TRIBUNAL ORDERS RELEASE OF PACE TRIAL DATA (QMUL v the IC and Matthees)

The First-Tier Tribunal judgment in this case (click on that link to read full judgment) has just been published. [Update: the judgment was removed on 1 September for minor corrections. It was reinstated on 7 September but with a different url].

QMUL’s appeal has been roundly dismissed and strongly criticized in a majority decision. The Tribunal has therefore decided that the requested data from the PACE trial should be released.

I have just skimmed the 48 pages of the judgment and so have only taken in a small amount so far. However, it appears that this is a defining moment for the international ME community and the PACE Trial itself. Alem Matthees (the original requestor of the data) has done an extraordinary job. Retraction Watch covered the development here.

However, it is important to remember that, in theory, QMUL could still seek leave to appeal against this judgment to the Upper Tribunal so we cannot yet be certain that this judgment will stand.

[UPDATE September 2016: QMUL is NOT appealing the decision and the data will be released. Retraction Watch linked to Virology Blog article here].

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Background note for new readers

In March 2014, Mr Matthees sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, Mr Matthees complained to the Information Commissioner (IC) who, in October 2015, ordered that the information be disclosed. QMUL appealed against the IC’s decision; that appeal was heard by the First-Tier Tribunal on 20-22 April 2016 in central London. QMUL and the IC were legally represented and QMUL called witnesses to give evidence. Mr Matthees had been joined as a party to the proceedings. He was not legally represented and did not attend the hearing but made written submissions.

[Note: the PACE trial, which was published in 2011, relates to certain treatments for the condition known as “chronic fatigue syndrome” (CFS). CFS is often conflated (confusingly) with myalgic encephalomyelitis (ME) and referred to as CFS/ME or ME/CFS, to the detriment of genuine ME patients. This is the situation in many countries and has been for decades; it is the cause of significant confusion and distress to many patients. There are an estimated 20 million patients worldwide although conclusive figures do not exist.

The results of the PACE trial promote psychosocial treatments (Graded Exercise Therapy and Cognitive Behavioural Therapy) which many patients find either ineffective or actively harmful. Constructive biomedical research into ME has been sidelined as a consequence (and has been for decades).

Patients have been using FOIA to try to obtain the trial data in order to understand how the PACE results were achieved. However, most requests have been denied, requestors declared vexatious and, five years on, most of the data is still unavailable.]

More detailed information on the history and progress of this case can be found in my series of posts on the PACE Trial (or scroll down right-hand sidebar for “Categories”).

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Disclosure

I have lived with the illness ME since 1981. I currently (2016) have a courtesy academic title at QMUL as Visiting Scholar at the Centre for Commercial Law Studies. I have no connection with the PACE Trial other than as a patient and observer. For more information see About.