Action for ME has joined S4ME

It might have been deleted. It was about 6 months ago I think. Let me see if I can find it, wh

That might be because we are blocked from their FB? I distinctly remember the terms ‘vexatious’ and ‘time wasting’ being used. Maybe it was later deleted or the thread closed/deleted? @Lucibee

 

Hello there. May I ask if as you say you want to hear the views of the patient community, why you block people from your social media when they express their views or ask any questions? I’ve seen it happen several times in the past week alone on twitter, with various patients mentioning your blocking. I know tens of fellow severe ME sufferers who have been blocked from your fb for a long while now.

I can’t comprehend why a patient organisation would marginalise and silence the very patients it claims to be representing?!

 

It might only be on the desktop version. There's a search box on the "Posts" page of most Pages. Otherwise there's graph search - but it's fairly inefficient.

 

I suspect I'm unable to access this because I was banned a good few years ago now. Yes.. a patient of almost 50 years suffering with this disease banned by the charity that has my disease in its name. Not great is it?

 

I think those of us who are banned from their page don’t have access to this search option?

 

@Docsimsim, I have looked on Afme under my mum’s account who is not banned (they banned me too for some very innocuous comment I made a couple of years back) and I can see no search option.

 

I must have the *special* desktop version then! (it won't work on tablet)

 

@Action for M.E. - Welcome to the forum. As you've said, a lot of people have a lot of issues that they'd like to raise with you. I'm glad that you're willing to engage

I wonder if anyone here would be willing to collate a list of questions, to be sure that key questions don't get missed? There are 11 pages of posts already.

 

From what I have seen I agree that AfME appear to have supported behavioural therapies right through to now.

National patient organisations are always a very mixed bag. For any particular illness there are usually one or two organisations being counterproductive in one way or another. I entirely agree that AfME seem to have got various things wrong up until now. I see that as all the more reason for us to allow them to hear concerns on the forum.

At the time of the Tribunal for the QMUL appeal against Alem Matthees's request under FOI for PACE data I submitted a supporting document as a member of the board of directors of Phoenix Rising. Patient comments on Phoenix Rising had been given as examples of malicious activism. The Information Officer agreed with me that there was no evidence for this. Nothing malicious has been said yet here, despite people making clear they are fed up with AfME, and why.

I am familiar with what happens when opinion changes within a scientific discipline after twenty or more years of obstruction. I am pretty convinced we are past the tipping point for change in ME now. The next hurdle is going to be MUS in general but if the BPS model for ME is trashed that will help.

 

Thank you @TiredSam and others for your welcome!

I’m going to answer a couple of this thread’s most recent questions. Plus I’m also taking a look at other posts Action for M.E. has been tagged in.

Happy to explain our social media moderation process.

We do this in line with our website terms and conditions, which we linked to from the “About us” section in our Facebook page.

These are quite long and cover a number of different areas, but the section relating to how we moderate posts essentially asks users to:

• post messages in a way that is respectful of other people.
• not post any material that is defamatory, obscene, indecent, lewd, pornographic, violent, abusive, insulting, threatening, harassing, harmful, obscene, profane, blasphemous, sexually oriented, racially offensive or discriminatory or which might incite people to commit any crime or is otherwise unlawful or illegal.
• not make personal attacks or bullying of any kind, be it directed at other users, or any person with M.E., carer or professional, including any current, former, potential or future Action for M.E. employee, volunteer or trustee.

When considering borderline content, the moderator will weigh the value of freedom of expression against the value of providing other users with a safe environment in which to express their views and the need to safeguard the charity’s online space against legal action. We are guided by the same principles on Twitter.

I’m really keen to find this post, because I know that Sonya would never accuse patients of wasting her time. So something she or any of our team has said has come across in this way, this is something I would address immediately.

By “their own page” do you mean our website, or on social media? I’ve had a look back through our Facebook posts, and found our news update about the SMILE trial, which you can read here. But there’s no posts from Sonya there.

General question - is it helpful for me to add my name at the bottom of each post, so you immediately know it's Clare at Action for M.E.? It's mostly going to be me that contributes on Science for M.E. but there may be occasions when other members of staff do this instead.

 

Ah, I see, I am looking on my tablet.

 

I really hope so and think it’s possible we are, but after so many years of seeing ME minimised and wrongly framed as a behavioural condition I will believe change has truly come about when I see more evidence that it has. I am very grateful for you and the many others that have helped to expose the bad science in the PACE trial and show that the BPS therapies do not work, as of course patients have been saying for years.

