Information Commissioner's Office orders release of PACE trial data

[RustyJ]

I still don't get it!

Energy Sample, or Any Goddamn Sample?

 

[Sean]

I am still Annie Gsempel, and so is my wife.

 

[Woolie]

I still don't get it!

Maybe you have to have the right accent: say it together fast ann-ig-sample = an example.

 

[Woolie]

I am still Annie Gsempel, and so is my wife.

 

[Sidereal]

I still don't get it!

It means An Example of a person with ME/CFS who cannot possibly be identified. Any one of us, the great unwashed, could be a person with those scores, it is impossible to say, "Hey, I know who that is..." from someone's Chalder and SF-36 scores. Hope that clarifies things.

 

[Sasha]

Maybe you have to have the right accent: say it together fast ann-ig-sample = an example.

I think this only works with an Oz/NZ accent!

Anne X Ampel, maybe!

 

[Bob]

I don't understand the AnnieGSampel joke! I get the Spartacus reference but what's the deal with the name?

I think it's a random name invented by Graham.

Edit: I hadn't noticed that it sounded like "an example"! I'm a bit slow sometimes.

From earlier in the thread...

It's astounding that the PACE team tried to claim that this data could threaten patients' anonymity. I can just imagine getting the data 60, 65, 28, 25, 10, 10, yes, yes, 4, 3, 321, 332, CBT and announcing to the world, "Yes, that's Annie Gsampel! I'd recognise her anywhere!"

 

[Valentijn]

How about some objective measures to go with those questionnaires? Or does that make any effect disappear and then you can no longer claim that CFS is a job for psychiatrists and psychologists?

Yes, actometers always contradict any subjective improvements. The Wiborg review of three Dutch CBT/GET trials using actometers came out in 2010 ... not sure how that compares to the timing of the changes to the PACE protocol, specifically the decision to drop the actometers. I think that was one of the questions they refuse to answer

Though PACE investigators certainly could have heard about the Wiborg actometer results a bit earlier. The Dutch authors kept the actometer results buried for at least a couple years, by withholding those results from the original papers that came out years earlier. And they are research groups who share the same beliefs, have worked together in the past, and tend to defend each others work - so the motivation to share the results prior to the 2010 publication of Wiborg could have been there.

 

[MeSci]

In the UK, "militant" has overtones of "the militant wing of the IRA" - that is, the ones who used to blow people up, as opposed to their "political" wing.

A google search shows "militant" as meaning "confrontational" or "violent". There's obviously a big difference. I prefer to avoid the word "militant" for obvious reasons, given what PWME have been accused of. If people want to be verbally confrontational (as opposed to abusive) then I think that can be appropriate - but never violent.

Minor (?) point - the IRA is/was the militant wing of Sinn Fein, which is a political party.

 

[MeSci]

I think it's a random name invented by Graham.

Edit: I hadn't noticed that it sounded like "an example"! I'm a bit slow sometimes.

You are not alone - I didn't get it either.

 

[beaker]

They do. Yet what is more extraordinary is that the ICO singled out those quotes and deliberately publicised them, when I don't think they had to.

There might be an interesting side story there.

What is significant in the long-term is that the government has provided us with a magazine-full of ammunition to shoot down many of the arguments used by the Wessely group to close down debate. And there will be a need for it, because even if PACE is dismantled, until the psychiatry block has also been dismantled, we will get no decent treatment, funding or research.

They(UK gov) need a way out --To back track and come out as the good guys. The NIH Collin's announcement has shown them the future and they don't want to be the bad guys. They just may let these "scientists" hang to achieve that objective.

