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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 express their views or ask any questions? I’ve seen it happen several times in the past week alone on twitter, with various patients mentioning your...

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 FB? I distinctly remember the terms ‘vexatious’ and ‘time wasting’ being used. Maybe it was later deleted or the thread closed/deleted? @Lucibee

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 about funding Crawley’s research in the past and possibly vicariously in the future. She called the inquiries ‘vexatious’ and the patients ‘time...

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 SMILE, vexatious, on their own page. She accused patients of wasting her time with unimportant matters!! Also as i said elsewhere on this thread, the...

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 change is restricted

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 than ‘oh Afme are lovely’, if you contact them privately they either ignore it or reply in rude/hostile manner. The CEO uses the vexatious label on...

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 carefully orchestrated message that ‘all our patients are happy with us’. Yes coz anyone not going along with their cosy little story is banished from...

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 and why its members are uncomfortable with Afme being the usual non contributing silent member. I bet they took what they wanted (the DWP...

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 should not have such low expectations of our advocacy groups. They exist coz of us patients yet they don’t act in our best interest, far from it. They...

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 them. Nothing new there then

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 written to the DWP in the past 14 years which includes the time they were helping DWP set up the PACE trial!

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 study themselves and in fact instrumental in patient recruitment etc. They’ve enabled DWP to shaft ME patients

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 with the MUS/FD neuro-psychs? Same substance different style/semantics. Having a neuro in front of psych doesn’t negate the fact that they’re still...

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 with the MUS/FD neuro-psychs? Same substance different style/semantics. Having a ‘neuro’ in front of ‘psychiatarist’ doesn’t negate the fact that...

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 who just ‘collect’ patient forums to substantiate their CV & maximise their memberships. We have a golden opportunity to hold them to account here...

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 promotion it’s a debating platform and that’s the last rhubarb very good point. It’s against the ethos of such a group just to join as a formality...

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 they block you so fast you would not know what hit you. Almost everyone I know with full blown/severe ME is blocked from their social media. It’s the...

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 positive signal. I’m afraid it’s not. It’s just an often used tactic of theirs to give the impression of engaging with patients while in reality...