I am glad you recognise MUS is our next big hurdle and I agree if the BPS model of ME is well and truly trashed this may help us get the illness away from being labelled a MUS condition. However, as we all know, the IAPT programme in its guide for rolling out MUS services has listed ME/CFS as a MUS condition so we are not there yet.

 

not sure if this shd be new thread but Sonia Chaudhury was on radio Bristol with John Darvall at about 11.09 this morning. Sorry can't find a link to listen again atm.
Talked about her son getting ME and mentioning need for recognition and biomed research.
Wd be good if they are turning around.

 

Starts just after 2:10:00 https://www.bbc.co.uk/programmes/p05y3tpw

 

Hi Clare, if you could that would be much appreciated.

 

Could it have been on the old AYME page? That will have been deleted now they are part of AfME.

 

I cant write much today as symptoms flaring but my own experience and countless others I know were banned from Afme Facebook not under the criteria you listed. The common theme for banning amongst people I know is making a polite criticism of actions by your charity.

You appointed a professional canoeist, Anna Hemmings, as an ambassador for Afme (back in 2013/14 I think) and she was sharing in news stories how she attributed her recovery (don’t think she was ill for long) to reverse therapy and said ME was caused by the body getting stuck on red alert due to stressful emotions. I merely on the Facebook page said that this theory of ME had not been proved and I didn’t support her as an ambassador when she made such unproven blanket statements about the cause of ME. Afme with no discussion banned me for saying this. I was not impolite just expressing an opinion and the ban felt very heavy handed.

 

I was looking on PC and unable to find it. But of course I am banned.

 

Hi Clare. Someone here mentioned it might have been on the AYME page. I try and see if I can look for it at some point, as i have seriously overdone it (arms are going into paralysis) on this thread and had mentioned last night (above) that I was taking a break from commenting. Also it might have been deleted anyway.

I’m fully certain the V word was used followed by patients being told that their comments were wasting CEO’s time & keeping her from important work!! As usual the tone was patronising/dismissive as if patients holding their representative charity to account were an irritation!

I’m sure you appreciate that some of us here are bedbound and it takes a lot out of us to do all this. So i’m disappointed (but not surprised) that Afme have come back with the usual cut and paste reply where you simply reiterate your banning rules & fudge the issue. One could infer that you use the ‘rules’ too liberally in order to stop any form of debate. Maybe you have a trigger happy person monitoring your social media, or maybe Afme just don’t like criticism of any kind even when these are totally legitimate?

Also, if I remember correctly I hadn’t even commented on your FB Page after I joined in 2010, so your ban on me was actually pre-emptive!!! When others enquired on your fb page on behalf of those banned, Afme’s answer was ‘it is a technical glitch which we are trying to fix’. This was in 2011!!! It was only by chance & when I called your office in 2016 (for the first Time ever) to discuss MEGA PAG matters that it became clear that my ban was more sinister than a ‘technical glitch’. Your PR person (whom i didn’t even know) seemed to know me by name & gave the same stock answer you have given me here but with audible hostility in her voice.
I have heard many accounts of other patients having been treated similarly and blocked over innocuous questions on your social media. I’ve seen someone being told that you won’t allow them to attend the screening of unrest at the royal free hospital because you knew them to ask awkward questions.

I’m sorry but I find your reply here in the same form as the usual non replies from AfME whenever these issues are raised.

Maybe you can substantiate your claim that you are simply following ‘protocol’ in banning patients, by giving (in an honest manner, so no tricks please) us some examples of the comments which get people banned? You can anonymise them. Or alternatively some of those who have been banned can post the innocuous comments which resulted in them being banned.

There are no avenues for patients to have their concerns over Afme (not just how they treat individuals on social media but on the causes of our concerns namely the bigger picture of your policies/actions in general) voiced let alone addressed.
And sadly many of my fellow ME sufferers gave up on trying to engage with you years ago. The common response is ‘what’s the point of bothering with Afme, they never listen, they never change’!


Afme May do well to remember that they are working on behalf of patients not the other way around?

 

Yes that’s one of the possibilities Lucy. It was around the time that Crawley was doing her media blitz (with the backing of SMC) on SMILE & claiming that the lightening process cures ME in kids. Incidentally Afme have not come out and criticised SMILE, Charles Shepherd and MEA did so unequivocally on the radio 4 Today programme at the time. Afme chose to remain silent