Action for ME has joined S4ME

Binkie4 said:
Is anymore known about this?

Also science editors whose information source was the SMC may be short of a contact. Do we know anyone reputable who could fill the gap? Chris Ponting?
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Sadly I suspect just cos SMC aren’t involved in CMRC doesn’t mean they wouldn’t be doing briefings for the BPSers after all none of their research was under the aegis of CMRC.
 
NelliePledge said:
Sadly I suspect just cos SMC aren’t involved in CMRC doesn’t mean they wouldn’t be doing briefings for the BPSers after all none of their research was under the aegis of CMRC.
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Yes. You are right. But surely there has to be a point where science editors realise that they are just peddling old news. There must, mustn't there? It's like the flat earth society retaining its hold.

Do we know any more about SMC being asked to leave CMRC? @Jonathan Edwards
 
Binkie4 said:
Do we know any more about SMC being asked to leave CMRC? @Jonathan Edwards
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No, just that apparently it was not their idea to leave.

The SMC may be in a position to go on peddling poor science but my suspicion is that the gratuitous advertising of this stuff and the vilification of patients is likely to go quiet. Various people have in sequence over the last six months stopped tweeting, putting up slides, writing reviews, or whatever, in this vein. I think the removal of the SMC is symptomatic of a more general appreciation that these people were, in the long run, making fools of themselves. There is a network of old buddies behind the scenes and I suspect a sufficient number of them have now received awkward communications from various people, including David Tuller and myself, for the word to have got around that you cannot fool all of the people all of the time.
 
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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We have tried to put these issues to them for nearly 10 years. As I (and others here have said), they block you as soon as you say anything other than ‘oh Afme are lovely’, if you contact them privately they either ignore it or reply in rude/hostile manner. The CEO uses the vexatious label on anyone who raises these issues. They use the same derogatory labels and smearing the psych lobby have used against patients for decades now. At some point we have to acknowledge that the facts & their behaviour speaks for itself
 
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NelliePledge said:
Sadly I suspect just cos SMC aren’t involved in CMRC doesn’t mean they wouldn’t be doing briefings for the BPSers after all none of their research was under the aegis of CMRC.
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Precisely. It’s just changing names/faces. Not totally convinced that the ethos of CMRC has changed yet? With Holgate in charge the potential for change is restricted
 
Alison Orr said:
I don’t think Eileen Holderman, Gaby Klein or Jeanette Burmeister, all experienced US advocates, would agree with you. Check their tweets. They don’t call it Solve Nothing for no reason.
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This seems to me unwarranted. SolveME/CFS are funding lab based immunology in the UK apart from other biological studies in the US. What else exactly are they supposed to be doing?
 
Docsimsim said:
At some point you have to acknowledge that the facts & their decades of mis conduct speak for themselves and nothing has changed
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You have to consider this in human terms. The people within AfME work within certain constraints. They may have been misguided but probably because they have followed what seemed to be the experts. It looks pretty much as if those experts have finally been shown the door, or slipped out to avoid embarrassment. So everything has changed because the people at AfME will be following a completely different lot of experts.

All this stuff about vexatious patients is finished. If anyone uses that word now they are using it at me and I have a number of options for making sure that does not stick. I very much doubt any of these people will have the temerity to try.
 
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ugh, 6 pages of discord?

> The CAA were poorly thought of for years in a way not dissimilar to AfME and then suddenly, voila!

[real, not rhetorical] is it just myself who missed the full, transparent account of the "suddenly" part? that part of history i think needs to be full and transparent in order to show respect to the m.e. community. is it?
 
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Jonathan Edwards said:
You have to consider this in human terms. The people within AfME work within certain constraints. They may have been misguided but probably because they have followed what seemed to be the experts. It looks pretty much as if those experts have finally been shown the door, or slipped out to avoid embarrassment. So everything has changed because the people at AfME will be following a completely different lot of experts.

All this stuff about vexatious patients is finished. If anyone uses that word now they are using it at me and I have a number of options for making sure that does not stick. I very much doubt any of these people will have the temerity to try.
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Sorry Johnathon but only 2 or 3 months ago, the CEO of Afme called those demanding clarification on their extent of involvement with Crawley’s SMILE, vexatious, on their own page. She accused patients of wasting her time with unimportant matters!!

