Maybe, but maybe people wouldn't bother to look, just take on face value the link between S4ME and AfME therefore assuming AfME perspective is based on science.
@Trish. I know you have asked Slyslaint and I am sure they will answer, but my answer would be on the lines of what Slysaint has already mentioned. Afme could align themselves with any successful S4ME initiative and spin it to their advantage, even if they work privately against the general aims of ME patients. They could use membership of this forum to give legitimacy to them as a charity that helps ME patients. Yet in my view Afme have not shown any root and branch change that indicates they now are working in patients best interests. Until they do (I wish they would just disband but know not likely in foreseeable future) I think anything that gives them legitimacy is not in the interests of patients.
Could they though? I'm a member of The 25% Group, but, as far as I can see, that doesn't give me anything I could use to gain status or credibility by association. I certainly can't arbitrarily claim to have their endorsement or support when I, for instance, write to my MP about PACE. It seems to me that AfME can't claim any official endorsement from this forum unless they ask for it and it's granted.
I’m afraid you’re being very naive. Any advantage gained would be on their side. It’s their MO to ‘mingle’ within patient groups in case they can use it to gain more patient support/members/legitimacy. Or it might be one of their insider patients who is a S4ME member who’s given them the heads up that it might be beneficial to them to have a ‘presence’ here. They are haemorrhaging members due to decades of psych collusion & particularly since PACE-gate. As I said before I very much doubt if they would read the science. But who knows they might actually take screen shots of this thread to pass around to back their usual smearing of patients
AfME have been on PR for a long time and they have never taken advantage of that. As someone else has said before, they acted as usual, tried to interact a little and fled away when questions started to become somewhat challenging. (it's so much easy to be in the safe space of their own FB page where they can delete any comment they don't like, I don't think they'll post a single word here). I think someone praising AfME would be very quickly answered. I don't see how AfME's spun could go unchallenged.
I actually think this cannot possibly happen. S4ME does not really have initiatives other than promoting scientific debate, which tends to show AfME in a poor light so far. Having an avatar here does not put a feather in anyone's cap, especially if no posts appear. S4ME has no purse strings or official status. Any claim to intellectual legitimacy through having an avatar here would immediately be made ridiculous on social media, including here. There is nothing anybody can take away from S4ME because it is just people talking. Or put it this way, nobody ever used a subscription to Private Eye as evidence of importance or legitimacy.
That would be perfect. The patient smearing business has gone quiet because the penny has finally dropped with the BPS people that they are making idiots of themselves. If there is any more of it we are waiting in the wings to up the ante big time (and probably will anyway). The emperor has been found to have no clothes on. The entire US clinician community have registered unanimous rejection of PACE. It was ludicrously bad. Let's have a screenshot of that on twitter and see where things go.
Fair point that S4ME has no official status and is a talking shop by and large, although they submit reports to such things as the NIH Common Data Elements initiative and I presume will do similar things in the future. My main concern is when I read comments on here such as, paraphrasing, ‘I am sure even if they have been misguided, Afme wish to help.’ I just hope people are aware AFME have in no way shown that they have changed and now wish to put patients interests first. My tuppence worth.
I wonder if you're trying to paraphrase me here. What I actually said was this: I suspect they do think that they're helping patients. But there's a chasm between thinking you're helping and actually helping. There are probably many here who think that AfME are simply evil and out for their own gain, and consciously don't care if they hurt patients. In fact, none of us can read their minds, me included. But you don't need bad intentions to produce bad results.
If you know that the forum has such a low opinion of Afme then what’s the point of them being members here? As you say they were silent on PR so what makes you think they’re going to suddenly become usefu/pro active here? For me it’s the principle rhar matters. When a patient organisation has shown decades of contempt/igonrance & continued silencing of the very patients it claims to advocate for, what signal are you sending to those patients by courting them simply because they are more powerful. Their actions have demonstrated that they care more about maintenance of their cosy r’ship with the psych lobby than they do about the lives of their own patients who are dying on a weekly basis. Last week, in the same week that we lost another valued member of the patient community, they were posting self congratulating tweets about their beamingly smiling CEO being on some obscure power list in a Bristol local newspaper. I find that appalling, but that’s what i’ve come to expect of Afme in my decades of having ME.
Nobody is 'courting' AfME. They were not invited to join, they simply applied out of the blue and were admitted. Quite the contrary of courting them, they have been heavily criticised on these forums in several discussions and none of these criticisms have been censored.
But they aren't mingling! They are simply a silent avatar sitting on a member list doing nothing. And being, quite rightly, heaped with criticism for all their manifold failings, so if that is their strategy it's surely a complete failure. Edit: sorry to keep arguing with you. I do respect your opinion and share your criticism of AfME. I think we will have to agree to differ on whether their being on our membership list is detrimental to us or to patients in general.
Has it really gone quiet or has it merely gone less public/more underground which has always been the case anyway. SW has had a travelling show for decades now where he carries a suitcase of patient smearing cuttings, screen shots, alleged death threats & presents them in closed meetings to medics (from students to consultants). I know because my Ex who was a research fellow with links to the institute of psychiatry at KCHL went to 1 or 2 of them. Esther crawly did it last year in her (closed) talk to the British renal association. Medical students are still taught that ME is psychogenic & soon things will probably get worse as it will be buried under the MUS/FD mountain for good. I really wish I could share your optimism Jonathon but i’m afraid ME patients continue to die weekly/monthly due to medical neglect/harm in darkened rooms or hospital wards & really nothing has tangibly changed & I have no faith that it will whilst we have the likes of Afme ‘representing’ us.
We are a public internet forum, open to everyone who has a valid email address, isn't a spammer and plays by the rules. Vlad the Impaler could be a member (if he was alive) and we wouldn't know (unless he used his actual name and started discussing impaling techniques, side effects and trial design). If AfME were up to something more dubious than usual they wouldn't have used their official email address. If anyone wants to see what they have posted and which pages they have read simply find them in the members list, click to open their profile and click on recent activity. You'll see that since they've joined they've done nothing at all. I'd guess they opened the account as a place holder, just in case they want to post at some point in the future.
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 they have thrown us (and continue to do so) under the bus enough times for us to have woken up to the fact that in their present form they are unredemeeble. Also as you say yourself they are just an avatar & there is no participation on their side so that is further indication that they are using membership of S4ME just for point scoring on their CV to gain more members. Don’t give them that gift so easily. Imagine the signal we could send our to them if S4ME as a body refused them membership and calmly & precisely & publicly explained to them why their membership does not match the ethos of this group? That would pack a much bigger punch than rolling over and letting them join anyway. That would make them sit up & listen. As it is, they won’t be reading this tread or indeed give 2 hoots about it, coz they don’t need to. They’ve already got what they wanted from you: further validation by mere membership of this group. They are now not even going to bother reading one single line posted, I assure you. This is a pattern with them.
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 most effective censorship: click on the block button et voila. I self censure myself now so as not to be blocked from their twitter. They want patients to be nice and compliant and cheer them on at every opportunity. It’s like North Korea.
