Information Commissioner's Office orders release of PACE trial data

[MeSci]

I think there was another thread on this somewhere. Could this be it:

http://forums.phoenixrising.me/index.php?threads/can-we-make-good-use-of-placebos.10256/

Yes, that's it.

All In The Mind has a tendency to be of the same anodyne, unquestioning school as other BBC 'science' programmes, albeit with less of the infuriating and widespread BBC 'teenage' giggly, excitable chatter that has replaced most serious academic content.

 

[alex3619]

Don't forget, we're not all severely affected. On a good day I am strong, can walk about 500 metres on the level quite easily, and could easily kick over a trashcan/dustbin, but would absolutely not do it due to also being an environmentalist who abhors litter.

My 'militancy' tends to consist of scientific and factual/logical arguments. I might pick up a bit of litter as an act of angry defiance.

I was continuing the joke @SOC made. Very old ME patients in wheelchairs kicking over a trashcan in protest.

 

[cornwall13]

Regarding the placebo effect, if the CBT GET were just placebos, then wouldnt the follow up study mean patients reported health would not have sustained and may have even fallen?

Interestingly, if cbt and get were so wonderful, why didnt the patients health improve more at the follow up study!!! If patients felt it was working, they probably would have asked for more treatment andvthey should have improved even more.

 

[Bob]

Regarding the placebo effect, if the CBT GET were just placebos, then wouldnt the follow up study mean patients reported health would not have sustained and may have even fallen?

It's important to look at the difference between the groups rather than the changes within a group. There are many factors that may affect changes within a group, such as natural improvements over time. Perhaps ME tends to stabilise and improve over time in a proportion of patients? Looking at the essential differences between groups, the improvements in the CBT/GET groups were not sustained.

 

[Kyla]

In the same year, this paper was published claiming that a placebo could work even if people were told that it was a placebo.

This is a good debunking of that study (and a few more junk-science ideas about placebos):
https://www.painscience.com/articles/placebo-power-hype.php#open-label

 

[wdb]

Willingness to Share Research Data Is Related to the Strength of the Evidence and the Quality of Reporting of Statistical Results

Background
The widespread reluctance to share published research data is often hypothesized to be due to the authors' fear that reanalysis may expose errors in their work or may produce conclusions that contradict their own. However, these hypotheses have not previously been studied systematically.

Methods and Findings
We related the reluctance to share research data for reanalysis to 1148 statistically significant results reported in 49 papers published in two major psychology journals. We found the reluctance to share data to be associated with weaker evidence (against the null hypothesis of no effect) and a higher prevalence of apparent errors in the reporting of statistical results. The unwillingness to share data was particularly clear when reporting errors had a bearing on statistical significance.

(tweeted by James C.Coyne)

 

[MeSci]

Willingness to Share Research Data Is Related to the Strength of the Evidence and the Quality of Reporting of Statistical Results

Background
The widespread reluctance to share published research data is often hypothesized to be due to the authors' fear that reanalysis may expose errors in their work or may produce conclusions that contradict their own. However, these hypotheses have not previously been studied systematically.

Methods and Findings
We related the reluctance to share research data for reanalysis to 1148 statistically significant results reported in 49 papers published in two major psychology journals. We found the reluctance to share data to be associated with weaker evidence (against the null hypothesis of no effect) and a higher prevalence of apparent errors in the reporting of statistical results. The unwillingness to share data was particularly clear when reporting errors had a bearing on statistical significance.

(tweeted by James C.Coyne)

Ooooh, he's good.

 

[Never Give Up]

Someone catch me up on this Annie Gsampel thing, please.

 

[ahimsa]

Someone catch me up on this Annie Gsampel thing, please.

I believe it started as a joke by Graham, making fun of the idea that people could recognize themselves from anonymized data from the PACE trial. (one excuse for not releasing the data, even anonymously, was to protect patients. yeah, right, those PACE researchers have a great reputation for being worried about protecting patients)

I first saw this joke in this tweet by Tom Kindlon:

https://twitter.com/i/web/status/662708340825284609

Hmm, I'm having trouble with the twitter interface. It's probably just me, but here's the link for anyone else who only sees "Twitter media loading..." instead of the actual tweet:

https://twitter.com/TomKindlon/status/662708340825284609

The name Annie Gsample = any example (if you say it with the right accent)

That's what I know about the name, others may know more!

 

[Scarecrow]

The name Annie Gsample = any example (if you say it with the right accent)

If you really have the right accent it sounds like 'an example' (say Annie Gisample with the shortest of short 'I's after the 'G'.)

 

[Sean]

Any-ig-sample is how I am saying it.

 

[Woolie]

Any-ig-sample is how I am saying it.

Gsample is pronounced like the opening of Geshundheit or Gesumped. Then it works.

 

[Never Give Up]

I believe it started as a joke by Graham, making fun of the idea that people could recognize themselves from anonymized data from the PACE trial. (one excuse for not releasing the data, even anonymously, was to protect patients. yeah, right, those PACE researchers have a great reputation for being worried about protecting patients)

I first saw this joke in this tweet by Tom Kindlon:

https://twitter.com/i/web/status/662708340825284609

Hmm, I'm having trouble with the twitter interface. It's probably just me, but here's the link for anyone else who only sees "Twitter media loading..." instead of the actual tweet:

https://twitter.com/TomKindlon/status/662708340825284609

The name Annie Gsample = any example (if you say it with the right accent)

That's what I know about the name, others may know more!

Ah, OK. I was trying to figure out how this started. Thank you!

 

[Bob]

I wish you'd all stop talking about my name as if I wasn't here!

 

[ahimsa]

If you really have the right accent it sounds like 'an example' (say Annie Gisample with the shortest of short 'I's after the 'G'.)

D'oh! Typo!

(or should I say "think-o" since the problem was probably in my brain, not a slip of the fingers)

I meant to write "an example" not "any example." After all, I should know how to pronounce my own name!

 

[wdb]

So how do we find out if they do appeal or release the data ?

 

[JohnnyD]

The deadline is Monday, so we'll know then.

 

[Sasha]

The deadline is Monday, so we'll know then.

Might take a few days for the complainant to be notified, I would imagine.

 

[JohnnyD]

Might take a few days for the complainant to be notified, I would imagine.

Yes, indeed. Monday is deadline to appeal, and I imagine the release of data could take a week or two if they don't appeal.

 

[Scarecrow]

Yes, indeed. Monday is deadline to appeal, and I imagine the release of data could take a week or two if they don't appeal.

If they don't appeal, they've got 35 days from 27 October to provide the data, so 1 December or thereabouts.