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Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

Kati

Patient in training
Messages
5,497
[USER=913]@ballard[/USER] have you got inspiration for another piece of artwork? :thumbsup:


Edit: @ballard, could you possibly edit your artwork to include Alem Matthees as one fighter?


image.png
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user9876

Senior Member
Messages
4,556
@Valerie Eliot Smith can no doubt explain things with precision, but my understanding is that this is a tribunal, chaired by a judge, which is there to act as an independent arbiter in disputed cases. I think the tribunal is part of HM Courts & Tribunals Service, not part of the ICO. They're separate things, which is as it should be for an appeals body.

I think you're referring to the refusal of the FOI request made by Graham, which has not been appealed and was therefore only ruled on by the ICO.


This case was between QMUL and the ICO hence the tribunal has to be independent. Alem was an additional party who submitted written evidence. QMUL and the ICO had barristers present their cases with QMUL paying for a QC (Queens council which is a senior barrister).

The ICO made their decision that the information should be released some time ago and were defending that decision.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Thank you so much Alem Matthees for all that hard work. So glad to hear the tribunal did it's job and a thorough one.

Sadly all of the smearing of patients and the harm of this group using their position of authority to further their own agenda has cost so much harm to patients. A harm that might be alleviated going forward but can not be erased as to the terrible cost patients have paid so far.

This is just another piece to a long saga that deserves a full reporting with the idea that it can be prevented in the future.

Just because you speak the right way, dress the right way know the right people doesn't confer on you the authority to make shit up--especially when done to a very vulnerable population.
 

Cheshire

Senior Member
Messages
1,129
This is a very bad day for the GET/CBT proponents (article by Mary Dimmock and Jennie Spotila):

In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and this has tremendous implications for medical education and treatment recommendations.

http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/
 
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Messages
10
Location
U.K.
"This is a very bad day for the GET/CBT proponents" (@Cheshire)

Can't you just picture them wringing their hands, gnashing their teeth, stomping their feet in fury all the while?
(I really shouldn't be so mean.)

....we would have gotten away with it too.....if it weren't for ....

In all seriousness though, it's been a long old road for some people and they have done a sterling job
...I know it ain't over til those fat cats sing....but.... Yay for common sense x
 

Aurator

Senior Member
Messages
625
I don't know what others think, but after reading the tribunal's report I'm frankly nauseated by the scale of the pretence put up by QMUL that this business of not wanting to have the data released was ever anything to do with a desire on their part to maintain patient confidentiality. It's completely implausible that it was, and the tribunal must have seen through this.

I'm left wondering how QMUL can have taken disingenuousness to such extremes and yet not be penalised for their flagrant ass-saving insincerity. They've trifled with everyone's time and patience and yet they're apparently allowed to just walk away and even embark on further PACE trials, for which they already have funding. How much longer do we and the unsuspecting majority of ME patients have to be burdened with this nonsense?

PACE and the people behind it should be immediately sidelined.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I don't know what others think, but after reading the tribunal's report I'm frankly nauseated by the scale of the pretence put up by QMUL that this business of not wanting to have the data released was ever anything to do with a desire on their part to maintain patient confidentiality.
Well if it's any consolation it's now a matter of public record and we can refer to and link to the report whenever and wherever we want to from now on - comments sections of articles, in response to any of them being bare-faced enough to repeat their slanderous lies about us, etc. etc.

PACE and the people behind it should be immediately sidelined.

Looks like it's happening already, and it's a trend that is probably going to increase. Who's going to want to have anything to do with them now except self-deluding crackpots? They can't win, because as long as we're all still ill, we've got nowhere else to go and nothing else to do except keep presenting our case, and with the truth on our side we can only prevail eventually.
 
Messages
14
Location
London, UK
Valerie, if they don't appeal how soon might we expect the data? Do they have to release it within a certain time scale?

And it they appeal, are appeals automatically allowed or could the authorities say their claims for an appeal are groundless and disallow it?
It might be a couple of months before the data is released (if they don't appeal) but it could be sooner or later than that. There's no way of predicting, unfortunately.

QMUL will need to seek permission to appeal (on a point of law only - it's not an automatic right of appeal), firstly from this Tribunal but, if that is refused, they can appeal directly to the next level for permission ie. the Upper Tribunal. It's confusing, I know. This post gives an overview of how it works: https://valerieeliotsmith.com/2015/12/16/foia-a-briefing-note-how-many-pace-requests/
 
Messages
14
Location
London, UK
@Valerie Eliot Smith can no doubt explain things with precision, but my understanding is that this is a tribunal, chaired by a judge, which is there to act as an independent arbiter in disputed cases. I think the tribunal is part of HM Courts & Tribunals Service, not part of the ICO. They're separate things, which is as it should be for an appeals body.

I think you're referring to the refusal of the FOI request made by Graham, which has not been appealed and was therefore only ruled on by the ICO.
Your explanation is absolutely right, Sarah. Thank you.
 
Messages
20
Location
Northern Europe
I don't know how it is in UK and QMUL, but here if professors misrepresent facts, cause 200k£ loses and legal embarrassment to University, they better have very good friends in administration or axe will fall and they can start filling job applications. Tho if this would happen I'm sure insurance industry will provide them cozy home for their services.

I'm very thankful for all of whom made this possible. Thankyou!
 
#MEAction.net piece on the news - http://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/

Lots of lovely quotes from the judgement in there, here's an example
The document summarised the Information Commissioner’s comments on the testimony of Professor Ross Anderson, one of QMUL’s witnesses, who gave evidence on data security. The tribunal panel noted that the Commissioner had referred to Professor Anderson’s “wild speculations” that “young men, borderline sociopathic or psychopathic” would attempt to identify trial participants from the anonymised data, and said that his views “do him no credit”.
:)
 

Seven7

Seven
Messages
3,444
Location
USA
It's an amazing, if not historical day for the ME community around the world. These two events were published today:

The Tribunal has decided that the requested data from the PACE trial should be released. It is likely they will appeal, but the decision is a defining moment. Read more here: https://valerieeliotsmith.com/2016/...f-pace-trial-data-qmul-v-the-ic-and-matthees/

ALSO this announcement: "In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and this has tremendous implications for medical education and treatment recommendations."
http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/

Thank you to the advocates who step up for ME!
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Who is this Prof Anderson fellow? And what planet is he from?

A CFS activist insider involved in a BPS project? Not that they'd be hard to spot - it's the person shuffling around like a zombie looking dazed and babbling a load of nonsense. Hang on a minute - that just might be the perfect cover ...

And rich indeed, considering the BPS insider members we have on PR, reading and reporting back on everything ...
I recall they were afraid of the possibility at one stage of their trial paticipants being discouraged from being involved or having people sign up to a trial with the hidden intent of sabotaging it. Not that there was ever any evidence that pointed towards that being a possibility.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I recall they were afraid of the possibility at one stage of their trial paticipants being discouraged from being involved or having people sign up to a trial with the hidden intent of sabotaging it. Not that there was ever any evidence that pointed towards that being a possibility.
Wow, I hope they took some comfort from that fact that they were in the right place to get help with their paranoia, apparently CBT can be very effective as long as the patient is willing to accept treatment.