Information Commissioner's Office orders release of PACE trial data

[jimells]

The possibility that they will appeal as a tactic to delay release of data is huge.
I would also worry about them destroying the data.

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

 

[Kati]

@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...

 

[SOC]

I was thinking more like this

or

only in blue.

 

[jimells]

What we've seen on Twitter over the last week is that the "militant" brush is used to tar everyone who disagrees with them. It's also been used against people who are doing little more than being a bit niggly and argumentative. Angry militant really doesn't help.

They will look pretty silly trying to pin that label on Dr Shepherd.

 

[Kati]

And the band played on...

 

[Seven7]

You do know that now everybody that speaks and gives testimony has to close by standing at the end and yell in a dramatic way:

And #JeNeSuiPasAnnieGSampel !!!!

Pardon my French

 

[Research 1st]

RE: The release of the data on PACE that is currently with-held.

Q) How would anyone ever know if the data we get to see is the original, or the data has been doctored?

Are there safe guards in place to prevent this from happening? Presumably not.
For example the CDC scientist admits they shredded vaccine data on 'black boys' with Autism, for that to happen in the US presumably it can happen anywhere else?

 

[searcher]

RE: The release of the data on PACE that is currently with-held.

Q) How would anyone ever know if the data we get to see is the original, or the data has been doctored?

Are there safe guards in place to prevent this from happening? Presumably not.
For example the CDC scientist admits they shredded vaccine data on 'black boys' with Autism, for that to happen in the US presumably it can happen anywhere else?

We could do the same analysis they did on the data (using their revised methodology) to ensure that we get the same results they published in their papers.

Edit: and considering how many calculations they have already published based on this data (such as standard deviations), I think that it is likely impossible for them to alter this data in any meaningful way.

 

[alex3619]

We could do the same analysis they did on the data (using their revised methodology) to ensure that we get the same results they published in their papers.

Yes, but this can also be fudged. They can just move data points around, so that averages etc. are the same, but the actual plot is different.

 

[SOC]

Yes, but this can also be fudged. They can just move data points around, so that averages etc. are the same, but the actual plot is different.

Hopefully that would take more time and statistical expertise than they have. Hopefully. Sigh....

 

[RustyJ]

Queen Mary University of London sound positively deranged in how they've approached this. Just extraordinary.

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.

 

[A.B.]

PACE is just a symptom of the poor research standards in psychiatry. Most of the CFS research seems to be complete garbage, yet it's considered science that people should refer to when making decisions about treatment. It's sad.

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?

 

[Woolie]

http://www.meaction.net/2015/11/06/government-orders-release-of-pace-trial-data/

The rest of the story is just amazing - go take a look.

I just took a look at the Commissioner's report following your link, @Sasha. What is extraordinary to see is the amount of expensive legal research that went into denying this FOI claim. There are citations to case law from Australia, for heaven's sake! It must have cost the University a fortune to fund this. And one solitary private complainant. A real David and Goliath story.

Oh, and yay, we're famous:

from the Commissioner's report

The University believed that the Commissioner:
“...must further consider this greater risk presented for identification with this data set from the highly motivated requestor who will likely publish it on a CFS/ME group website, such as Phoenix Rising, where it will be available to all CFS/ME activists seeking to discredit the PACE trial and its researchers, as has been demonstrated, since they do not agree with the PACE trial outcomes.

 

[Sasha]

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

 

[Sidereal]

Infamous you mean @Woolie?

 

[Sidereal]

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

An Example.

 

[Sasha]

An Example.

I still don't get it!

 

[RustyJ]

The University believed that the Commissioner:
“...must further consider this greater risk presented for identification with this data set from the highly motivated requestor who will likely publish it on a CFS/ME group website, such as Phoenix Rising, where it will be available to all CFS/ME activists seeking to discredit the PACE trial and its researchers, as has been demonstrated, since they do not agree with the PACE trial outcomes.

But it's only a small minority anyway, so wouldn't matter .

What a nonsensical statement. It would only be used to discredit the PACE trial if it were fudged. Besides patients do not agree with the outcomes because the raw data is unavailable--such a circular argument, they've confused themselves.

If they threw a lot of words together onto a page, did they think no one would bother to read them?

 

[meadowlark]

I still don't get it!

I am also completely in the dark.

 

[Sidereal]

It almost seems like an admission of guilt. If, as they said recently, the findings are "robust", then what's there to fear? A reanalysis will just confirm the robustness.