UK Government Orders PACE Authors to Turn Over Original Data

[Cort]

In possibly a major event - the UK government ordered the PACE trial authors to turn over the original data from the controversial trial. The PACE authors have the right to appeal.

The Information Commissioner’s Office (ICO) has ordered Queen Mary University of London to release anonymized PACE trial data to an unnamed complainant. Queen Mary has 28 days to appeal the decision.

The report outlines the scope of the data requested, Queen Mary’s arguments for refusing to release the data and the Commissioner’s justification for siding with the patient requesting the data be released.

Among the reasons cited by researchers for initially denying the request was the fear that the “vocal minority” of patients online would actively attempt to de-anonymize the data and reveal trial participants’ identities.

A powerful blogger urges the UK not to appeal the decision

• http://blogs.plos.org/mindthebrain/...ity-needs-the-pace-trial-data-to-be-released/

Why the PACE investigators should not appeal

In the past, PACE investigators have been quite dismissive of criticism, appearing to have assumed that being afflicted with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis precludes a critic being taken seriously, even when the criticism is otherwise valid. However, with publication of the long-term follow-up data in Lancet Psychiatry, they are now contending with accomplished academics whose criticisms cannot be so easily brushed aside. Yes, the credibility of the investigators’ interpretations of their data are being challenged. And even if they do not believe they need to be responsive to patients, they need to be responsive to colleagues. Releasing the data is the only acceptable response and not doing so risks damage to their reputations.

QMUL, Professors White and Sharpe, let the People’s data go.

 

[tandrsc]

If anyone hears if QMUL appeal, please update this post. They only have 6 days left.

I'd love to know who the claimant is.

 

[tatt]

I dont know but I'd guess it's another academic and one with a good track record. It's great that other scientists are finally prepared to stand up and say what the ME community has been saying from the start, this was a seriously flawed trial.

And btw here's another one http://www.meaction.net/2015/11/18/james-coyne-declares-moral-equivalent-of-war-on-pace/

 

[tandrsc]

QMUL have appealed *sigh*

The request was originally made by someone named Mr Matthees. You can read his latest update at:
https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-64718