Ash
Senior Member (Voting Rights)
Currently crashed so not able to say much.
Very pleased by this response.
Currently crashed so not able to say much.
Very pleased by this response.
Currently crashed so not able to say much.
Very pleased by this response.
Trish you're a complete marvel! Thank you so so much, i know this took all you had for the time it was being drafted. And to all who gave input & edits too. You have helped many many people by doing this.A great result, thank you to @Trish and everyone involved for the work put into this. Though in an ideal world they would have not needed this prompting, credit to AfME for acting decisively on this.
Yes, I'm pretty impressed with AfME & Sonia Chowdary over this, I know where my membership money will be going next year! After the PACE debacle i never thought I'd say that but it just goes to show.What a difference between the responses from AfME over this and the MEA one over the PROM thing. Very impressed with such a thorough mea culpa - not only a proper apology but concrete steps provided on how they’re going to do better, such a contrast with the patronising gaslighting from the MEA.
Thank you Trish for your work on thisThanks for posting the reply, @Andy. Yes I received the reply by email today.
And many thanks to AfME and Sonya Chowdhury for taking concerns from us and others seriously and acting quickly.
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 Which if so I’m very pleased to hear aboutGreat result, withdrawn, apologies etc.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 with the 2021 GL. Now my brain may be mush, but, that is the GL that was published nearly 3 years ago and they say they are reviewing stuff against it, now?!
They are a national charity representing people with ME and only c3 years down the line are they reviewing their materials to make sure they are GL compliant. That should have been priority upon publication, surely? Is it any surprise that we are so badly treated? AIBU here?
I’d like to say I share your optimism - time will tell I guess.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
NO I agree you are right to be cautious, good to hear a line about new ways forward involving seeking input though - but yes, too true there is a chance I've read what I hoped for into itI’d like to say I share your optimism - time will tell I guess.
To be fair to AfME though, it was a pretty unequivocal response, so, they may be taking things a bit more seriously as a result of this.
yes on the it is interesting to understand more about these things and the different 'forces' in the charities that might pull one way or another. As I guess that is 'who/what' these things are, and I'd be intrigued to have a run-down for these players so I can understand more what the landscape is in that way.Reading between the lines, “the Board” considers relationships and I suspect that there’s a relationship at that level with Gladwell that is above Sonya’s pay grade.I think he’s been involved there since before her tenure.
respect , that’s the word.
Yep, BACME are a complete waste of our time and lives. Sooner they are left in the dust of history, the better.What we now need to hear is that AFME full stop finish 'their reliance' on Peter Gladwell, the North Bristol Clinic, and most definitely BACME. Those orgs/individuals must in future be nowhere near ME guidelines, projects etc. The idea of slowly slowly educating BACME is just fantasy - we don't have any more time for that.