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The PACE data have been released (9 Sept 2016)

Sasha

Fine, thank you
Messages
17,863
Location
UK
http://www.qmul.ac.uk/media/news/items/smd/181216.html#

Celebrate!

We should be on our knees thanking Alem Matthees, the patient who made the Freedom of Information request and stuck through two years of appeals and nonsense from the PACE authors and Queen Mary University of London, who have covered themselves in shame over how they've handled this.
 
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Messages
13,774

A.B.

Senior Member
Messages
3,780
What does this mean for other people that have requested information?

The statement by QMUL suggests they view this as only applying to the Matthees request. There are still other requests for data, such as the one by Tuller and colleagues, and that of Coyne. It would be good to clarify this point.
 

Gijs

Senior Member
Messages
690
I don't see any data? Maybe Alem will get them first.
 
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Stewart

Senior Member
Messages
291
So, true to form, QMUL have left it to the eleventh hour to declare what we all expected all along.

Any chance that they'll now - after two and a half years - give Alem the data without further unnecessary delay? Or will they come up with some new barely plausible excuse to draw this out further ("We've hired a statistician especially to deal with your request, but I'm afraid
it'll take us a few months at least to train him up...")?
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
So to recap about this awful Scientific Fraud episode:

80% of UK CF patients entered into a $8 million public funded trial, with mental illness Oxford criteria CFS (F48.0), did not respond to the therapy that is currently rolled out across the UK, via the Department of Health that runs the National Health Service (NHS) in UK.

Yet...

The UK NHS has rubber stamped the same ineffective therapy all over the country (via their NICE Guidelines) that doesn't work: Claiming CBT/GET is ''Evidence Based'' for patients without mental illness criteria CFS (G93.3), commonly referred to in the UK as, 'CFS/ME', that is diagnosed in GP practices country wide.

Which makes me wonder:

Is the useless CBT/GET therapy for CFS ME, the biggest scale medical fraud ever committed in a Western democracy?
 

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Yogi

Senior Member
Messages
1,132
What does this mean for other people that have requested information?

The statement by QMUL suggests they view this as only applying to the Matthees request. There are still other requests for data, such as the one by Tuller and colleagues, and that of Coyne. It would be good to clarify this point.

Although not a legal precedent I presume that they will now find it very difficult to use any of these bogus arguments of 1. patient confidentiality / 2. vexatious / 3. harassment / 4. no qualified statistician / 5. only to bona-fida researcher / 6. only release to health economist / 7. too prohibitive above £450 / 8. not in public interest / 9. motivated intruder / 10. unable to anonomyse data / 11. "improper motives" / 12. young male psychopaths /13. colluding with corrupt NHS staff etc blah blah against any other FOI requests.....

..........but you never know with Peter White and how vexatious he might be.

Did I miss any of the excuses?

Edit: also ME patients = tobacco co. and climate change sceptics
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@Yogi laid out like that, it's all especially egregious. They've pulled out every stop to avoid doing this, it's madness.

I doubt that they've given up, however. I think they can feel pretty confident that the Lancet will support them no matter how poor their data, so they can continue other, very similar trials with impunity. Even if PACE were totally discredited (er.... moreso), imply that it was only this one trial, not the thinking behind their actions that is to blame.

-J
 

Kati

Patient in training
Messages
5,497
I don't like this press release. QMUL is still protecting their assets and seem to be sending plenty of warnings.

Statement from Queen Mary University of London (QMUL):

A Tribunal has concluded by a 2:1 majority that certain PACE trial data should be disclosed to a member of the public under the Freedom of Information Act.
Basically they say they will release the data to one person, Alem Matthees

The PACE trial was carried out according to the regulatory framework for UK clinical trials, which aims to ensure that trial participants can be confident that their information is only ever used according to their consent, and that their data is only shared under obligations of strict confidentiality. The outcomes were subject to the usual standards of peer review for published scientific research
.

1) Forget about the unlocked cabinet and stolen recordings.
2) Peer review? What peer review? Were the peer reviewers bribed in any way?
3) This tells me that QMUL will be on high alert on how this data will be interpreted, and shared. They are sending warning signal that perhaps they will use legal proceedings to protect theor assets.

QMUL’s appeal against the Information Commissioner argued in favour of controlled and confidential access to patient data from the PACE trial in accordance with established policy and practice in medical research. QMUL had previously shared data from the PACE trial with other researchers only when there was a confidentiality agreement in place and an agreed pre-specified statistical plan for data analysis.

QMUL's rules:'our way or the highway' has prevented critical eyes over their data and their study conclusions. Lancet has protected them throughout. Here once more they are sending warnings, stressing 'confidentiality of data'. They are still hiding behind the concept of de-identified data to prevent the truth from coming out.

In complying with the Tribunal’s decision, we remain mindful of the interests of trial participants and acknowledge the assurance given by the Tribunal that participants will be adequately protected from personal identification by the disclosure of this information. No names or addresses of any participants have been released. We will continue to engage with other universities and bodies to debate the broader implications of the decision for clinical research

Still trying to save face here, standing their grounds and they will continue to fight for their principles. Basically they do not like it at all that they are dealing with vexatious patients and vexatious demands, but then that idea has been squashed by the ICO tribunal. They are not raising a white flag here.
 
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A.B.

Senior Member
Messages
3,780
@Kati I don't know the legal situation, but after thinking about it a bit I would be surprised if QMUL can set rules on how this data will be used and with whom it will be shared. My guess is that the Alem Matthees can share this data with anyone he pleases (it would be nonsensical to have a FOI law that by default doesn't actually allow sharing of the information). A tribunal has ruled that this is anonymous data so there should be no problems.

So I think this is just posturing from QMUL, an intimidation tactic, to discourage critics and create the appearance of problems where there are none.

What isn't clear is how this will affect the requests for data from Davis et. al. and from Coyne.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
CDC supporting the PACE trial ideology:

CBT
http://www.cdc.gov/cfs/management/quality-of-life.html
GET
http://www.cdc.gov/cfs/management/managing-activities.html

See how absurd this whole situation is? What an absolute disgrace this is. Lying to patients, and claiming CBT GET works, with no objective scientific measures to back up your claim.

For CFS patients, CBT can be useful by helping them pace themselves and avoid the push-crash cycle in which a person does too much, crashes, rests, starts to feel a little better, and then does too much once again.

Source: http://www.cdc.gov/cfs/management/quality-of-life.html

The above is a direct replica of the mindset of the PACE trial. ME CFS symptoms are not associated to by a ''push crash cycle'' (Idea propagated by Wessely School). Yet more BS from the CDC copying the British ME denial lobby, who make claims, with No Objective Scientific Measures = Not Science.