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At the end of his tweets (point 5) he’s saying that, to him this shows AfME prefer ideological bias over science (paraphrasing) why did he decide to start tweeting this- which seems to try to undermine AfME- yesterday? (Again, I’m not a scientist so the media/social interests me).

Who put 50p in him?

I read the proposal - they actually do an easy read guide, these save me a bit of energy where the subject isn’t that important to me...

Ah, if it was a record, they would have cut the ear seeds anyway! Excited for when it drops, well done!

No help for you, but where can we watch!?!? I’ll send you extra good vibes if you can say that it’s like Ear Seeds in terms of validated scientific research outcomes/s

I’m not worrying too much yet, I don’t think there will be the draconian sweeping changes that they’ve mooted even if the Tories stay in power. In the meantime I’ll be gathering as much medical evidence as I can and trying to build a little cushion of savings. This kind of “prep” helps me...

What I meant was, as a patient I can prove that GET isn’t helping me. Back in my day, we barely had the internet, so being sat in a CBT session and told to keep increasing activity sounded like BS, felt like pain and so what could I do? Now, we have the wearables to do the monitoring, which also...

I hope to think that the “Pandora’s box” is open now - wearables are advanced enough to give detailed information as to whether you are “overdoing it” or not. This puts the patient in charge, and the results will show “incremental activity increases” or as it used to be called“GET” doesn’t work...

Good behaviour contract? I agree it’s mental health/addiction type language, or management speak for an appraisal, personal development plan or performance improvement…

https://www.s4me.info/threads/do-you-have-a-uk-nice-care-plan.37014/#post-512796 I asked the question about whether people have the NICE care plan. UCLH was mentioned as looking to use them. I’ve been filling my own in using the template (see thread for link) I doubt I’ll ever meet a HCP...

You’ll need to opt out because their “treatment” will make you unwell, but they’ll let you come back and try again. we saw some similar language in the WRAP guidance for mental health patients, which BACME referred to in their guidance.

I think it’s reasonable to ask them for the info the AMRC states in its guidance should be available to the public, because MEA states they follow that guidance.

It says they follow AMRCguidance https://www.amrc.org.uk/listing/category/amrcs-principles-of-expert-review

Thanks - I never know how to do that with the text, I managed it once then forgot!

It’s the Ramsay Research Fund isn’t it? https://meassociation.org.uk/research/ I hope there’s a panel- seems to be the Trustees

It makes me feel sick - literally queasy- when I think of the psychobabble which has infiltrated my medical treatment. A GP, on hearing I had ME - did your parents divorce when you were a child? Me-er, yes GP - oh so you had a traumatic childhood, that’ll be what’s caused this. Dr Fraiser and...

https://www.bmj.com/content/383/bmj.p2372/rr

It’s inconvenient to their belief system and personal values. Sunk cost fallacy. The dominant hegemony doesn’t overlap with the patient group (it’s misogyny) a bit like trying to convince the Met that they’re institutionally racist and sexist. we actually need a psychologist to look into it.

I think Psychwashing works, but how about Healthwashing? I say this because of Sunak’s plan with sick notes, and it also reminds me of working, being referred to Counselling/Employee Assistance Programme. As in “well we have done our bit to support you by giving you this, so now it’s a “you”...

Ok it was only off the top of my head.