Action for ME has joined S4ME

What if they joined so they can read member only posts possibly to be used against us at a later date?
Since we are willing to let them do this why do we have member only areas anyways?
 
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large donner said:
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.
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Invisible Woman said:
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.
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Yes, that chimes with me.
 
Alvin said:
I'll bet money they joined so they can read member only posts possibly to be used against us at a later date.
Since we are willing to let them do this why do we have member only areas anyways?
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But as someone else mentioned earlier, AfME board members could just as easily sign up as Joe Smith or Jane Doe and we'd be none the wiser. If they want to read what is being posted here, there is no way to stop them. At least they are being transparent about joining this group.
 
Nancy Blackett said:
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.
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I don't have enough experience of things to know, but I'm guessing you may very well be right. My feeling however is that selective exclusion would be a form of censorship, and bring us down to the level of those whose biases we decry.
 
TigerLilea said:
But as someone else mentioned earlier, AfME board members could just as easily sign up as Joe Smith or Jane Doe and we'd be none the wiser. If they want to read what is being posted here, there is no way to stop them. At least they are being transparent about joining this group.
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As i have mentioned in other threads we should only allow established members to access members only forums and if new members want to become established they can post and tell us about themselves and become active members. This would not be hard to implement though it would add to some moderators load. Also if they fake being ME/CFS patients thats evidence right there that they are being treacherous that works in our favour.
Lets not forget our words have been used to try and discredit us and have have a private forum so people can reveal personal information to members and not broadcast it to the world.
I also find the double standards head scratching, the CBT/GET brigade do their work in secret, try to prevent release of data, don't allow us to work with them, use the courts to try and prevent us getting a hold of public financed data, but we are willing to let them access our personal information that is about our personal lives and is not research or fraud related at all.
 
TigerLilea said:
But as someone else mentioned earlier, AfME board members could just as easily sign up as Joe Smith or Jane Doe and we'd be none the wiser. If they want to read what is being posted here, there is no way to stop them. At least they are being transparent about joining this group.
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Exactly. And who is to say EC or SW etc. are not already here under an alias, too clandestine to own up to who they are? In fact when you think about it, what are the odds at least one of the BPS crew are not here?
 
TiredSam said:
This would exclude the severe and those unable to regularly post, or post at all, for whom this forum might be a lifeline.
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I did not say don't allow patients to join.
I ask again why have members only forums if we don't care that those who want to harm us can easily gain access to our personal information to use against us while they block us from the reality of their work to harm us?
All we are doing is kidding ourselves :emoji_face_palm:

Barry said:
The double standard that would worry me most would be confining our scientific debates with only those we agree with.
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I did not say don't allow them to join. In fact they are not posting anyways so how does letting someone(s) access personal information who does not post but wants to harm us actually benefit us?
They don't extend us the same courtesy.
 
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Just wanted to pass on my own experience with Afme. They blocked me from commenting on their FB Page as soon as I joined FB in 2010 even before I had made any comments on any of their posts!!! When I rang them in 2016 (for the first time in my life) to discuss MEGA and PAG formation, I had a very surreal convo with their PR person whom I didn’t know at all yet she seemed to know me well by name & was hostile & rude to me. It was chilling and sinister. It was as if they they had some sort of secret file on me as an enemy?!!! I know other ME sufferers whom have been treated in this way by them and blocked on fb/Twitter simply for asking questions on Afme’s involvement in PACE and their decades long collusion with the BPS school of ME and the psych lobby. If they don’t even have the integrity to admit that they have caused harm in the past how can we trust them not to do more harm in the future. “Those who don’t learn from history are doomed to repeat it”.

On the whole I just wanted to let others here know how Afme shut all forms of debate & you are being very generous here giving them yet another platform when they already have so much power with impunity and allow no platform for ME patients who have issues with their conduct.

They censor/silence all debate & abuse their power. Personally I’m saying this coz I have nothing to lose as they already seem to have me on their black list.

What kind of patient organisation would black list and silence its most severe patients when we already have no voice?

