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Information Commissioner's Office orders release of PACE trial data

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Sasha

Fine, thank you
Messages
17,863
Location
UK
V

Valentijn

Senior Member
Messages
15,786
Sasha said:
Queen Mary University of London sound positively deranged in how they've approached this. Just extraordinary.
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Yeah, most of their claims are pretty far-fetched, bordering on paranoid. There's no way that any patient is going to be identified out of the 640 participants, based on the scores being requested. And I'm still not sure why they think it's dangerous to risk a patient recognizing his or her own data.
 
A.B.

A.B.

Senior Member
Messages
3,780
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leela

Senior Member
Messages
3,290
Not to mention if their treatments were so great, why would recovered or recovering patients leave the study in droves just from reading the actual data? Which would you rely on when choosing your treatment protocol: your direct experience, or published datasets?
 
Cheshire

Cheshire

Senior Member
Messages
1,129
The University believed that the publicity surrounding the disclosure that would occur if the requested information were to be released would cause anxiety to those who participated that they would be identified.
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They seemed less worried to cause anxiety to these patients with headlines like the Telegraph's, generated by their double-talk and insinuations.

http://www.meaction.net/wp-content/uploads/2015/05/fs_50565190.pdf
 
C

cornwall13

Messages
40
Chances are they will appeal, but do you think their appeal will be successful?? What would be the time scales for this?
 
jimells

jimells

Senior Member
Messages
2,009
Location
northern Maine
cornwall13 said:
Chances are they will appeal, but do you think their appeal will be successful?? What would be the time scales for this?
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They are going down whether the data is released or not. They might want to save their pennies for defense counsel rather than spending them on ICO appeals.

I find it amusing that these powerful and well-connected people are so afraid of a bunch of patients that can barely get to the toilet.

Perhaps they are not quite as powerful and well-connected as they think they are.
 
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Esther12

Esther12

Senior Member
Messages
13,774
Seems very likely that they will appeal, and try to use legitimate patient concerns about the PACE trial as evidence that we're dangerous and anti-science. At this point it wouldn't surprise me if they used the titanic image to claim we're planning sabotage and terrorism. Their arguments were very weak, but they do have authority and influence behind them - they could win it just on that.
 
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Yogi

Senior Member
Messages
1,132
Excellent news.

They really are good at making fictitious and bogus arguments about their concerns for patients when they have been harming patients with the media misrepresentations over the last few weeks and with their treatments.

"If the participants were to be identified as either suffering from CFS/ME or having taken part in the trial, it would cause them damage and distress."

They could still go to court to appeal I understand. I know their allegations were just fiction but lets just be careful what is said here.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Their arguments are ridiculous - you can't identify people from a bunch of scores that don't include things such as sex, age or location. The eyes of the public are on PACE now - I don't think they're going to get away with making such a stupid argument.
 
V

Valentijn

Senior Member
Messages
15,786
Esther12 said:
Seems very likely that they will appeal, and try to use legitimate patient concerns about the PACE trial as evidence that we're dangerous and anti-science.
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Yeah, the data isn't out yet, and they'll be desperate for proof of our supposed ill-behavior or ill-intent.

And as always, we aren't allowed to be angry about injustices (because hey, we're just "those" patients), and need to stay calm and polite, even when ridiculous and defamatory things are being said about us. Fortunately we've already had a lot of practice at doing exactly that :rolleyes:

Plus it's more fun watching respected scientists, doctors, and journalists get angry on our behalf now :D It makes for a very nice change, and far less exhausting!
 
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leela

Senior Member
Messages
3,290
I love how they, who are backed by a professional PR team, keep painting us as a highly organised activist organization. While, yes, it is true, thanks to Tom and Jen and many others, the patient community *is* becoming more active and vocal, and actually being *heard* for the first time maybe ever.

However, they are paying a team of spin doctors, while patients are exhausting themselves analysing their crap science, pointing it out, and then being described as doing harm to our own by shining a light on their shenanigans.

This is very foolish and it is becoming clearer every day who is doing the harm.

I can't imagine how it must feel to put saving face before the well-being of millions of people. I understand they feel their careers and reputations are at stake; have they thought about how all of us lost such things and more, long ago, to this illness?
 
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