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:laugh::laugh: the sad thing is... what a life she has, now if only they'd step back and help us to be able to get some medical care and research breakthroughs ie actual treatment then I think there are a load of us who'd just go off and do any of these without any of the rest. The fact we...

it seems they just are a bunch who cant think outside the behavioural model. Very old-school/fashioned underneath it all. they can come up with different words in their imagination why it might be that their behaviour just needs fixing with behavioural training, vary how they sell the carrot...

To be fair they let some of their more obedient patients turn up to do a poem or a song to the audience..

of course she is pro-GET Looks like she would need to change the name of her company from 'Vitality' otherwise her bio on: Our team — Vitality 360 "Jessica is the Founder Director of Vitality360. Her vision was to create a range of personalised therapeutic services that provide extraordinary...

OK I had to double-check but this seems to be potentially Jess Sands who is running these sessions: Jessica Bavinton Our team — Vitality 360 you'll note it is Jess Sands (Bavinton), Founder Director of Vitality 360 WHich is the same name as the physio from the ME Association article...

and for the 'sleep' presentation: Ms Kirsty Vant (gold.ac.uk) "Biography Kirsty Vant is a public health nurse and CBT-I therapist, she is currently completing a part-time psychology MRES. Kirsty is interested in the relationship between health, well-being and sleep, she is currently...

Invited in by a bunch of people metaphorically chasing us with a stick as we try to escape saying to outsiders 'the bastards don’t know what’s good for them honest, we do this because we care, why do they keep saying what we do harms and doesn’t work the horrible, mad, scroats'. At least they’ve...

Here’s the other thing I don’t think BACME members do want to save us or help us - it's never been about the people or patients (just pawns). I don’t think that their programme even reads like that anymore I do think they are deluded by their own sales spiels and their job titles saying what...

I think there was another item/session of another conference where they used ‘ly’ at the end of Nice I couldn’t be doing with it at the time but of course it’s two fingers up at Nice they mean ‘sort of adjacent and nodding to’ at best. To me it smells / sells like people with a supply-led/...

Someone on bacme has a mate or relative wanting to set up a business in it?

If we really wanted to push it the you could finish by asking for a charter of adjusments / behaviour / ethics for ME - I think it’s been mentioned somewhere in a slightly related form and could include thing like a committment towards behaviour/list of adjustments that allows a fair...

They are linked to not requiring that the psychiatric profession understand autism properly - just like health conditions if a patient has one - they should be capable of understanding what is explained by these in calibrating any assessments if there were potential comorbidities and knowing...

I think they can. The ‘new/breakthru’ of SSD is that unlike its predecessors they don’t need to be free of such other conditions or prove such symptoms aren’t indeed caused by them …. Just be ‘anxious enough’ even if you did have a really bad cancer and other illness etc

Partly replying because agree this is important and also agree timescale typically screws us. The biggest ‘sitter’ going by the three things they’ve enphasised (good, bad/issues and other) is perhaps using how decodeME actually properly started by building in proper adjustments that meant...

:hug:

Symptom (to doctor and society) simplified as ‘moaning’? Treatment = what ‘deals with’ making them go away?

When we compare this item to the PROMs I'm curious whether they have gone out of their way to fix this (ie whether this happens to coincidentally justify changes, or whether they've done the same thing with the PROMs measure replacing it anyway)?

accurate narratives rather than accurate information, science, prognosis, diagnosis, the list is endless on the important things they don't mention. says it all really about an area if the most important bit is the sales spiel that even a marketer would - in any other area due to legal...

I wonder that, and note the references people make to Meyers-Briggs are probably more generally but the one job interview I’ve ever had where someone had added something like that in I was intrigued that it seemed to be more about asking the same questions (about who you are and you personality...

@Tal_lula might be able to confirm whether she is happy with this summary but the original post from here (which included the letter) detailed her fuller experience, which notes reasonable indications that the individual she saw was potentially using terms more consistent with 'FND' these days...