Action for ME has joined S4ME

Nancy Blackett said:
Well said Alvin! Very well written. And so very astute !!!!

We, ME Sufferers, are actually persecuted citizens! But we mostly dont choose to identify as victims (although we are). We seek to educate, and advocate. Unless we are so damn sick all we can say is "Help".

The fact is.... that when Austerity Policy came in with the Tories in 2010..... it was ME Sufferers/Advocates who were the earliest to inform the UK Disability Anti Cuts Activism orgs..... it was ME sufferers who informed the Black Triangle Campaign and DPAC (Disabled People Against Cuts) ..... about the collaboration of the UK Government with UNUM, the long term intention to disappear UK Sickness/disability Benefits, to be replaced by Permanent Health insurance (sickness/disability insurance).. .... because if accessing disability benefits becomes so brutal .... the general public will get the message that they will have to buy disability insurance..... or otherwise be fucked over as the current sick snd disabled citizens of the UK are being. So many sick and disabled peeps have been deprived of their benefits and have died as a result.

But it was ME Advocates who first worked out the collusion between the insurance industry (1994, Peter Lilly, UNUM, Mansel Aylward) and the PACE Trial, and the UK Austerity Policy.

Later Prominent Disability Rights orgs, social rights orgs, recognise the overarching Neoliberal agenda in disappearing Disability benefits in the UK, and the role of the PACE Trial in trying to accomplish that.

http://www.centreforwelfarereform.org/library/by-az/in-the-expectation-of-recovery.html


AFME has yet to acknowlege or apologise for its part in such a wide reaching, and destructive piece of research as PACE.

No one expects the Current AFME CEO, or Current Trustees, to admit it was them who agreed to collaborate with PACE. Because its clear that the current CEO, and MOST of the current Trustees were not in place in 2002/3/4 ....

But.... if the current AFME CEO and trustees do not admit that AFME, as the Charity, got it wrong about PACE..... how can we possibly trust the current CEO and Trustees to take responsibility for the longer term effects of their current decisions .... their current research affiliations, their current co operation with the NHS 'CFS' policy, their current influences in our treatment in the NHS. How can we possibly trust them?
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Can A4ME member @Action for ME please respond to my Post xx
 
Kina said:
If you have an issue with moderation, post on the moddie forum.
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I do not have any personal issue with it, i am saying my counter arguments and examples are ignored.

Private means not indexed by google. There is no such thing as ‘private’ on the internet. The only safeguard is being aware that what you are posting under the name of private isn’t actually private.
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I agree with you here, my point is that i presented examples that are ignored.

Even if you have a super private forum, it only takes one member to post stuff publicly on the internet. Nobody can control that.
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Yet you have other private forums, if anyone can post it publicly then why bother with them at all. Again i'm not saying you should make them public, otherwise you already would. I am saying i agree with you having them and that you should apply a similar standard to members only threads.

How is this all relevant. You are speaking about other stuff that has nothing to do with this thread. I really don’t know where you have been coming from on this thread. It seems many are using it for random thoughts about this and that. It’s not helping and it’s really really difficult and stressful on the moderators.
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Where i am coming from is that information that is a bit more personal then public posts being picked apart by an organization that maligns us is something to consider. I do apologize for making anything more difficult or stressful, it is most certainly not my intention.

In the end we are going in circles which i don't like doing, most forum members want a hostile organization to have access to more personal threads, if thats your position i will accept it (to cut your stress) and stop explaining why its problematic since i have already covered it, my point is only that no one should kid themselves on why its problematic
 
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This forum is public. The recent judgment re PACE evidence I saw (would Post reference from the link/tweet but back in the midst of timeline), but was made it clear that forums are being joined and observed by people the forum members are critiquing & trying to use as evidence of ‘abuse’ gathered by those who want to use it as eg reason to obstruct access to data.

I see no problem with deeply critical & strongly worded & skeptics posts. But wise to beware that all Forums can be joined & what is here is public not private.
 
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There are no plans to close down this thread. The only reason why it would be closed would be if multiple and persistent rule breaches were occuring which made it impossible or too onerous to moderate. It has been lively and it has kept moderation busy. But it is an important issue upon which many members have strong feelings and opinions. Those opinions should be expressed and heard.

And they are being heard. The committee is following and discussing this issue. Like everyone here, they are ill and busy people trying to juggle multiple tasks and roles, on and off the forum, so please be patient. Hopefully as a forum we can soon clarify our position on this issue. Given the strong opinions expressed on this thread, it may not be a position that satisfies everybody (if anyone does have a position that satisfies everybody please PM the committee as a matter of urgency).
 
Alvin said:
Its interesting that we cry no censorship yet being asked to edit our words and having private forums that we can't access and even locking threads is not censorship and ignored. I'm not arguing that we should have access to the moderators forum or other private forums or even that locking threads should not be allowed because its akin to censorship but its interesting that having a vetting process for private posts is censorship but having private forums is given a blank cheque.
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Can I point out that S4ME has never claimed to have "no censorship". We will censor rudeness, personal attacks, trolling behaviour, as per the rules. We will censor "ideas" if those ideas are racist, discriminatory, or they involve negatively characterising another member (e.g. I think you're an idiot, a whiner, etc.).

That's why S4ME is generally a nicer place to interact than reddit. You can find out more information at our rules. https://www.s4me.info/threads/forum-rules.301/

What we DO aim to do is allow members as much freedom as possible to express their views on any matter that is important to PwMEs, including dissenting views.
 
When we started out afresh here in the embryonic stages of our shiny new forum, there was a fundamental tenet that I'm sure we all agreed was part of our core values: That supporting and advancing science for ME, means being prepared to engage with all sides of a scientific debate, because without that it is, by definition, not true scientific debate. I still fully endorse that, as I believe we all did then.

