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They don’t have Myalgic encephalopathy/encephalomyelitis/ME orME/CFS as a heading under M either…

Tyson and Gladwell appearing to talk about PROMS…

It’s fine. These people have an unknown novel condition, which means they’re the experts. If they go back too early, it’s on them. do I need to indicate sarcasm?

I think it was because he was promoting the Free Speech Union stuff. This was on linked in https://www.linkedin.com/posts/paul-garner-bbbb467_how-we-learned-to-question-medicine-professor-activity-7191384764904341504-5ZtL

I didn’t want to have to look through his timeline but I saw some other AfME dragging. AfME is all over decodeME so I’m hoping chickens will come home to roost next year when factual physical science things can be said about ME. As for the PACE dinosaurs, their time has been and gone. We’ve...

He can “drag” or try to smear AfME all he likes, but nobody cares what a charity’s involvement in some research was, over a decade ago, which they’ve since issued a statement about. I think when DecodeME concludes next year, AfME will be the good guys. And by the same token, I can clearly...

The whole thing gives “post truth” DARVO vibes

The whole point of his tweets is to say AfME had ideological bias, and despite designing part of the PACE trial, after the results were in, they distanced themselves. Apart from that not necessarily being what happened, what’s the point of telling people that AfME is “ ideologically biased”...

I fear something is afoot. Maybe Blue Sunday looming? Maybe he’s been genning up since his session with Toby Young the other week?

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.