Information Commissioner's Office orders release of PACE trial data

[RustyJ]

I don't understand something here, why does it matter if you see your own data? Surely the only issue is if you can recognize other's data.

 

[Sidereal]

I don't understand something here, why does it matter if you see your own data? Surely the only issue is if you can recognize other's data.

It's a ludicrous argument but I suppose it might be upsetting to some to recognise your own data when you compare your scores to population norms and other disease groups and you realise you're scoring in the range of MS or heart failure patients.

 

[Valentijn]

Note that I am still Annie Gsempel.

I was Annie Gsempel first!

 

[RustyJ]

It's a ludicrous argument but I suppose it might be upsetting to some to recognise your own data when you compare your scores to population norms and other disease groups and you realise you're scoring in the range of MS or heart failure patients.

That could make sense except for this:

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.

 

[Sidereal]

There are two assessment points (baseline & 52 week follow-up) so if you filled out the baseline questionnaires and scored very low and then refused 52 week assessment you might potentially be able to identify yourself and be upset by your baseline score. Hypothetical and stupid example, this whole line of reasoning is stupid.

 

[Snow Leopard]

No, I am Annie Gsampel.

I'll give a heart to anyone who posts the I am Annie Gsampel meme on Twitter.

 

[Sasha]

I'll give a heart to anyone who posts the I am Annie Gsampel meme on Twitter.

Gotta say I think it reads as "An Eee Gee Sample", which doesn't make any sense (hence my problem ).

 

[Bob]

Gotta say I think it reads as "An Eee Gee Sample", which doesn't make any sense (hence my problem ).

Address all letters of complaint to Graham. But only if you're happy to receive a limerick in reply!

 

[Sasha]

Address all letters of complaint to Graham. But only if you're happy to receive a limerick in reply!

Expecting a revenge limerick any time now!

 

[Bob]

My cat would like me to tell you all that she's Annie Gsempel. (Argue with her at your own risk!)

 

[Bob]

Gotta say I think it reads as "An Eee Gee Sample", which doesn't make any sense (hence my problem ).

Annie Gsempel
=
Ann iegs (<<ignore the 'i' and read as 'egs' or 'eggs' or 'X', unless Australian then keep the 'i') sample.

 

[Sasha]

Annie Gsempel
=
Ann iegs (<<ignore the 'i' and read as 'X', unless Australian then keep the 'i') sample.

An eeeeg sample. This is why I don't get it!

And people call me pedantic! No idea why.

 

[Valentijn]

An eeeeg sample. This is why I don't get it!

And people call me pedantic! No idea why.

Okay, you can be the Egg Sample

 

[John Mac]

M

I don't understand something here, why does it matter if you see your own data? Surely the only issue is if you can recognize other's data.

Maybe they are worried people might recognise their own data and realise it's been modified

 

[Jonathan Edwards]

They say she was Annie Gsample,
zose on ze English zey like to trample.
But if you speak posh
It doesn't rhyme ...
like in Limerick, as an example.

 

[Sean]

I was Annie Gsempel first!

Et tu, Annie?

 

[Sidereal]

Coyne weighs in on the FOI request in his inimitable style:

 

[BurnA]

Coyne weighs in on the FOI request in his inimitable style:

View attachment 13541

Nice to see him put pressure on Ben Goldacre. Is bad science not bad science no matter who or what Ben?

 

[Snow Leopard]

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.

Dear aforementioned visitors. I hope you like our little community. Feel free to join and engage us directly to discuss any concerns you might have. Contrary to what you might have heard, we don't bite.

 

[Esther12]

Fabricating the data requested would be a a clear fraud. I don't think that there's any realistic chance this will happen.