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Great result, withdrawn, apologies etc. The response from Sonya begs the question, how on earth did this get signed off by AfME? Did no-one disturb a couple of brain cells about it? Utterly baffled. ETA They say they are currently reviewing all their materials to make sure they are compliant...

What I do find encouraging with some of this recent coverage is that the media outlets are not giving a significant platform to the BPS mob, which I feel would have happened only a year or so ago (maybe even less). Ok, Wessely got a statement on the LBC slot the other night, and, rightly so...

That's a really good point, my brain hadn't connected the dots. It also feels (and I mean this in the nicest way to other current/previous campaigns from within the community) a grown-up, serious campaign.

Curious what this campaign is doing differently to others from within the community that is seemingly getting some media cut-through.

Merged thread BBC Breakfast Slot - #ThereForME Seen this shared on Twitter, the #ThereForMe campaign have a slot on BBC Breakie tomorrow morning (27/8) Something about this campaign seems to be getting some traction and I kinda hope that the slot doesn't have the usual AfME/MEA comment..

Thanks @Trish for writing this and others for very considered comment, it takes so much energy for people as broken as us to deal with stuff like this. I've not got the energy to digest the whole document, but my immediate, gut response is it is obviously well intentioned, but flawed and the...

Am curious why Walitt has been invited to speak at a conference that I think has a much higher standard than would be expected based on the study he is presumably there presenting/defending. Obviously, freedom of speech and all that, but, putting him on the same bill as Ron Davis? (I think...

They have said it’s not them advising on this.

My brain is especially fuddled today, but, I don't understand why MEA have shared it on FB. It sort of comes with a health warning (they are learning), but..

Thanks for sharing all this @Trish. I know lots of people seem to like the FUNCAP, especially as it's now part of the monthly cycle in the Visible app. But, I struggle with it for the sole reason that I choose not to do many things as part of the wider pacing/management of my illness...

You would hope it was an error, but..

It appears to need a Microsoft Business account (at least that’s what it asks me for when I try the link, so, will be inaccessible to the vast majority of those who will try to access it..

I read that right, 97 questions?! How is that realistic for anyone to complete, even with the acknowledgment of being able to come back to it numerous times? I forget what I did 30 seconds ago, let alone how I answered some questions days ago, so, I’d imagine I’d have to revisit what I’d said...

And, the MEA are pushing the study in their latest email Newsletter with a link to completing a/the survey. I haven't followed the link to see what it is as I don't want to give them the satisfaction of a click-through. Guess they are doubling down on it despite the concerns raised. -- The ME...

Did wonder what the Prof would be saying about the community she encountered here. Hopefully she has reflected on it all in a more positive light when she has spent time with her ball.

Hmm, this is an interesting new tack from PG - drags AfME into the mix on PACE. Slightly strange that he's not tagged them in his posts, almost like he doesn't want to be challenged on it, perhaps? ETA: I like the fact that @PhysiosforME have replied :thumbup:

Dread to think what the comments on this would be like!

https://parliamentlive.tv/

Like many, I'm intrigued what the elusive NICE driven care plan is, whether agreed or otherwise. I've been referred to a 'CFS' clinic in London (UCLH) where the form my GP had to complete, for the referral, was very NICE '21 terminology-aligned, mentioned that they can offer a care plan, so...

For those interested, there is an open letter that can be signed, that has been produced to raise awareness with Sajid Javid over the current cases we know about of people in hospital not getting care in line with the NICE GL. It will be sent on the 30th.