Action for ME has joined S4ME

Agree, just like Emily Taylor did. Emily used her real name and used the Solve logo for her Avatar. I feel this is a fair and resonable request for an organization that wants to join us. If the organization has nothing to hide, then I don’t see why this is a big ask.

 

They are one of its sponsors! And milking it. They only 'join in' patient lead advocacy when it is in their interest and spin everything as though they were the ones who 'made it happen' (eg recent change of heart by NICE to review the guidelines). They did not support #millionsmissing and yet used the tag to further their fund raising.

Thus in any future advocacy 'successes' or initiatives that S4ME might be involved in AfME will be able to claim they are a member or pick up the 'idea' and spin it to their advantage..........like they always do.

eta: have they retweeted anything from S4ME or mentioned on their FB page that they have joined here, or for that matter that they have been members of PR for some years?

 

I'm also all for AfME being here. The fact that they've registered in their own name suggests to me that one day, they intend to talk to us. If they'd just wanted to lurk, they didn't have to use the AfME name.

We have a lot to say to them. Thus far, they don't seem to have heard a lot of it, but if they're going to engage with us on the forum, great. The one thing we've not had with any of the people who've been pushing the BPS agenda is a responsive debate - or an arena in which they will meet with us. And if they fail to engage, well, there they are on the internet, being shown to fail to engage.

Some people are concerned about their privacy but as has been said, even in the members-only forums, this is the internet, and anyone can join here under an assumed name. No one should assume that what they post on the forums is private.

 

Even if it might put other people off from wanting to join?
s4me and a4me.

 

This is a forum, designed for open discussion, and especially about the science. People must make their own choices about whether they're happy being in an open forum.

I don't understand what you mean by this.

 

You can’t educate someone who has no intention of being educated. Any attempts made by patients to ask them pertinent questions is met by one response only: censureship, they block you on their social media. My guess is that they will never comment or read any of those threads anyway. Unless it has something to do with needing cheer leaders for something they want to be congratulated on. It’s all one way: they take but never give.
They have the power and frequently censor patient voices unless it agrees with their agenda (fatigue/ME conflation). Otherwise they come down on you like a ton of bricks and block you. I don’t know where they get the resource es/time to keep tabs on patients so tightly. If only they cared as much about working towards achieving proper biomedical research instead of online surveillance of very ill ME sufferers

 

@Action for M.E. are actually giving an awful lot away about themselves. They are clearly capable of interacting with us (I don't imagine as an organisation they are bedbound and very severe), yet they don't. To me that gives the strongest indication that all the things I hear of them are true. Why would they treat people (we are people aren't we?) that way? It's just ... weird.

But to reiterate, I believe anyone should be allowed here providing the abide by they rules. If we seriously engaged in the very censorship we so detest in others, that would be the one thing that would make me walk.

 

Who would have guessed that afme possess such tactical nous. Round one to them.

 

That's my concern about them being here, that they will use their membership here as a vehicle to ligitimise themselves amongst new patients, journalists and researchers whilst still carrying on as usual in cahoots with Esther Crawley and the BPS brigade.

If they have joined to use this forum to bolster their membership and reputation then I'm not happy at that.

This forum is about scientific research, whereas AfME has enabled the antithesis of science through it's part in PACE and Esther Crawley's research, all of which has caused and continues to cause real harm to PWME.

 

In addition to this, we can also look at it from the point of view that a forum that has only been open for 4.5 months has attracted the attention of even insular organisations like AfME. Either they see us as a threat, want to join in with us or wan to try to take advantage of our success - any of which can only be a good thing.

 

The new Chairman and a couple of other Trustees seem very reasonable. I do not know how long they have been in post, except for the Chair. who was "appointed" at AGM in Autumn 2016.

I agree that dialogue is good, and hope they do join in. I realise that for some, past actions are still too painful for this and there is much they could do to demonstrate solidarity with the ME community.

I should probably be a bit more guarded on Members only posts, but I did think Tired Sam was giving prospective members the once over, when they applied.
Well not really, but I should realise that most posts etc can be accessed by those who are bothered and computer literate.

 

"Core Purpose and Values:

Science for ME is an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us."

 

I'd forgotten that.

Well, AfME claim to to support us, and they probably believe that they do. Let's by all means have them here to debate that.

As PWME, we have serious work to do. There's a whole edifice of BPS nonsense that has done, and continues to do terrible, terrible damage. We need to address it, and we need to engage with the people who are perpetrating it as much as we can, and tackle their ideas with them in a discussion.

Usually they seem afraid to engage, and hide from us. They stop people from posting message of people critical of them on their own turf. AfME, for some reason, has come onto our turf, under their own flag, not hiding. So far they've been silent but I hope that will change. I see no point in them creating an account under their own name if they intended to remain silent in the long term.

I think it's going to be interesting and I'm looking forward to hearing what they have to say.

 

Aside from having Afme as a member here, I truly do not believe Afme since the 1990’s when they decided to hitch their wagon to the bps lot have they shown they wish to help ME patients. If they did, they would have a long time ago listened to the chorus of voices from people with ME saying the psychosocial theory of ME was false and harmful and Afme withdrawn their support for the bps proponents. They didn’t.

Last week it was announced Harrison has joined the CMRC board. Harrison is as has been discussed here a co author of a recent paper that has just come out which theorises CFS is a functional disorder and shares the same brain processes as functional movement disorder and non epileptic disorder. The paper talks about successful treatment given to people from these 3 groups, yet gives no details what this treatment is. It may well be talking therapy. Harrison may or may not be ok alone (have been watching his YouTube videos on ME), but this paper has concerned many of us. People raised questions about the Edwards/Harrison paper on the Afme post announcing the new direction of CMRC. They pointed out Afme on their Facebook page in 2015 told members that the grant said the CFS part was nothing to do with the 2 functional disorders projects which made up the £600,000 grant for the 3 projects altogether. This paper shows that is not true. Afme have not responded to people’s questions, deafening silence.

So even now Afme still show no willingness to discuss and debate with its members. I highly doubt,as others have said on here, Afme will actively engage in debate here - they never do with ME patients - unless it suits them to champion some project of theirs with little two way dialogue.

Initially, I thought well perhaps there is a point that Afme could join using a pseudonym but the observation above could be how Afme joining here will be used to their advantage, not patients. I think at least S4ME should be aware of this and consider is traffic potentially brought here from Afme joining here worth it.

 

There is no such thing as privacy where the internet is concerned - even in 'member's only' sections. Unless you are using your real life name, I'm not sure what everyone is so worried about.