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Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

Stewart

Senior Member
Messages
291
On record, in front of people who cross-examine them all that nonsense just evaporates. I wish we had a transcript or video.
Seconded - I thought this several times while I was reading the judgement. I would *love* to know exactly what Chalder said, and whether the evidence session really went as badly for her as the judgement makes it appear.
 

Cheshire

Senior Member
Messages
1,129
The commissioner completely swept the "nut and agressive patients" narrative presented by Pr Anderson:

upload_2016-8-16_13-26-50.png


Woww...
 

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
About Mr Matthees concern that QMUL restrict their sharing to friendly searchers team:
Confirmed by Chalder herself (page 31):
Professor Chalder states that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
It was a majority decision, which seems to suggest that one of the three tribunal members was against us and it could have been a close thing!

On page 2, I was pleased to see us referred to as “people suffering from “chronic fatigue syndrome””, rather than “patients”, which as I’ve said before implies we have a meaningful relationship with the health services and access to medical care, which we don’t. This gets even better on page 6 when CFS is replaced and we are just referred to as “ME sufferers”, which is exactly what we are.

Pages 14-15 are just brilliant. The argument that the data is not anonymous is dismissed by referring to a 2008 amendment to the PACE trial protocol in which says “all the data will be completely anonymous”. Prof. Malcolm Hooper and David Tuller get a mention, as does the theft of a digital audio recorder and undeclared links to insurance companies.
 

Sidereal

Senior Member
Messages
4,856
So, to make a long story short, under oath in front of a judge they were unable to produce any evidence of a campaign of harassment against them. Chalder was once heckled at a seminar. That's it. Will this change the British press narrative of ME patients as violent, extremist militants who make researchers feel less safe in the UK than in Afghanistan?
 
It was a majority decision, which seems to suggest that one of the three tribunal members was against us and it could have been a close thing!
The reasons for their decision are given from page 39 onwards, the reasons why the one tribunal member disagreed are given on page 42. The difference between the two, the reasons for release are detailed while the reasons against release are, in the main, one sentence long, hopefully indicates how much weight will be given to them in the future.
 

Cheshire

Senior Member
Messages
1,129
This is history!

Not only is QMUL told once again to release the data
but
the "crazy patients campaign" is distroyed in a law court
and the way in which they want to share the data to friends only is officially disclosed.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Dear QMUL and other researchers involved in the PACE study.

You wasted all this time and money on legal bills to what end?

If you had published all of the data as specified in the protocol and not tried to fudge the "recovery" figures by using unrealistic thresholds (eg a SF-36 PF score of 60 is not a valid representation of "normal" or "recovered health"), then these FOI submissions would never have been necessary. Thresholds I might add, had already been pointed out to be in error in commentaries published in the Lancet. You should have decided then to publish the summary data properly, rather than withholding it.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Hahahaha I am literally laughing my ass off

She complained about the coffee cup-episode in court, what a complete nutter :D

Anyways this is fantastic
Congrats to all who have been involved doing the job others should have done for us!
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
The reasons for their decision are given from page 39 onwards, the reasons why the one tribunal member disagreed are given on page 42. The difference between the two, the reasons for release are detailed while the reasons against release are, in the main, one sentence long, hopefully indicates how much weight will be given to them in the future.
Thanks, I'm only up to page 16 but I'm so beside myself with excitement that I can't stop posting ...
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Wow, just wow. They've actually given these people a thorough pasting. If that isn't a big crack in the dam I don't know what is. Wow.

Seems the tribunal have really done their homework, and they didn't like what they found one bit. They seem to have concluded all the things people round here have been saying forever. Cool!

Can we give Alem Matthees an award, please?
 

user9876

Senior Member
Messages
4,556
Confirmed by Chalder herself (page 31):

Professor Chalder states that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel.

This leads to the question of which 'independent researchers' they have shared their data with and why not say who. I think their public statements did say independent researchers such as Cochrane,