I’m also saying that this is no longer a safe space for debate with Afme lurking in the background. They won’t listen to the science and be educated, they will simply collect info on dissenting patients most of whom are in the severe category of ME anyway so I don’t know why the fear us so much? Is it because we are holding up a mirror to them and asking them to re examine their actions and they don’t want to under any circumstances do this?
 
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I can't understand this whole discussion. Everyone is allowed to join the forum. (Even Wessely) Also, I don't want to take moderators role but rule #8 forbids multiple accounts per member, not vice versa, so it should be ok if multiple members post through the same account (I think?).
 
Alvin said:
Since we are willing to let them do this why do we have member only areas anyways?
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It's really just to avoid things being indexed on search sites, stuff like that. No-one should think that the member only areas are remotely private. I'm sure that those opposed to patient advocacy efforts were members on PR, and it wouldn't surprise me if some were now here too.

Alvin said:
I also find the double standards head scratching
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One side pursues open discussion and debate, the other runs from it. Which side do you think will end up stronger in the long-run?
 
Esther12 said:
It's really just to avoid things being indexed on search sites, stuff like that. No-one should think that the member only areas are remotely private. I'm sure that those opposed to patient advocacy efforts were members on PR, and it wouldn't surprise me if some were now here too.
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It would not surprise me either, it only strengthens my arguments

One side pursues open discussion and debate, the other runs from it. Which side do you think will end up stronger in the long-run?
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The side that makes smart decisions and knows how to fight for its interests.
Lets not forget smears, lies, doctored data and alternative facts are extremely effective.
If you want to defeat a more powerful adversary you don't give them free ammunition. I assume that parallels some statement from the Art of War.
 
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Alvin said:
They don't extend us the same courtesy.
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And we shouldn't sink to the level of silencing dissenting voices. AfME might be a threat to ME patients through their habit of supporting awful research and quacks, if they haven't learned anything from it, but their presence here is no threat at all. Even if they say something offensive or disagreeable, we are very well equipped to respond and point out any errors as well as explaining why any such statements are erroneous.

I can easily think of many ways to support my arguments regarding every issue where I might disagree with them. I would be far less confident of my ability to defend a blanket ban of AfME, or anyone else who is following the same rules as the rest of us. Censorship is generally indefensible - why attempt to defend the indefensible when you can simply avoid doing something ultimately indefensible in the first place?
 
We have no particular rules as to who can become a member we only bad obvious spammers who are flagged as such on blacklisting sites on initial entry. We do have rules that members must abide by. I think we would be concerned if people were misusing a name (e.g. if someone else registered an organisation (or individuals name) to pretend to be them).

If action for ME wanted to just trawl for people/material to use against us then they could easily do that using an anonymous account (and I think it would be very hard to stop). We should remember that QMUL did do this on a different forum and they used this against us (as a community) in arguing what was posted meant that information should not be released. But that was QMUL not AfME.

In truth the members only sections are only protecting information from being searchable on google. Since we don't have any member vetting process. I think to implement any form of member vetting would exclude people who are isolated and in need of help/a community and hence be a very bad idea.

Many organisations have 'organisation accounts' for example on things like twitter. Its up to them how they control them.

I don't think AfME will become active members of the forum or even look at it. They have not done that else where beyond a brief attempt to engage on the other place but they gave up when difficult questions came along.
 
Alvin said:
If you want to defeat a more powerful adversary you don't give them free ammunition. I assume that parallels some statement from the Art of War.
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In this sort of war you do. In science in general you do. I think it may have parallels with Mahatma Ghandi's teachings. If your enemy claims ownership of something on the grounds of truth or moral high ground, as here and in India, (and in contrast to Mr Trump who makes no pretence) then if you throw real truth and morality at them they can only use it to shoot themselves in the foot. The BPS people have done that persistently with their attacks on patients and with the devising of ever more ludicrous trials. They are now paying the price - ignominy.

AfME may have been misguided. Even misguided people at some point have to give up when the ship has sunk.
 
I think, if someone is going to join under the name and logo of a real organization, there should at least be some requirement that they be able to prove that they do indeed represent that organization. Do we want some random actor to be able to join and call himself "The National Institute of Health" just because he can upload an avatar?
www.nih.gov


[The views expressed by Forbin are his own and do not necessarily represent the views of Colossus, Guardian or World Control.]
 
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