Action for ME has joined S4ME

Docsimsim said:
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.
Click to expand...

Isn't that all the more reason to be pleased that they're here, where they don't control the ground?

Wouldn't you like to put this issue to them yourself? @AfME.

I agree with those who are saying that their registration looks like they've laid a placeholder. I think they intend to post at some point. And here we are, ready with lots of questions. :)
 
Docsimsim said:
Ok S4ME didn’t court them but there are those here who beliebe that Afme joining here is somehow a positive signal.
Click to expand...
I haven't read anyone in this thread interpreting them joining S4ME as a very positive signal. Maybe one or two members have said 'Well, maybe they'll learn something' but I haven't noticed anyone hanging up the bunting or opening the best biscuits.

Docsimsim said:
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.
Click to expand...
I know, I've had FB posts on their page removed. But here, at S4ME, we're better than that.
 
Docsimsim said:
It’s their MO to ‘mingle’ within patient groups in case they can use it to gain more patient support/members/legitimacy.
Click to expand...
[My bold]

I think if they tried that with S4ME it would backfire on them big time. We are highly aware here, and have some fantastic advocates, including many of the folks unhappy with them being here. We have the wherewith all to stand PwME's ground here in the face of any such behaviour, and I'm pretty amazed some of our most potent advocates are shying away from that. The reason their MO has succeeded so long is probably because no one has had the necessary to do that until now. Let's make a difference!
 
Last edited:
From experience as a former AFME charity member, and former facebook member, long banned, I got the strong impression that afme operate a kind of 'Tyranny of Niceness'.

It was intensly frustrating, and isolating to be infantilised and patronised with nicey sympathy as a severely sick member nearly 20 years ago. When what I needed was medical rights advocacy, seriously. I needed an actual medical rights advocate. AFME were just clueless.

After 2 or three years I left the charity as a member, having spoken with all the staff and the CEO, I could see no point in remaining as afme did not represent me or any of my needs. Everything seemed wrong, I thought surely I cannot be the only person to think so, and of course I wasnt.

Years later, long after after I got online and very informed, I joined the AFME facebook along with other patients/advocates and posted important research and documents. A number of the AFME facebook members started getting politically clued up, and now do advocacy too. But most have since been banned from the AFME facebook for asking awkward questions, and even for criticising Lightning Process.
 
Last edited:
@Sasha, I wasn’t thinking of the comment you shared again. I hadn’t noticed it until you shared it again. It was the comment on the first page, “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.”

I have no idea why they as an organisation chose the path they did back in the 90’s, but I stand by believing they have not put patients best interests at the heart of what they do. If they did they would have listened a long time ago to patients sharing for years the psycho social approach which Afme supported was a disaster for patients.

I don’t believe this is now the past and they are changing. If they were, they would now answer questions about the current Harrison/Edwards paper and give more information about it. Some of Harrison’s work may be ok, I don’t know, but there are serious questions to be asked about this paper and which patients are getting no answer to. They would be vocal about the new harm ME patients face by the current NHS MUS roll out which lists ME/CFS as a MUS condition and campaign against it.
 
Docsimsim said:
Trish for me, it’s the principle that matters.
Click to expand...
And for me too. Of all the many things that has totally screwed things for PwME it is manipulative censorship. SMC for instance, and deeply biased journals. If we censor who can join here, then we'd better change our name, because it most surely will not be promoting the science for ME, but instead will promote the very bias and prejudice we fight against.
 
Barry said:
And for me too. Of all the many things that has totally screwed things for PwME it is manipulative censorship. SMC for instance, and deeply biased journals. If we censor who can join here, then we'd better change our name, because it most surely will not be promoting the science for ME, but instead will promote the very bias and prejudice we fight against.
Click to expand...
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
NelliePledge said:
I don’t object to @AFME being here if they follow the lead of other organisations MEA, Biobank etc and actively engage with the forum. Otherwise what’s the point of them being here and they might as well end their “presence”.
Click to expand...
very good point. It’s against the ethos of such a group just to join as a formality. Or to just use it as another platform to selfpromote.
 
Docsimsim said:
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.
Click to expand...

They have no presence here. They have made no attempt to have a presence apart from joining.
Jonathan Edwards said:
Having an avatar here does not put a feather in anyone's cap,
Click to expand...
Not even a bird avatar?


anniekim said:
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.
Click to expand...

We also registered as a stakeholder with NICE. We do hope to have an 'official status' at some point but just for the purpose of a forum to discuss science around ME and support patients through a forum. We have no intent of becoming a support group such as the MEA or AfME. I think as an organisation who aim to promote discussion of science it makes sense to put a label on submissions such as the NIH ones where people have got together and given a view based on such discussions.
 
Nancy Blackett said:
From experience as a former afme charity member, and former facebook member, long banned, I got the strong impression that afme operate a kind of 'Tyranny of niceness'. It was intensly frustrating, and isolating to be infantilised and patronised with nicey sympathy as a severely sick member nearly 20 years ago. When what I needed was medical rights advocacy, seriously.

After 2 or three years I left the charity as a member, having spoken with all the staff and the CEO, I could see no point in remaining as afme did not represent me or any of my needs. Everything seemed wrong, I thought surely I cannot be the only person to think so, and of course I wasnt.

Years later, long after after I got online and very informed, I joined the facebook along with other advocates and posted important research and documents. A number of the fb members started getting politically clued up, and now do advocacy too. But most have since been banned from the facebook for asking awkward questions, and even for criticising Lightning Process.
Click to expand...
Yep. Everything I read from people who really know @Action for M.E. does convince me there is something really wrong with them. Which makes me ponder why they might have joined here. Well, there have been all sorts of possibilities mooted, but I have another one, given their dormant membership. So let's suppose we got draconian, and kicked them out for no reason other than we don't like them, don't agree with them. That would be the best PR coup they hope for, and you can bet they would suddenly start talking about S4ME. They could legitimately crucify us on social media, for clearly showing us to not practice what we preach.
 
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. Maybe just ask them why they have joined and have they read this thread? My guess is you’ll never hear a word from them. Their interactions with patients is very one sided and totally controlled. They cut and paste stock answers which are none answers. It’s so disingenuous
Adrian said:
They have no presence here. They have made no attempt to have a presence apart from joining.

Not even a bird avatar?




We also registered as a stakeholder with NICE. We do hope to have an 'official status' at some point but just for the purpose of a forum to discuss science around ME and support patients through a forum. We have no intent of becoming a support group such as the MEA or AfME. I think as an organisation who aim to promote discussion of science it makes sense to put a label on submissions such as the NIH ones where people have got together and given a view based on such discussions.
Click to expand...
 
Last edited:
Adrian said:
My guess is they wanted to look at the DWP correspondence that was posted here. You have to be a member to look at attachments and JohnTheJack tweeted that they were mentioned in them.
Click to expand...
In which case it might suggest they are feeling a little uneasy/queasy and need reminding how much evidence there might be of their involvement. Maybe even more so having done their reading?

The only thing that doesn't quite ring true for me with that theory, is why did they not therefore use an alias? Why own up to who they are? Unless they are not who their membership name suggests?

Are we really sure it is AfME here under the @Action for M.E. banner? Or could it be a BPS'ite just trying to stir us up? (Certainly working if it is). Have we taken steps to confirm this really is AfME? Have/could we actually ask them?
 
You must log in or register to reply here.
Back
Top Bottom