MEA website poll on press coverage of latest PACE trial analysis

Snow Leopard

Hibernating
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South Australia
Having discussed this issue with several people involved, and seen emails etc that I believe are genuine, I stand by my long standing position that there is a very, very tiny minority of people with ME/CFS, or who claim that they have ME/CFS, that resort to sending abusive or offensive communications (including anonymous phone calls - I am a doc whose number still appears in the telephone directory) to people they dislike or strongly disagree with.

I condemned this behaviour at the time of the BMJ article and the BBC coverage and will continue to do so because the negative publicity it creates, and continues to create, is used to divert attention form serious and valid disputes with psychiatry over the cause and management of this illness

Well said Charles.

A small minority of people acting violently tends to be common to most movements. Everything from civil rights movements, to AIDS activism. Movements are not homogenous and well-planned, they are chaotic. There are embarrassing elements to all movements.

We need to acknowledge that it occurs, but also point out that those who participate in abusive behaviour do not represent our community and citing that abuse occurs should not be used to silence the rest of the community.
 

ukxmrv

Senior Member
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4,413
Location
London
We need to acknowledge that it occurs, but also point out that those who participate in abusive behaviour do not represent our community and citing that abuse occurs should not be used to silence the rest of the community.

I just can't see how we can make this work.

The "abuse" is used as a shield to stop discussion on the points important to patients

If we continue to apologise then nothing good happens. It just adds to the air time for the obstruction.

They will never "move on". They like their shield, they are not interested in an apology.
 

SOC

Senior Member
Messages
7,849
I just can't see how we can make this work.

The "abuse" is used as a shield to stop discussion on the points important to patients

If we continue to apologise then nothing good happens. It just adds to the air time for the obstruction.

They will never "move on". They like their shield, they are not interested in an apology.
The problem here is that we are fighting with people using sociopathic bullying techniques -- deflection, misdirection, lies, exaggeration, humiliation, insult, false compliments, pretend sympathy, selective hearing, over-generalization (all women do xyz, ME patients are hostile militants). Bullies and sociopaths (and bullying sociopaths) have been successful throughout history because those techniques are effective in altering the view of the general public in their favor. Whether these people are actually bullying sociopaths, or just knowledgeable and nasty enough to use the techniques for their benefit is a difficult call. I'd say the best assumption is that they are not sociopaths, just people willing to use whatever nasty technique works to their advantage.

We can't let ourselves play into their game. It's a "when did you stop beating your wife" scenario. If we apologize for the the behavior of people who don't represent us, then the bullies twist it to mean that we accept responsibility for it. If we refuse to apologize, then they cast it as condoning the behavior. It's difficult to win if we allow ourselves to be forced into the dialogue at all. As soon as you try to answer "when did you stop beating your wife", you lose.

Let us remember that this question is not about comforting people who are hurt by abuse and insults. That's not where they're standing. These people bring this up because they are using this unfortunate situation as a weapon against us. They don't need our apologies and comfort. What they're looking for is our defeat and humiliation.

Perhaps the best we can do is either ignore their weapon or make an attempt to damage the weapon. Does the weapon actually have any substance, or is it imaginary? Is it real, or is it the emperor's new clothes? Is being called a bitch or an idiot in social media abuse at the level that makes it acceptable to cast an entire patient group as militant terrorists unworthy of sympathy and support? Is having your professional failures called out in public actually abuse?

Where is the evidence of abuse at the level necessary to label an entire group hostile terroristic militants? A few nasty insults in an email are unpleasant (and unjustifiable), but it hardly justifies the incredible over-reaction we're seeing. "One black guy on the street insulted me when I called him a n****r and told him not to drink out of the water fountain, therefore all black people are vicious, violent, abusive militants." I don't think so. That says more about the over-reacting person than the vilified group as a whole or even the individual who responded to the original insults with further insults and thereby handed the bigot a weapon.

Is this issue of a bit of nastiness in social media worth focusing on, or is the whole point of their weapon to keep us focused on it instead of on the real issues?
 
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Esther12

Senior Member
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13,774
I think that we should just try to be reasonable and present our viewpoint, without being too worried by whether they like it. I don't think that ME terrorism is an important issue, and if people try to distract from patient's concerns by claiming that it is, then it's fair to compare it to the way in which patients have been treated. We shouldn't deny things when we do not know if they have happened or not, but I do think it's fair to point out that any problems seem pretty trivial when compared to the serious problems with the way in which patients have been treated.

A lot of people towards the top of British society seem to think that they and their friends are rather precious, while ME patients should be grateful for a lack of open derision. I don't think that we should play along with their assumptions.
 
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Valentijn

Senior Member
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15,786
If we continue to apologise then nothing good happens. It just adds to the air time for the obstruction.

They will never "move on". They like their shield, they are not interested in an apology.
Agreed. I think the best response is to turn it around on them, and lead back into the real issues (poor research). Something along the lines of "Well, they say we're abusive if we simply disagree with their spin on their data, or file a FOI request. And that's because they know they've got no leg to stand on regarding blah blah blah."

I'm not going to apologize for 1) something I didn't do, 2) something I haven't seen good evidence of more than 1 or 2 other people doing, 3) something that happened years ago, and 4) angry non-threatening responses made in response to patient-baiting.

Getting caught up in discussing the accusations of threats is their game, and I'm not interested in playing. It's a distraction from the real issues at hand, and that's exactly what they want.
 

Seven7

Seven
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3,446
Location
USA
I just got asked an interesting question why is the media reporting or interested in PACE.
Answer: This is not coincidence, this was a planned response to the review made by (Tuller ?). All this articles were strategically placed and even discussed to their convenience,.

The best way to respond is not in their articles, is ignoring and not give them $$ incoming traffic except to post links to the real articles and to redirect to real discussions.

Redirect and beat them in their own game WITH DATA, articles of plp and real experiences. Analysis of their data and so on. I think the MEs organizations need to have premade articles and testimonies and when Psy attack we bury them on links to the see we consider worth knowing of ME. This is how imaging companies "Clean" people web-images. We use the same technique as an organization. We need to do a formal web based image campaign for ME.
 
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