TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

[CFS_for_19_years]

And the rest of us are bent over forwards.

Yes, and at least they could have added some lube.

 

[CFS_for_19_years]

I think was just an attempt to intimidate Tuller by suggesting that his article generated abuse.

They are very good at suggesting things without outright claiming or saying them.

Being psychiatrists, they must have learned some things about how patients with borderline personality disorders conduct themselves.

 

[viggster]

Has anyone engaged with DrSeema Yasmin in any form of communication given she is a doctor and journalist?.

Yes, I know Seema and asked if she would look into writing about PACE. She said she's working on a big project now and can't take it on.

 

[beaker]

Just wanted to say I hope this "bullying" narrative won't deter anyone from (politely) advocating on social media. its been mighty quiet on Twitter today.

Bullying and harassment are obviously not ever okay. even when directed at people who are themselves bullies.

BUT...attacking the character of your detractors is also not acceptable, and is a common strategy in terms of shutting up your opponents.

Too wiped to tweet today. stopped in here to distract pain. not working.
anyways.... Just wanted to add that I was on a lot the last couple days w/ all the news, and I did not see any abuse or bullying. I say a lot of David's article shared as well as the one by the North Western U prof that that talked about his article.
There was a lot of feed back to the Telegraph article, but nothing that was personal to anyone. There was some tweets by Wessley but even there , nothing I saw as abuse. He was supporting the new publication and he was handed back the NIH announcements and the fuller article showing that first was so flawed how could this new publication it was based on be valid.
Maybe I missed it. I don't know the authors twitter accounts. Don't want to know them.

 

[Christian Godbout]

Not sure if my sources are reliable, but apparently Donald Trump made a comment on the Pace Trial controversy:

"Yeah the Pace Trial, I'm all for it, I just love this trial, cause it's HUUUUGE, 600 patients, 8 million bucks, that's how you do things, I tell you, - oh and don't let those 8 million scare you, when you think how much money you save in the long run with the treatment recommendations, you just know it's an investment. Yeah the Pace Trial…We need more trials like this one. Let's make science great again."

 

[Hutan]

apparently Donald Trump made a comment on the Pace Trial controversy

For pretty much any issue, I'm on the side that Donald Trump is not. My sense of how the world works would be seriously shaken if he was slamming the PACE trial.

Amazing that it makes it on to his radar though.

 

[Raines]

From the response:

)We chose (subjective) self-ratings as the primary outcomes, since we considered that the patients themselves were the best people to determine their own state of health. /QUOTE]

Ha. These would be the same patients that they were trying to cure of false illness beliefs?

Exactly what I was going to quote and post!

 

[jimells]

I was joking. But seriously, are they perhaps referring to PR, where they have been called idiots, morons and arseholes?

I hope so. I certainly like the idea that we may be annoying them.

 

[jimells]

One might expect the psychiatrists who deal with psychiatric cases to have experienced worse language in a career.

Have any of them actually dealt with psychiatric cases in the clinic, or just in their ivory towers?

 

[jimells]

Being psychiatrists, they must have learned some things about how patients with borderline personality disorders conduct themselves.

Probably by looking in the mirror.

 

[jimells]

Yes, I know Seema and asked if she would look into writing about PACE. She said she's working on a big project now and can't take it on.

I like your new icon. It's always good to see a fellow patient smiling.

 

[beaker]

For pretty much any issue, I'm on the side that Donald Trump is not. My sense of how the world works would be seriously shaken if he was slamming the PACE trial.

Amazing that it makes it on to his radar though.

I am 99.9999999% sure that was written as a parody . ;-)

 

[SOC]

According to the communications department of Queen Mary University, the PACE investigators have been receiving abuse on social media as a result of David Tuller’s posts.

I really wish they'd be explicit about what they mean by "abuse on social media". Experience tells us they define abuse (as applied to themselves) unbelievably broadly. I suspect that if they actually described what they are calling abuse, they'd be laughed off the Twitterverse.

I think their claim of abuse is simply further manipulative bullying techniques on their part -- an effort to intimidate us into not talking among ourselves and expressing to each other our opinion of their behavior. Criticism, however much the PACE authors may not like it, is not generally considered personally intimidating in the media world (social or otherwise).

To be clear, I don't support threats of physical harm in any context, or direct attacks such as posting streams of invective on their Facebook pages or sending them insulting emails, or anything that could be considered by any reasonable person to be personally intimidating.

Frankly, I doubt they're receiving any more of that than anyone else whose name has become public through their own choice to engage with the media. They want to have their cake and eat it too. They want to express their opinions in the public media, but they don't want to deal with the response if everyone is not happy with their opinion. Reality is finally smacking them in the face and they don't like it.

