@Lilpink since you're pondering out loud, as it were, what's not to like about AfME choosing to join a science-based forum? It seems a positive thing to me. Especially if they engage. And if they don't, but simply read, then it's surely good that they are exposed to the views of all patients?
Imo AfME are part of the problem, have colluded with the BPS paradigm and should be removed. If they didn't exist I'd be happy. I don't know why we condescend to them...
I agree with @Indigophoton. There is no condescension involved (probably not the right word anyway). I for one would very much like AfME to read everything I say on this forum, in the hope that they will see the real scientific debate. Shutting people out seems to me like admitting weakness and we have no need for that.
frowned upon/discouraged on their own patient forum eta: they have been members of PR for a while eta2: but they haven't posted there since 2016
I don't agree with that pov, and many of my fellow sufferers agree with me. Obviously most of them don't inhabit this forum. I think if this is the majority feeling of this forum it's not for me.
Well we can't make AfME stop existing, so we might as well try talking to them in case it helps their understanding of the disease and scientific concepts And if they have a presence here, it's a lot harder for them to claim that they don't know what's going on or what patients are saying. They've gotten a lot of things very, very wrong when it comes to ME/CFS research, but they aren't evil and they probably really do want to help. The solution to misguidance is providing proper guidance, not rejecting them and sending them back to Crawley & Co.
How can an organisation join a forum? Who is the actual single named person who has joined here. I don't think an organisation funded by members should join a public forum and hide behind the organisation name, we should know the single named person we are talking to.
I frankly don't know what the motivation is behind AfME and their actions past and present. I was a member when I was newly ill and gave it up as as a bad job. Their membership here is neither here nor there in terms of the discussions we shall have and the arguments we put forward. If they choose to post, fine, in fact good, because then we can have a proper discussion without awkward questions being deleted. This cohld be very informative for the more newly ill and less politically aware. They are one member here. Every other person's opinion is just as valid. ETA: crossed with @large donner - that is a good point. Charles Shepherd and now Russell Fleming are up front about being members on behalf of MEA and had to handle any resultant flack.
I thought that new members were requested to make an introductory post. Perhaps afme could avail themselves of the opportunity to allay suspicion and minimise dissent amongst established well regarded members.
Well reasoned and reasonable attempts to reason with, and educate afme, carried out by countless well informed patients/advocates, over decades, have made no impact on afme attitudes, policies and practice. Only resulted in more sophisticated rhetoric from afme to circumvent all the concerns and criticisms of the charity's actions and alliances. Afme will not become educated about the science here, any more than they have become educated about the science or the harms of BPS politics, by numerous well read, often well qualified, advocates over the many years, decades actually.
I don't have a problem with anyone joining the forum so long as they abide by the rules. I'm sorry others are disturbed by this. Since we don't require people to use their real names, we can't know who most people who join are - for all we know the worst proponents of BPS nonsense might be here too. I hope, if they are, they read and learn and mend their ways. We are not an exclusive club for those who agree with us. We are an open science and community forum for anyone interested in ME who is willing to abide by our rules. I am trying to understand why some people are unhappy about AfME joining. Is it more disturbing than, say, an individual member of AfME staff or board joining under a pseudonym? I'm not criticising your concern, I'm trying to understand what the problem is.
My issue is with an organisation joining. Imagine if, "the goverment" joined or, Bristol University or the DWP. It's one person one account here and yes we dont have to use our own name but our posts here represent a single person behind such posts. If AfME has actually joined here we have to be sure its them for a fact, whose views they are representing and that its a single person speaking. However, that's not the definition of an organisation.
The UK Biobank did not collude with PACE, facilitate funding Esther Crawley and Peter White's research, support the damaging NICE Guidelines etc etc.
Who posts for them and can anyone in that whole organization use that single account and do they even have permission to speak on behalf of all their members without identifying themself?
