"Another request for data from the PACE trial" 36 more scientists join request for PACE data

[Aurator]

Can anyone say how many of the trial participants are actually likely to know about the recent requests to have the PACE data released? I'm assuming that trial participants who would actually voice objections against the release of the data are not likely to be people whose symptoms cause them to identify with PwME and are therefore not likely to be people who keep abreast of ME news. Have the PACE team (or people acting on their behalf) proactively and strategically sent out some kind of letter to all trial participants warning them, possibly in alarmist terms, of a potential threat to their anonymity? We need to hear from some actual trial participants.

 

[Mrs Sowester]

Can anyone say how many of the trial participants are actually likely to know about the recent requests to have the PACE data released? I'm assuming that trial participants who would actually voice objections against the release of the data are not likely to be people whose symptoms cause them to identify with PwME and are therefore not likely to be people who keep abreast of ME news. Have the PACE team (or people acting on their behalf) proactively and strategically sent out some kind of letter to all trial participants warning them, possibly in alarmist terms, of a potential threat to their anonymity? We need to hear from some actual trial participants.

I doubt they would write a letter - too overt. But I expect they will have been manipulated during conversations and by the drip, drip propaganda of the SMC via the press. The whole CBT process in PACE was manipulation.
I'm certain that many of the 'recovered' who had a mood disorder (rather than ME) would no longer keep abreast of ME news if they felt GET helped them - some probably believe they have recovered from ME and pity us for not engaging with the therapy!!!

 

[Mrs Sowester]

@SilverbladeTE
And gold sinks
It's the horribly superior colonial attitude of the ruling establishment that gets me, the public boarding schooling system doesn't help - they've had the humanity buggered out of them before they're out of long trousers! They are taught to crave and abuse power by the institutions that raise them - I'd pity them if they didn't cause such harm.

 

[SilverbladeTE]

@SilverbladeTE
And gold sinks
It's the horribly superior colonial attitude of the ruling establishment that gets me, the public boarding schooling system doesn't help - they've had the humanity buggered out of them before they're out of long trousers! They are taught to crave and abuse power by the institutions that raise them - I'd pity them if they didn't cause such harm.

Yup :/ Ian Duncan Smith is classic example of it, in times past he'd have been sent to some awful post in middle of nowhere that his incompetence could cause too much problem, no Empire anymore so he ends up in charge of things he shouldn't
man was so incompetent in the army his C.O. used him as a "gopher" and the ProvoIRA refused to kill him, jeesh

UK's "public school" (that is, high priced very stuffy private education to Americans) all set up a system where sadistic and sexual abuse was common place, "Elites" wanted their kids to be basically psychopaths, traded them for political favours etc so resulting in the ugliness we know exists now, no matter how much they desperately cover it up
And then they expect us to trust them with nuclear weapons or running the country?! Wouldn't trust them with a Nerf Bat never mind a Trident missile!

During WW1, that mind set had their youth all being officers, because only the elite should lead...ah huh..which got them killed in droves. not all of 'em were bad, no, lot felt they should live up to the ideals, some were damn good, but the mentality/class consciousness etc only officers had special uniforms and carried pistols, well the German snipers had a field day so the officers got shot 4 to 7 times more likely on average than "other ranks"
which resulted in a "sea change" as so many were killed it wiped out lot of the "elite" families (good bloody riddance! but terrible loss to have the changes)

but, there's a push to undo the work done after those two wars, the Elite want unfettered rule again, and no "rule of law" to stop them.
I don't believe there's an single "new world order", yet, but just generalized desires of many Elites, oligarchs etc all brewing into a toxic tide, we're one part of that. Many things combined undermining Democracy, many problems being denied and covered up, leading to a huge catastrophe eventually, for example look at the problem with bees...

*said in a stuffy upper class accent*
"Oh no we cannot have the chemical companies inconvenienced! they pay Tory AND Labour party campaign contributions...all those environmentalists are bad for business!"
well, no bees = no Human Race...so I say F*** Monsanto etc
and who supports such who's against environmentalists? Spiked/Living Marxism now uber libertarians and the SMC etc

and today's thought

an oldy by me

if I'd know back then about the "piggy" incident I'd have said something about him relishing that "bacon flavour"...

 

[BurnA]

I am just writing this post in order to report it.
If the moderators want to do something about it fine, if not this post can be deleted.

A lot of this thread seems to be duplicating the discussion on Tell our charities : QMUL must release PACE data.

In fact the title of this thread is slightly incorrect because the letter was not for releasing the data - it was for independent review of PACE.

Now there are two threads discussing more or less the same thing. It might be David Tullers fault because I think he got the title wrong when he first posted the updated letter but I believe it's now corrected. I am sure we can forgive him.

 

[Mrs Sowester]

I am just writing this post in order to report it.
If the moderators want to do something about it fine, if not this post can be deleted.

A lot of this thread seems to be duplicating the discussion on Tell our charities : QMUL must release PACE data.

In fact the title of this thread is slightly incorrect because the letter was not for releasing the data - it was for independent review of PACE.

Now there are two threads discussing more or less the same thing. It might be David Tullers fault because I think he got the title wrong when he first posted the updated letter but I believe it's now corrected. I am sure we can forgive him.

