Hello there. May I ask if as you say you want to hear the views of the patient community, why you block people from your social media when they...
It might have been deleted. It was about 6 months ago I think. Let me see if I can find it, wh That might be because we are blocked from their...
No it was on their FB Page Jonathon (would take me a while to find it now) and it was adressed generally to all patients who had scrutinised them...
Sorry Johnathon but only 2 or 3 months ago, the CEO of Afme called those demanding clarification on their extent of involvement with Crawley’s...
Exactly
Precisely. It’s just changing names/faces. Not totally convinced that the ethos of CMRC has changed yet? With Holgate in charge the potential for...
We have tried to put these issues to them for nearly 10 years. As I (and others here have said), they block you as soon as you say anything other...
Well said. They infantilise and patronise patients, not only refuse to listen to us but stop us from using their forums when they present the...
Did I say we get drochonian and expel them? No. I mentioned a carefully/calmly worded public statement reiterating what the ethos of this group is...
But I know many US sufferers who tell me that solve cfs is just as bad if not worse than Afme. We are decades down the line and at this stage we...
In other words they’re covering their backs, so yes it’s all about them self preserving. It never amazes me how they use patients when it suits...
By Post you mean self promote? Anyway according to other members above it looks like they only joined to gain access to letters someone had...
Tx for speedy posting. I’m still curious why they wanted to see this correspondence. Surely they would be aware that they were part of the PACE...
Oh i see, is this already in the public domain? I’m not sure I was aware of that. Also what if the PACE, CBT/GET psychs are simply being replaced...
I see, is this already in the public domain? I’m not sure I was aware of that. Also what if the PACE, CBT/GET psychs are simply being replaced...
Oh I see. Not seen that thread, will have to look for it when have the energy. Arms rapidly dying. Is it possible to post a link to it here? Tx
My point of view is that it’s against the ethos of a group where we bust our guts to debate/promote the science of ME, to have the likes of Afme...
Not censor, publicly and openly and calmly explain to them why their membership doesn’t match the ethos of this group. This isn’t a group for self...
If only they would extend the same courtesy to patients who try to engage with them on their public forums. If you ask any difficult questions...
Trish for me, it’s the principle that matters. Ok S4ME didn’t court them but there are those here who believe that Afme joining here is somehow a...
Separate names with a comma.