 

[Tyto alba]

Yes, actometers always contradict any subjective improvements. The Wiborg review of three Dutch CBT/GET trials using actometers came out in 2010 ... not sure how that compares to the timing of the changes to the PACE protocol, specifically the decision to drop the actometers. I think that was one of the questions they refuse to answer

Though PACE investigators certainly could have heard about the Wiborg actometer results a bit earlier. The Dutch authors kept the actometer results buried for at least a couple years, by withholding those results from the original papers that came out years earlier. And they are research groups who share the same beliefs, have worked together in the past, and tend to defend each others work - so the motivation to share the results prior to the 2010 publication of Wiborg could have been there.

Were any cognitive challenge tests (e.g. n-back, stroop etc) ever suggested or performed?

 

[Woolie]

Just wanted to add that I just checked, and the petition to retract misleading PACE claims has now reached 8,422 signatures in only nine days.

http://my.meaction.net/petitions/pace-trial-needs-review-now

I'm struck by how much this goes against the so-called "vocal minority" that Queen Mary University say are critical of PACE.

 

[Sasha]

Just wanted to add that I just checked and, the petition to retract misleading PACE claims has now reached 8,422 signature in only nine days.

http://my.meaction.net/petitions/pace-trial-needs-review-now

I'm struck by how much this goes against the so-called "vocal minority" that Queen Mary University say are critical of PACE.

Exactly! And the petition's target is 10,000. Only 1,578 to go and that's very, very doable!

If you haven't already signed the petition and spread the word, please do it now.

If you're aware of any relevant FB groups etc. who might not have seen it, or groups you can tweet to, please do that too.

This petition is making history! And if QMUL appeal, it could be a great thing to use at any tribunal.

 

[RustyJ]

They(UK gov) need a way out --To back track and come out as the good guys. The NIH Collin's announcement has shown them the future and they don't want to be the bad guys. They just may let these "scientists" hang to achieve that objective.

Maybe, tho SW's pay grade is atmospheric - there is quite a power structure linked to the Wessely group, corporate and political. I get the sense this is pretty localized.

Edited to protect the anonymity of an individual. If other posts have quoted this could they please consider doing the same.

 

[Countrygirl]

"Perverting the Course of Justice" (love that phrase) is a serious offense. It would be a very bad idea, unless they like concrete cages.

Meanwhile, one of their victims Karina Hansen is 'celebrating' her third birthday incarcerated, abused and separated from her loving family, a disgraceful crime that, if I recall correctly, has been effectively condoned by the visit of Professor Peter White to Denmark.

 

[WillowJ]

Have you ever played Mad Gab?

Annie Gsempel is like that.

Sounds like any example to me, more than an example.

 

[MeSci]

I don't think it matters much if we have angry militants or not, they will continue to make out as if we are all a bunch of crazy militants.

Memilitants posts on Twitter were extremely tame and they were used as an example of harassment.

So there is no point in being too careful or polite here, say it like it is.

The UK media love to publish stuff on extremism and militancy. Here is one of the worst - but still typical - recent examples of UK media (deliberately?) misrepresenting marches/demonstrations and distracting readers from the actual point of the demos.

Bizarrely, immediately beneath this statement from a demonstrator:

"The media twist it. We are peaceful, we are doing this in a peaceful manner, but the media focus on the 1% who cause trouble."

is a series of dramatic photos of the 1%!

It makes much more exciting copy than an interview with a peaceful demonstrator quietly explaining what the demo is about.

The disruptive idiots have infiltrated pretty-well every sizeable demo for as long as I can remember.

The media coverage then gives the public the impression that demonstrators on all issues are militant, lawless troublemakers.

Sound familiar?

(Militants might have more difficulty infiltrating a demo by disabled people, as they are always very obviously able-bodied!)

 

[MeSci]

@A.B. Are you the author of this image? James Coyne might want to used it for a possible blog post.

Second comment: ... And the band played on...

What might they have been playing?

 

[WillowJ]

Now this is an interesting bit:

As all these data were taken and/or derived from participants, it believed that they would be aware of
their answers, particularly when they scored very high or very low on certain measures, or when they declined to take a test, such as the walking test, due to being unwell.

Note that I am still Annie Gsempel.