Also as i said elsewhere on this thread, the fact that the patient smearing/derogatory terminology has become (if it has) less public doesn’t signify that all is well behind closed doors. Medical students are still taught that ME is psychogenic and I have very recently received stock advice sheets from my local ‘CFS clinic’ telling patients that their symptoms will abate if they stopped ‘catastrophising’ about them.
The MUS/FND school of ME which is taking over from the old school BPS cabal is advising that doctors should acknowledge that patients have these symptoms but know that these symptoms are merely functional/psychogenic. Same difference isn’t it? It’s just sugar coating the ‘it’s all in your head’ message with ‘there there, I know you’re suffering, but.. it’s all in your head’ message. Have you seen this letter in Nature? It’s warning that MUS/FND speak shouldn’t be used to perpetuate the same old ineffective behavioural therapies https://www.nature.com/articles/d41586-018-03055-1
 
Docsimsim said:
Sorry Johnathon but only 2 or 3 months ago, the CEO of Afme called those demanding clarification on their extent of involvement with Crawley’s SMILE, vexatious, on their own page. She accused patients of wasting her time with unimportant matters!!

Also as i said elsewhere on this thread, the fact that the patient smearing/derogatory terminology has become (if it has) less public doesn’t signify that all is well behind closed doors. Medical students are still taught that ME is psychogenic and I have very recently received stock advice sheets from my local ‘CFS clinic’ telling patients that their symptoms will abate if they stopped ‘catastrophising’ about them.
The MUS/FND school of ME which is taking over from the old school BPS cabal is advising that doctors should acknowledge that patients have these symptoms but know that these symptoms are merely functional/psychogenic. Same difference isn’t it? It’s just sugar coating the ‘it’s all in your head’ message with ‘there there, I know you’re suffering, but.. it’s all in your head’ message. Have you seen this letter in Nature? It’s warning that MUS/FND speak shouldn’t be used to perpetuate the same old ineffective behavioural therapies https://www.nature.com/articles/d41586-018-03055-1
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The more I hear about @Action for M.E., the more I'd like them to engage here. I suspect they are not very inclined to though, but I really do hope they are reading what's being discussed here.
 
Docsimsim said:
They use the exact same derogatory labels and smearing the psych lobby have used against patients for decades now. At some point we have to acknowledge that the facts & their behaviour speaks for itself
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We can't do that, i don't know why we can't but the popular opinion is that we cannot for some reason :emoji_face_palm:

Jonathan Edwards said:
You have to consider this in human terms. The people within AfME work within certain constraints. They may have been misguided but probably because they have followed what seemed to be the experts. It looks pretty much as if those experts have finally been shown the door, or slipped out to avoid embarrassment. So everything has changed because the people at AfME will be following a completely different lot of experts.

All this stuff about vexatious patients is finished. If anyone uses that word now they are using it at me and I have a number of options for making sure that does not stick. I very much doubt any of these people will have the temerity to try.
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If your correct then it speaks to my post about trust being earned. If they want to earn it back let them apologize for their harms, make amends where possible and chart a new course. I would be extremely happy to see this happen.

Barry said:
The more I hear about @Action for M.E., the more I'd like them to engage here. I suspect they are not very inclined to though, but I really do hope they are reading what's being discussed here.
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Why would they not be, they have changed apparently and are now either on our side or will be when we are nice enough to them, so they will engage us in a positive way :emoji_blush:
 
Docsimsim said:
Sorry Johnathon but only 2 or 3 months ago, the CEO of Afme called those demanding clarification on their extent of involvement with Crawley’s SMILE, vexatious, on their own page. She accused patients of wasting her time with unimportant matters!!
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I think when people are annoyed by others they will call them ‘vexatious’. Just an opinion. It doesn’t mean the people they are referring to are ‘vexatious’.

If somebody feels people are wasting your time, they might say they are wasting their time. It doesn’t mean they are time wasters. Allowing a charity a membership here in no way is saying that the Committees agrees with their actions and words etc, etc. Vexation and time wasting is in the eye of the beholder. Of course, it’s a shit way to treat patients but this thread ain’t going to stop them. It will probably give them more reason to comment on vexatious behaviour but that is their short-coming. It’s a tactic of defense when they can’t actually defend their behaviour.

All of this is just distracting from the science that so many want to discuss. This thread is public and just more fodder for their ‘vexatious’ comments. Why put any credence into what they say? I think you all have had your say. Why not start a thread called ‘Why AfME sucks big time’ and accept the fact that S4ME is not some venue of censorship only allowing the opinion of some but not others.

What has AfME succeeded in doing — setting members against each other, getting members to leave. Just imagine their power now, they join a forum — guaranteed response — argue, threaten to leave. Don’t feed the trolls.

Perhaps somebody — maybe just the Committee only — should invite them into having a moderated conversation about their purpose in joining. I would love to know why they joined.
 
Docsimsim said:
Sorry Johnathon but only 2 or 3 months ago, the CEO of Afme called those demanding clarification on their extent of involvement with Crawley’s SMILE, vexatious, on their own page. She accused patients of wasting her time with unimportant matters!!
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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.

