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Peter Denton White/Queen Mary, University of London again refuse to release data from £5m PACE Trial

Tom Kindlon

Senior Member
Messages
1,734
Peter Denton White/Queen Mary, University of London have again refused to release data from the PACE Trial, which cost £5 million of UK taxpayers' money and was supposed to be (using their own description) the "definitive" trial of CBT, GET, adaptive pacing therapy and no individual therapy.

They claim a request for the 6-minute walking test results for the (so-called) recovered group is "vexatious."

Many will recall the extremely odd definition of recovery the authors published. People could be classed as recovered with a SF-36 physical function score of 60, meaning one could deteriorate from an entry level of 65 (which represented disabling fatigue) and be counted as recovered.

https://www.whatdotheyknow.com/request/raw_data_for_6mwt
 

Legendrew

Senior Member
Messages
541
Location
UK
They have nothing to fear in releasing the data supposing they have nothing to hide... If I'd done a trial that showed absolute recovery from ME/CFS I'd share every piece of raw data I could to ensure people could see the strength of my trial.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Thanks @Dolphin. Do you know what the background is to Dr Sheridan's request? Is there any truth in Peter White's allegation. Or is he just allowed to pluck words out of the air without substance? You would imagine that if a request was refused on such grounds that White would have to show in what way it is vexatious.
 

Dolphin

Senior Member
Messages
17,567
Thanks @Dolphin. Do you know what the background is to Dr Sheridan's request? Is there any truth in Peter White's allegation. Or is he just allowed to pluck words out of the air without substance? You would imagine that if a request was refused on such grounds that White would have to show in what way it is vexatious.
I don't think there is any truth to Peter White's allegation: Dr Sheridan is genuinely interested in knowing the results. So to use your wording, I think he is "plucking words out of the air without substance."
 

Sean

Senior Member
Messages
7,378
They have nothing to fear in releasing the data supposing they have nothing to hide... If I'd done a trial that showed absolute recovery from ME/CFS I'd share every piece of raw data I could to ensure people could see the strength of my trial.

Exactly. It is simply illogical for White not to release the data, if it supports his claim.

It only makes sense for him to stonewall if it does not.

More than a little telling that it is patients who are asking for data to be released, and also for more objective outcome measures to be used, while the professional 'scientific' psychosocialists are fighting both those requests tooth and nail. I think that pretty much sums up the situation, and makes it crystal clear who actually wants real science done, and who doesn't.
 

Tom Kindlon

Senior Member
Messages
1,734
I highlighted this in a few places. One person e-mailed me this suggestion which I thought I would throw out (I don't live in the UK so am not inclined to do it myself):
Dear Tom

I suppose you wouldn't consider submitting this to the BBC File on 4 programme with the suggestion that it be investigated for a future programme? The programme is usually fairly hard-hitting.

There's another Radio 4 programme called "More or Less" which investigates misleading statistics!

Both programmes can be contacted via the BBC web site.

Kind regards,
 

Dolphin

Senior Member
Messages
17,567
sorry Im lost - could you fill in the background to this please?
The PACE Trial was a big, expensive trial of CBT, GET, adaptive pacing therapy or no individual therapy (all had specialist medical care) for CFS.

They claimed that 21/22% recovered with CBT and GET, while only 7% did with adaptive pacing therapy or no therapy.

However, they used a changed definition of recovery from the one that was planned. People on PR generally think it was a ridiculous definition e.g. could score only 60 on the SF-36 physical functioning questionnaire and be counted as recovered. The distance achieved on the 6-minute walking test would help give good information on whether most people would consider these people recovered or not.
 

Seven7

Seven
Messages
3,444
Location
USA
The way to go is contact the Cfs sympathetic writers ( that have published Lately on Cfs) ASAP and give this study. Make noise, if they are public and situation is known everybody will start questioning the validity.

Also, write a paper and maybe they will give you access to then original paper or make it official the question of the paper by publishing something about the questions! Fight fire with a full force

That should be our new motto. Fight back in a big splashy way!
 
Messages
43
They claim a request for the 6-minute walking test results for the (so-called) recovered group is "vexatious."

where does this bit come from - I understand the PACE Trial - just not the complaint, who its against and who said what, when, where and to whom?
 

Dolphin

Senior Member
Messages
17,567
where is the original reference to Peter White's comments that the request was 'vexatious'?

https://www.whatdotheyknow.com/request/raw_data_for_6mwt
From: QM FOI Enquiries
Queen Mary, University of London

14 July 2014

FOI 2014/F137



Dear Dr. Sheridan



Thank you for your emails of 30^th and 31^st May requesting information
relating to the PACE trial.



You asked, “I would like to request, (for the participants for whom you
have data), the 6 min walking test results both before treatment and at
follow-up for:



1) Those who are recovered according to your published criteria. I would
like the data requested to be broken down into treatment type (as per your
publications - CBT, GET, Adaptive pacing etc)”.



After due consideration we are refusing your request. Section 14(1) of the
Freedom of Information Act 2000 states that public authorities are not
obliged to comply with a request for information if that request is
vexatious
.



In accordance with s.17, please accept this as a refusal notice.



If you are dissatisfied with this response, you may ask QMUL to conduct a
review of this decision. To do this, please contact the College in
writing (including by fax, letter or email), describe the original
request, explain your grounds for dissatisfaction, and include an address
for correspondence. You have 40 working days from receipt of this
communication to submit a review request. When the review process has
been completed, if you are still dissatisfied, you may ask the Information
Commissioner to intervene. Please see [1]www.ico.org.uk for details.

Yours sincerely



Paul Smallcombe

Records & Information Compliance Manager



References

Visible links
1. http://www.ico.org.uk/
Peter White is the Chief Principal Investigator of the trial. He is based in QMUL so it was presumably his decision.