So you're calling the ruling British elite psychopathic, pig fiddling bastards on another thread too? Magic!

 

[Large Donner]

So you're calling the ruling British elite psychopathic, pig fiddling bastards on another thread too? Magic!

Oh, if only you could say that on the BBC evening news!!

 

[JaimeS]

Hard to believe that patients don't want anonymized data to be shared. I wonder what these patients were told. Or if they're not PACE authors posing as patients.

Yep. This is ridiculous. No one is going to recognize your data from a numerical value or other completely neutral identifier. Their privacy is not in danger or in question, so far as I can see. Am I missing something, or is this a complete fiction?

-J

 

[skipskip30]

Yep. This is ridiculous. No one is going to recognize your data from a numerical value or other completely neutral identifier. Their privacy is not in danger or in question, so far as I can see. Am I missing something, or is this a complete fiction?

-J

Id love to see how someone could identify anyone from the anonymised data. I think even GCHQ or the NSA would struggle.

 

[jimells]

I'm sure there must be one out there someplace, but so far I have never seen a comment from a PACE participant that said they want the data withheld. I have never seen any patient or patient advocate or physiology researcher say that either.

 

[Luther Blissett]

Yep. This is ridiculous. No one is going to recognize your data from a numerical value or other completely neutral identifier. Their privacy is not in danger or in question, so far as I can see. Am I missing something, or is this a complete fiction?

-J

Also, under that Data Protection Act, It cannot be considered 'personal data' if the data subject cannot be identified from the information. I'm not completely sure, but I think that if the data is not 'personal data' under the Data Protection Act, then consent is not needed to share. I would assume (haha) that similar considerations would come into account under the Freedom of Information Act.

 

[Kati]

Call me cynical, but I'm pretty certain that's a gentle warning/prelude to AfME announcing they can't support the release of PACE data without the consent of the trial participants.
I think we'd do better to lobby the trial participants (TPs) with the details of how GET is disabling pwME and how children are being forced into treatment.
We also need to remember that the TPs did not all have ME, a substantial subgroup will have had mood disorders and probably benefited from the treatment - then there is the placebo effect from having someone sympathetic take an interest in personal suffering (mental or physical). The care some TPs received during the study was possibly the only attention they received to help them with their mood disorder excepting pills - this subgroup will feel indebted to and allied with the PACE team.

I wonder how the trial participants feel about the unlocked cabinet containing their private information, and loss of data which was reported? Because this is worse thant releasing anonymized data number like SF-36 score.

 

[barbc56]

I would think somewhere, someplace, maybe in a dark forbidden closet, there's someone who has access to a computer program that has the code to break the numbers and get the patient's names. But the reality of the situation is that it's almost impossible to do this and the emphasis is on the study data not personal data.

Ignorance about this issue works to the PACE authors' advantage.

Patients in general are fearful of any health information going public. Psychological information is even more worrisome.

Maybe the next move is informing other patients about the implications of releasing the PACE data.

I have no idea if the board will address this but tbh, I confuse all the "advocacy" organizations.

 

[Snowdrop]

First: What @Valentijn said (post #33 & #36)
@Scarecrow That's optimistic (post #37) I'm not holding my breath and if I was a betting person and had money I'd lay it all on their spending a great deal of time at the meeting trying to figure out how to pacify us while still maintaining their original decision.

As for patients who call AfME their advocate of choice. I have read text of ME patients defending the PACE trial.

You and I cannot fathom why (although I really would like an explanation) one is never forthcoming--at least not one that makes any sense (the PACE trial is well done research!) I'm going to go with the suspicion that some people with mild ME find it personally useful to defend PACE--maybe it's the profession they're in that benefits them enough to sell the rest of us down river. But this is speculation. The PwME defending PACE are keeping a low profile--while they know AfME will do the advocacy work for them.

Expect more waffling from AfME--an attempt to mollify us while not coming out against PACE.

 

[Large Donner]

What the hell is the scientific process without anonymised data being part of publication, peer review and also publicly available in a publicly funded trial that is making claims about effectiveness and the safety of treatments doled out by the state?

 

[halcyon]

Patients in general are fearful of any health information going public. Psychological information is even more worrisome.

We're not talking about DNA here. Or contents of their CBT sessions, etc. We're talking about literal numbers in a spreadsheet.

 

[BurnA]

I'm going to go with the suspicion that some people with mild ME find it personally useful to defend PACE--maybe it's the profession they're in that benefits them enough to sell the rest of us down river.

Why would mild patients defend PACE ?

I know you said it's speculation but even speculation should have some basis.

Otherwise you are tarring a large no.of patients with one very ugly brush.

 

[Scarecrow]

@Scarecrow That's optimistic (post #37

Yes, I know. But it's not over until it's over.

 

[jimells]

What the hell is the scientific process without anonymised data being part of publication, peer review and also publicly available in a publicly funded trial that is making claims about effectiveness and the safety of treatments doled out by the state?

We are not supposed to question the High Priests of Babble, unless you want to get thrown in the volcano!

 

[Snowdrop]

@BurnA

I have read text of ME patients defending the PACE trial.

I won't identify them--I think that would be wrong--but I've been blocked on twitter by them.
PS: for future reference I would never say something like that without hearing first hand.