabled from expressing their limits . It really is hysterical women / wimpy disabled people...

So rather than confirming if either is good enough to start with given some of the stories we’ve now heard of sub appropriate hospital care they focused on comparing the two suggesting merging them on basis those who had explained symptoms getting that were equally something in a quality of...

This is particularly interesting because it is about after-effects ie what exercise can trigger later as a cascade?

Yes I understand I will too if I can they could have the term mismatch or contradicting messages I’m not in a position to say I’m on top of all the lingo in all areas of psych these days vs previous years but there is always choice in terms used so somewhere I suspect there’s not necessarily a...

I haven’t read where it is but will note this: stroop involves having the word red presented in the colour green you are then battling to focus on what the word reads as rather than the colour it is written in like a sort of Pat your head rub your tummy so it might be relating to those...

Tbf (and I know we don’t want to start this off as a side thread) I’m glad to see ME but I’d rather ME/CFS as an acronym started to embed and everyone forgot what it stood for because it’s all misleading. So there is a sense of there being one issue when ME is used because they then use...

Out of curiosity is this something / a ‘management technique’ that is more prevalent in societies with eg socialised medicine , particularly like the nhs who seem to have started with x promise years ago and there is a lot of behind closed doors back-rolling to try and now ‘not cover x y z ‘...