Action for ME has joined S4ME

Liv aka Mrs Sowester said:
Wow! Now that's news that definitely calls for bunting, cakes and quite possibly street parties!
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I see, is this already in the public domain? I’m not sure I was aware of that.
Also what if the PACE, CBT/GET psychs are simply being replaced with the MUS/FD neuro-psychs? Same substance different style/semantics. Having a ‘neuro’ in front of ‘psychiatarist’ doesn’t negate the fact that they’re still a psychiatrist. Simon W has been calling for psychiatry and neurology to become a combined discipline, thrse are choppy waters. ME is getting lumped in with other MUS illnesses and thrown to the neuro psychs. This isn’t happening with other neuro-immune illnesses is it? As far as I know those with MS or Parkinson’s or MND get properly cared for by neurologists.
 
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Jonathan Edwards said:
Yes. Something has happened. The Science Media Centre has been asked to leave the CMRC board. Others have left of their own accord.
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Oh i see, is this already in the public domain? I’m not sure I was aware of that.
Also what if the PACE, CBT/GET psychs are simply being replaced with the MUS/FD neuro-psychs? Same substance different style/semantics. Having a neuro in front of psych doesn’t negate the fact that they’re still psychs, or does it? Simon W has been calling for psychiatry and neurology to become a combined discipline. ME is getting lumped in with other MUS illnesses and thrown to the neuro psychs. This isn’t happening with other neuro-immune illnesses is it? As far as I know those with MS orParkinson’s or MND get properly cared for by neurologists.
 
Adrian said:
Best post is @Lucibee's summary of the 2004 docs
https://www.s4me.info/threads/correspondence-from-the-dwp-for-2004.2771/#post-51130

Also 2003 docs
https://www.s4me.info/threads/correspondence-from-the-dwp-for-2003.2682/
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Tx for speedy posting. I’m still curious why they wanted to see this correspondence. Surely they would be aware that they were part of the PACE study themselves and in fact instrumental in patient recruitment etc. They’ve enabled DWP to shaft ME patients
 
Docsimsim said:
Tx for speedy posting. I’m still curious why they wanted to see this correspondence. Surely they would be aware that they were part of the PACE study themselves and in fact instrumental in patient recruitment etc. They’ve enabled DWP to shaft ME patients
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I would guess they wanted to see what it said about them and whether its bad. The correspondence is mainly administrative.

I am guessing of course.
 
Sasha said:
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. :)
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By Post you mean self promote? Anyway according to other members above it looks like they only joined to gain access to letters someone had written to the DWP in the past 14 years which includes the time they were helping DWP set up the PACE trial!
 
Docsimsim said:
By Post you mean self promote?
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Not necessarily - I don't want to prejudge what they're doing. They seem to have been making some shuffling changes in recent years and I'm wondering if that's a process that's continuing.

The CAA were poorly thought of for years in a way not dissimilar to AfME and then suddenly, voila! The Solve ME/CFS Initiative, which is great.

Anyway according to other members above it looks like they only joined to gain access to letters someone had written to the DWP in the past 14 years which includes the time they were helping DWP set up the PACE trial!
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I think that's a bit of a conclusion to jump to. Joining under their own name seems a bit overkill just to look at some files. You may be right, but I'm not convinced that that's all there is to it.
 
Anyhow, on the whole AfME thing: this is an open forum and even the members only posts are essentially public - I'm reminded of this cartoon. I would be very uncomfortable with declaring people/organisations persona non grata without a demonstration of their actually breaking forum rules; indeed, given that the scientific process is meant to be open to all (even if it hasn't worked like that in practice, what with needing to go to information tribunals etc) I don't think a forum that sells itself on being a place of science would go hand-in-hand with a banning list for those who aren't judged to be ideologically pure enough.
 
Sasha said:
Not necessarily - I don't want to prejudge what they're doing. They seem to have been making some shuffling changes in recent years and I'm wondering if that's a process that's continuing.

The CAA were poorly thought of for years in a way not dissimilar to AfME and then suddenly, voila! The Solve ME/CFS Initiative, which is great.



I think that's a bit of a conclusion to jump to. Joining under their own name seems a bit overkill just to look at some files. You may be right, but I'm not convinced that that's all there is to it.
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But I know many US sufferers who tell me that solve cfs is just as bad if not worse than Afme. We are decades down the line and at this stage we should not have such low expectations of our advocacy groups. They exist coz of us patients yet they don’t act in our best interest, far from it. They impede progress by pussy footing around the fatigue/ME conflation. Do we want another 30 years of fatigue research being passed as ME research?
 