Docsimsim said:
Medical students are still taught that ME is psychogenic and I have very recently received stock advice sheets from my local ‘CFS clinic’ telling patients that their symptoms will abate if they stopped ‘catastrophising’ about them.
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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.
 
Kina said:
I think when people are annoyed by others they will call them ‘vexatious’. Just an opinion. It doesn’t mean the people they are referring to are ‘vexatious’.

If somebody feels people are wasting your time, they might say they are wasting their time. It doesn’t mean they are time wasters. Allowing a charity a membership here in no way is saying that the Committees agrees with their actions and words etc, etc. Vexation and time wasting is in the eye of the beholder. Of course, it’s a shit way to treat patients but this thread ain’t going to stop them. It will probably give them more reason to comment on vexatious behaviour but that is their short-coming. It’s a tactic of defense when they can’t actually defend their behaviour.
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What your implying is we are afraid that protecting our interests is too dangerous because an organization that harms our interests will use it against us so we should let them have more personal information to use against us.

All of this is just distracting from the science that so many want to discuss. This thread is public and just more fodder for their ‘vexatious’ comments. Why put any credence into what they say? I think you all have had your say. Why not start a thread called ‘Why AfME sucks big time’ and accept the fact that S4ME is not some venue of censorship only allowing the opinion of some but not others.
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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.

There have been more then a few posts in the members only forum of people who have said things akin to i'm posting this here because its not public, but we defend the "right" of an organization that is willing use anything they can get against us to access that non public information.
Its interesting that i keep being accused of wanting to ban them, even though i keep saying that is not my position, it seems that thinking of consequences is a bad thing and must be beat down even if it means massive supposition.
I'm sure i have made a few enemies here just by saying private information should have a bit of safeguard. I did not realize this would be such a bad thing to say and i apologize to anyone i have offended by saying you should have some right to privacy in a private forum yet i will not change my mind on this issue.

What has AfME succeeded in doing — setting members against each other, getting members to leave. Just imagine their power now, they join a forum — guaranteed response — argue, threaten to leave. Don’t feed the trolls.
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People not liking a policy of those who want to harm them being given privileges against them is not a bad position. Its not one i am taking personally but i understand anyone who takes advantage of the right to remove themselves from a situation they don't want to be involved with. That may also mean if the forum has an ignore function i may be on it many times by now. I don't aim to offend people but i do speak my mind though i don't aim to be a troll, i aim to protect our interests, though few agree with me. I don't expect any actions will be taken because of my posts, in fact i'm probably screwing myself over by speaking out and making points that are argued with while my counter points are ignored or conflated.

Perhaps somebody — maybe just the Committee only — should invite them into having a moderated conversation about their purpose in joining. I would love to know why they joined.
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This is not unreasonable, i would fully support this but we need to remember that talk is cheap, actions matter, if they say all the right things then do the opposite publicly then we should bear that in mind. When you give away trust your setting yourself up to be burned.
 
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Alvin said:
What your implying is we are afraid that protecting our interests is too dangerous because an organization that harms our interests will use it against us so we should let them have more personal information to use against us.
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No I am not.

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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What does this have to do with this thread. Nothing. If you have an issue with moderation, post on the moddie forum.

There have been more then a few posts in the members only forum of people who have said things akin to i'm posting this here because its not public, but we defend the "right" of an organization that is willing use anything they can get against us to access that non public information.
Its interesting that i keep being accused of wanting to ban them, even though i keep saying that is not my position, it seems that thinking of consequences is a bad thing and must be beat down even if it means massive supposition.
I'm sure i have made a few enemies here just by saying private information should have a bit of safeguard. I did not realize this would be such a bad thing to say and i apologize to anyone i have offended by saying you should have some right to privacy in a private forum yet i will not change my mind on this issue.
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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.

Even if you have a super private forum, it only takes one member to post stuff publicly on the internet. Nobody can control that.

People not liking a policy of those who want to harm them being given privileges against them is not a bad position. Its not one i am taking personally but i understand anyone who takes advantage of the right to remove themselves from a situation they don't want to be involved with. That may also mean if the forum has an ignore function i may be on it many times by now. I don't aim to offend people but i so speak my mind though i don't aim to be a troll, i aim to protect our interests, though few agree with me. I don't expect any actions will be taken because of my posts, in fact i'm probably screwing myself over by speaking out and making points that are argued with while my counter points are ignored or conflated.


This is not unreasonable, i would fully support this but we need to remember that talk is cheap, actions matter, if they say all the right things then do the opposite publicly then we should bear that in mind. When you give away trust your setting yourself up to be burned.
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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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