A Tribunal has now concluded by a 2:1 majority that certain PACE trial data should be disclosed under the Freedom of Information Act.
qmul.ac.uk/media/news/items...
The AHRQ have also changed their stance on research using the discredited Oxford criteria which PACE used.
Thanks for this post.
It's great news isn't it. And the even better news is that now the only option open to QMUL for further appeal is the Upper Tier Tribunal which only allows for appeal based on a specific point of law. That said I do wonder what they will do to delay or ignore the trial findings though as they clearly have something to hide.
It has also come at a good time for me as tomorrow I have my second appointment with the Pain Management Clinic where I am supposed to choose which of the 3 options of plan to follow that I have been given. Since they are all based on CBT and GET I personally don't want to follow any of them, though to be fair there are some bits in each of them that I do know will help, mainly because I already do them and they do help. Like trying to remain positive, improving your sleep environment as much as you can etc.
Currently printing off articles like the ones above to hand to the psychiatrist when I see her to explain what I'm not happy about. Let's see what happens! Says a lot in itself doesn't it that we have to see a psychiatrist for pain management. All I wanted was hydrotherapy, acupuncture, massage, oxygen therapy, or something like that. Some physical treatment to address a physical problem. Instead I get offered CBT and GET - YET AGAIN!!!
Gentle hugs, Margaret.xx
A great many insights into PACE trial provided in the decision informationtribunal.gov.uk/...
The assessment of activists questioning PACE results as young male sociopath psychopaths was an insight into the depths that researchers are prepared to plumb in defence of flawed research.
A summary of the Information Commissioner's submission argued that: "Professor Anderson's 'wild speculations' about the possibility of 'young men, borderline sociopathic or psychopathic' attaching themselves to the PACE trial criticism 'do him no credit'. Nor do his extrapolations from benign Twitter requests for information to an 'organised campaign' from an 'adversarial group' show that he has maintained the necessary objectivity and accuracy that he is required to maintain."[1] The Tribunal's majority verdict went on to conclude that: "It was clear that [Anderson's] assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder." Of Chalder's testimony, the Information Commissioner reported that "she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. The highest she could put it was that some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se."
Logically if researchers are unable to secure data by anonymising, it follows they have no business collecting something they have no competence of managing once collected.
A very weak argument this refusal of data sharing is in the patients interest when determining which treatment is most effective for patients was the original motive "allegedly" behind research funding.
Tribunal orders release of data meassociation.org.uk/2016/0...
A possibility that the tide is turning meaction.net/2016/08/16/tri...
Considering this is such a big decision how strange that none of the media has found it worthwhile reporting on.
Recruiting Patients for Gene Data Study with Nancy Klimas at Nova (*no travel necessary!*)
Dr LeFanu in the Telegraph asking for specific info re. PEM