Maybe it’s because they are a generic/vague fatigue organisation rather than a specificallyM.E. one? Chronic fatigue is a dust bin diagnosis...
They’re not interested in dialogue with patients unless it fits their agenda. Any of us who don’t sing from their pro BPS hymn sheet are summarily...
I don’t want my GP to be educated on ME by Afme. It’s like asking Nigel Farage to educate MPs about the EU! I have severe progressive ME and it’s...
@Jonathan Edwards. Oh I didn’t know that afme had stopped supporting the ME biobank project. It was their one single positive act in their 30...
It’s still the case. They have never even criticised SMILE and LP. Do they still advertise LP in their mag?!
It’s not old news, they continue to refuse to even criticise SMILE let alone anything more. MEA and Charles Shepherd did so clearly on radio 4...
@TiredSam, Unfortunately ‘Within the S4ME rules’ caveat can also be used to turn the heat down/off on Afme. Personally I think it makes no...
I think you’re being admirably optimistic if you think that Afme will actually reply beyond the usual fudging of this issue. There is no will on...
Patients are regularly blocked from your social media for totally innocuous remarks. The common factor seems to be anyone questioning your decades...
Totally agree. More fudging and none answers. This has been Afme’s MO for decades.
I think it’s very important to make sure this forum doesn’t just become another platform for an organisation as powerful as Afme to spread more...
Yeah I thought so, which makes the continuing MEA CULPA meaningless
Precisely. MUS label illness: don’t do any more costly investigations and fob them off with CBT/GET
Wish I could share your optimism. Also not quite sure the situations are analogous? Russia had 30m people as cannon fodder to beat hitler. A group...
@lisette, the issue of the ‘possible’ continued support of prof Crawley by Afme was raised on FB last year. That’s when the CEO made a post...
Oh, there was me thinking that afme joined this thread under their own volition rather than being prompted. Tx for your effort for directly...
Precisely. It is very convenient for an organisation to hide behind the ‘rule’ book & use it as a means to silence legitimate concerns by those it...
Yes that’s one of the possibilities Lucy. It was around the time that Crawley was doing her media blitz (with the backing of SMC) on SMILE &...
Hi Clare. Someone here mentioned it might have been on the AYME page. I try and see if I can look for it at some point, as i have seriously...
I think those of us who are banned from their page don’t have access to this search option?
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