Barry said:
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.
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Did I say we get drochonian and expel them? No. I mentioned a carefully/calmly worded public statement reiterating what the ethos of this group is and why its members are uncomfortable with Afme being the usual non contributing silent member. I bet they took what they wanted (the DWP correspondence) and went away without a backward glance. That’s what they do, use patient forums when it suits them whilst throwing us under the SMILE, PACE, FITNET, etc bus. The new bus is the functional disorders/MUS illnesses and the neuro psychs are the new kids on the block they’ll fraternise with
 
Jonathan Edwards said:
Yes. Something has happened. The Science Media Centre has been asked to leave the CMRC board. Others have left of their own accord.
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Is someone listening to us?

BurnA said:
If the CMRC are serious they need to admit the failings of the past, there needs to be a complete clean sweep of the old guard. They need to form a clear entity which takes a position against poor quality research, and they need to ditch the SMC.
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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.
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Well said. They infantilise and patronise patients, not only refuse to listen to us but stop us from using their forums when they present the carefully orchestrated message that ‘all our patients are happy with us’. Yes coz anyone not going along with their cosy little story is banished from public and if we try to talk to them privately they are rude and hostile. As I said it’s like North Korea where they only show images of happy compliant citizens. It’s power by any means while young people rot in bed for decades or die all under their watch/‘leadership’. If they were a consumer organisation they’d have gone bust ages ago due to incompetence if not malpractice
 
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To post on topic, I have no opinion, and don't see why I would have, it's not an issue I know a lot about. I am against simply banning people or organisations simply coz I, or someone else, don't/doesn't like them. There are, probably, rules, that specify what people, or organisations, can be banned for, this list of violations probably doesn't, and shouldn't, include not being liked much, no matter the history elsewhere.

If they break a rule that warrants it, then........it's time for admin/mods to decide how to handle it, but until then IMO there is nothing to discuss, by anyone.
 
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Sly Saint said:
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?
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I’ve met the creator of that film, and cannot disagree with your observation.
 
Valentijn said:
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?
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Perhaps i have not explained my position properly, i have not said to ban them or anyone else.

Jonathan Edwards said:
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.
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Giving access to private information to people who could twist anything they can to use against you is like a fox guarding a hen house.
I am not saying don't be nice to your adversary, i am saying don't give them more weapons to use against you. You should always try to make peace with your opponent but you should not undermine yourself in the process. Trust is earned, not given away, at least in my books.

There is a thread on here i didn't read about the DWP looking for CCTV footage of people with disabilities, i have not read it but i assume all the replies think this is a great idea and we should be happy about it. Can anyone confirm this is the case?

A story i heard about was someone on disability because of a back injury, they could not typically walk for more then 5 mins. Once they had a good day and walked ten minutes straight, their benefits were cut off because the insurance company had been following them whenever they left the hosue. They were in pain for a week afterwards but the fact they once made 10 minutes meant no more support despite the doctors evidence, the x-rays, the past and future planned surgeries...
Imagine going hungry and homeless because you had a good day and walked for 10 minutes.
In a public instance someone was on medical leave for depression or something, they posted a photo on facebook of being at the beach, their benefits were cut off (its was on the news years ago).
If i claim to be 80% housebound but i go out 3 times in a 10 day period, say the doctor, the grocery store and the corner store. I'm now a liar because it may average 80% so lets say from the 1st to 9th i went to the grocery store but the 10th to 18th i went to the doctor and grocery store. I'm actually more then 80% housebound on average but i went to the corner store on the 5th, doctor on the 9th and grocery on the 14th. Bye bye benefits.


Docsimsim said:
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
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Indeed :emoji_face_palm:

Barry said:
@Action for M.E. are actually giving an awful lot away about themselves. They are clearly capableof 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.
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Why is the moderators forum not public?

Docsimsim said:
Trish for me, it’s the principle that matters. Ok S4ME didn’t court them but there are those here who believe that Afme joining here is somehow a positive signal.

I’m afraid it’s not. It’s just an often used tactic of theirs to give the impression of engaging with patients while in reality they have thrown us (and continue to do so) under the bus enough times for us to have woken up to the fact that in their present form they are unredemeeble.
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Indeed, the way i see it (and most disagree) is if they have not changed how is giving them more ammunition to use against us going to benefit us?
 
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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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