I belatedly realise however, that the statement of our core values does not make that crystal clear, and so people will not necessarily realise they are agreeing to this when joining. This is not a criticism - it's impossible to get everything 100% up front. But I'm sure this was fundamental to the principles we agreed for S4ME in its creation.
 
Barry said:
I belatedly realise however, that the statement of our core values do not make that crystal clear, and so people will not necessarily realise they are agreeing to this when joining. This is not a criticism - it's impossible to get everything 100% up front. But I'm sure this was fundamental to the principles we agreed for S4ME in its creation.
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I think this is a good point, @Barry. That core value could be emphasised much more.
 
Woolie said:
Can I point out that S4ME has never claimed to have "no censorship". We will censor rudeness, personal attacks, trolling behaviour, as per the rules. We will censor "ideas" if those ideas are racist, discriminatory, or they involve negatively characterising another member (e.g. I think you're an idiot, a whiner, etc.).

That's why S4ME is generally a nicer place to interact than reddit. You can find out more information at our rules. https://www.s4me.info/threads/forum-rules.301/

What we DO aim to do is allow members as much freedom as possible to express their views on any matter that is important to PwMEs, including dissenting views.
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I agreed to stop making points to reduce stress, so you will have to decide should i be replying or not? If yes then i don't want to be put on moderation later or hear complaints about me causing stress or headaches or problems regarding this issue. If no then i suggest dropping this.
 
Jonathan Edwards said:
Where was that. If the CEO was referring to me, which is not unlikely, then I should attend to it. Two to three months ago things were different but in this example that may not be relevant.



Yes, but that is not down to AfME. It is down to the stupidity and self-interest of medical colleagues.

MUS is a wider arena, but I am very much setting my sights on that too now.
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No it was on their FB Page Jonathon (would take me a while to find it now) and it was adressed generally to all patients who had scrutinised them about funding Crawley’s research in the past and possibly vicariously in the future. She called the inquiries ‘vexatious’ and the patients ‘time wasters’.

Also Afme have for decades now promoted behavioural therapies & continue to do so (including quackery such as LP) which are devised by the said medical colleagues, that’s a fact don’t you agree Johnathon?
If our national patient organisations offer no resisistence or attempt to change the status quo and instead marginalise patients who ask for action, then what’s the point of such organisations existing? They are more of a hindrance than help, by giving the appearance of patient participation/consent in its absence. They simply become enablers for the outdated BPS school.
* Apologies but I have to rest now as have made myself much iller by pushing to comment and the thread seems to be going round in circles.
 
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Alvin said:
I agreed to stop making points to reduce stress, so you will have to decide should i be replying or not? If yes then i don't want to be put on moderation later or hear complaints about me causing stress or headaches or problems regarding this issue. If no then i suggest dropping this.
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Sorry, @Alvin, this was not meant as a criticism of you at all. I thought it worth pointing out to all readers of the thread.
 
Some more thoughts from me ...

It was suggested that there were private subforums on PR and I went to see what they look like but couldn't find any. There are private groups though. Unlike conversations (PMs), members can start their own private threads there. 'Private' for a group means that the owner of the group decides who is allowed to join, and who - not.

Surely it is a bad idea to change the status of existing 'members only' threads. Instead, a new 'private' subforum can be created. My personal opinion is this is unnecessary, but anyway ... my point is on the definition of 'private'. So, 2 variants:

1) Invite only - something like the current German language forums. The moderators decide who can join and who - not - but under what criteria, that is unclear. The only reason that the german subforums are private is because they are not moderated, and not because they contain some private information.

2) 'Established members only' subforums. A person should have been a member for X amount of time and posted Y number of posts before being allowed to join. Surely, any member (including A4ME) can at some point fulfill these requirements and join the forum.

My point is, when you want 'private' subforums, you should really define what 'private' means. Do you want to decide by yourself who is to join the 'private' subforum / group or do you wish that members join under certain conditions (and what?).
 
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svetoslav80 said:
It was suggested that there were private subforums on PR and I went to see what they look like but couldn't find any. There are private groups though. Unlike conversations (PMs), members can start their own private threads there. 'Private' for a group means that the owner of the group decides who is allowed to join, and who - not.
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There were private subforums on PR. There was one so patients of KDM could discuss treatments among themselves without the constant criticisms of his treatments (that could still carried out on the main forums). There were a few different groups working on various projects that had private forums so they could do concentrate on their work without interruption. Most of the private forums were set up because the ‘Groups’ plug-in didn’t give alerts properly and lacked some of the things that they needed.
 
Hello – it’s Clare Ogden here, I’m Head of Communications and Engagement at Action for M.E., and I’m posting on behalf of the charity.

It is our intention to engage with Science for M.E. by contributing to discussion, where we have the resources and capacity to do so, bearing in mind that our focus is primarily on providing information and support services to people affected by M.E. (at least 50% of the charity’s activities are focused on this). I’m posting now and plan to check back later today. My aim is to check in on a regular basis, when I'm in the office.

I understand from reading the discussion here that there are mixed and very strong feelings about Action for M.E. being a member of the forum, and that many of you have questions about the reasons we have joined.

Action for M.E. signed up to become a member of Science for M.E. so that we could hear the views of this community, and understand the issues that are important to its members.
 
Docsimsim said:
No it was on their FB Page Jonathon (would take me a while to find it now) and it was adressed generally to all patients who had scrutinised them about funding Crawley’s research in the past and possibly vicariously in the future. She called the inquiries ‘vexatious’ and the patients ‘time wasters’.
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I've done a search of their page on FB and I can't find it. Are you sure it wasn't a mirror site?
 
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