From Valerie Eliot Smith’s blog, 16 August 2016.
QUEEN MARY UNIVERSITY OF LONDON v INFORMATION COMMISSIONER AND ALEM MATTHEES
The First-Tier Tribunal judgment in this case (click on that link to read full judgment) has just been published. QMUL’s appeal has been roundly dismissed and therefore the Tribunal has 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. Alem Matthees (the original requestor of the data) has done an extraordinary job.
However, it is important to remember that, in theory, QMUL could still seek leave to appeal against this judgment to the Upper Tribunal so it will be a bit longer before we can be absolutely certain that this judgment will stand.
I will write a longer post with a more detailed analysis in due course (health permitting).
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. Judgment is awaited.
[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 worldwide.
The results of the PACE trial appear to promote psychosocial treatments which many patients find either ineffective or actively harmful. As a result, some patients have been using FOIA to try to obtain the trial data in order to understand how these results were achieved. However, most requests have been denied and, five years on, most of the data is still unavailable.]
from ME Association
http://ift.tt/2bCWnQe
from http://ift.tt/1yk3j57
#cfsme
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