 

[Sean]

I suspect that if they actually described what they are calling abuse, they'd be laughed off the Twitterverse.

Their claims of abuse are probably as reliable and substantive as their claims about CBT/GET delivering recoveries.

 

[SOC]

I think it was just an attempt to intimidate Tuller by suggesting that his article generated abuse.

They are very good at suggesting things without outright claiming or saying them.

Tuller didn't make them look bad. They made themselves look bad with their shoddy work. There's something really sick in suggesting that it's Tuller's article that generated the alleged abuse, when any "abuse" they may be getting is clearly the result of their work and their statements. Again with the smoke and mirrors.

Tuller did not say anything patients have not been saying for years. No new criticism has developed in the patient population as a result of his article. The criticism they so abhor was going on in social media among PWME long before Tuller's article, so it's completely irrational to blame the article for that. What Tuller's article has done that the patient population has not been able to do previously is get the PACE trial garbage in front of the non-patient public. Are the PACE authors admitting that even the general public is heaping criticism on them in social media now? So it's not just their imaginary mentally ill, hostile ME-terrorists complaining about their nonsense, but ordinary people?

So, either they believe they are being criticized by PWME in social media, which is nothing new so can't be blamed on Tuller, or they believe that they are being abused for no good reason by the general public -- a belief for which there is no evidence. The first belief is irrational, and the second is paranoid.

Poll:
Are the PACE authors being:
A: irrational
B: paranoid
C: irrational and paranoid
D: none of the above

 

[TiredSam]

I really wish they'd be explicit about what they mean by "abuse on social media". Experience tells us they define abuse (as applied to themselves) unbelievably broadly. I suspect that if they actually described what they are calling abuse, they'd be laughed off the Twitterverse.

I think their claim of abuse is simply further manipulative bullying techniques on their part -- an effort to intimidate us into not talking among ourselves and expressing to each other our opinion of their behavior. Criticism, however much the PACE authors may not like it, is not generally considered personally intimidating in the media world (social or otherwise).

To be clear, I don't support threats of physical harm in any context, or direct attacks such as posting streams of invective on their Facebook pages or sending them insulting emails, or anything that could be considered by any reasonable person to be personally intimidating.

Frankly, I doubt they're receiving any more of that than anyone else whose name has become public through their own choice to engage with the media. They want to have their cake and eat it too. They want to express their opinions in the public media, but they don't want to deal with the response if everyone is not happy with their opinion. Reality is finally smacking them in the face and they don't like it.

I agree it's probably manipulative, a way of distracting anyone who is following the news at the moment. Claims that the PACE trial is faultly are based on rational argument and statistics, claims that the authors are being bullied promote an emotive response. An audience reacts to emotional content much more readily than to facts and figures, so an emotion provoking story about bullying is an excellent way to distract the audience from looking at the books.

Emotional anectodes are one of the weakest forms of evidence, but at the same time one of the most attention grabbing. If someone counters your rational argument with an emotional anecdote, you are never going to persuade them or win the audience back by responding with facts and figures. The best response is to counter with an emotional argument of your own, then follow it up with the facts and figures you wanted to present.

This could be why the psychoquackers sometimes seem to gain ground in the mass media, but are losing ground in the scientific community, because the (international) scientific community isn't so easily distracted (apart from the BMJ and Lancet in the UK, which are a disgrace) and are full of people more interested in facts and figures. It's also why the personal narratives of ME patients who have been subjected to GET are so powerful, and potentially useful in getting our message across.

 

[Sean]

Poll:
Are the PACE authors being:
A: irrational
B: paranoid
C: irrational and paranoid
D: none of the above

E: Wot you looking at?

 

[Art Vandelay]

Just wanted to say I hope this "bullying" narrative won't deter anyone from (politely) advocating on social media. its been mighty quiet on Twitter today.

Bullying and harassment are obviously not ever okay. even when directed at people who are themselves bullies.

BUT...attacking the character of your detractors is also not acceptable, and is a common strategy in terms of shutting up your opponents.

Like most here, I'm extremely sceptical that people with ME/CFS have seriously abused the PACE authors.

Perhaps someone should lodge an FOI request to see just how many times the PACE team have made reports to the police about the supposed harassment and threats towards them?

Then, doing so would probably constitute 'bullying' in their world.

 

[worldbackwards]

I did call Sharpe a nob on one of these threads the other day.

IT'S ALL MY FAULT.

 

[TiredSam]

I wouldn't put it past them to start sending abusive messages to each other now to back up their claims.

In fact I have no memory of calling them Arseholes yesterday, I think they must have hacked my account.