Prof James Coyne’s Freedom of Information request for data from the PACE Trial has been refused and he has shared the letter he received in explanation. It makes astonishing reading.
There have of course been numerous previous refusals concerning this data but the excuses given are increasingly desperate and unconvincing.
Prof Coyne was told: ‘The university considers that there is a lack of value or serious purpose to your request. The university also considers that there is improper motive behind the request. The university considers that this request has caused and could further cause harassment and distress to staff.’
The letter goes on to say: ‘The active campaign to discredit the project has caused distress to the university’s researchers who hold legitimate concerns that they will be subject to public criticism and reputational damage.’
The letter concludes: ‘The university considers that when applying a holistic approach, this request can properly be considered to be vexatious.’
Bearing in mind that James Coyne requested the data so that he could ‘verify the substantive claims of the article through reanalysis’, it is difficult to see why his request should be thought to ‘lack value or serious purpose’ or why it should be considered that he has ‘an improper motive’.
It is also hard to see why the PACE researchers’ apparent ‘distress’ and their fears of ‘public criticism and reputational damage’ can possibly be considered adequate justification for refusing access to their data. Continue reading “Message to Planet PACE”
It’s been a gruelling and messy few weeks for those of us who try to keep up with developments in the world of ME (myalgic encephalomyelitis). On the plus side, there’s been a comprehensive and damning critique of the PACE Trial by investigative journalist David Tuller. As you may be aware, the 2011 UK PACE Trial purported to demonstrate the efficacy of CBT (cognitive behavioural therapy) and GET (graded exercise therapy) as treatments for ME, findings which have been hotly contested – and for very good reasons – by patient advocates and informed health professionals alike. Now, Tuller’s series of articles has provided an invaluable and comprehensive summary of the numerous failings of the trial all in one place for the very first time.
Then, just as the PACE researchers were firing up their response – a very damaging response, of which more soon – influential Professor of Health Psychology James Coyne joined the fray to explain the shortcomings of the latest PACE follow-up study; while in what may be the most significant PACE development of all, the Information Commissioners Office ordered the release of raw data from the trial, a move which may provide its many critics with the ammunition to finally expose the truth behind the study’s spin and bluster.
Lastly, as far as the positive side of the equation is concerned, though you could be forgiven for overlooking it amid the drama of what is coming to be known as ‘PACE-gate’, the US National Institutes of Health has announced a major new CFS/ME research initiative, the main objective of which will be to investigate ‘at a biological and molecular level’ what happens when someone develops ME following an infection. Furthermore, US CFS/ME research will now be under the wing of the ‘National Institute of Neurological Disorders and Stroke’ as opposed to ‘Women’s Health’, which seems like a more sensible way to proceed, given that men get ME as well.
On the negative side, the PACE researchers published another follow-on study, the latest in a series of number-crunching re-imaginings based on data from the trial, studies which keep the fires of PACE burning over and over again, long after reasoned argument should have extinguished them. This time, unfortunately, the fires were stoked not only by the study itself, yet another triumph of spin over substance, but by a couple of press reports from the Daily Mail and – worst of all – a front page piece from the Daily Telegraph which took the nonsense from the study and transformed it into something so outrageous, unrecognisable and – unfortunately – damaging that even Prof Michael Sharpe, lead researcher on the dodgy study itself, described the article as ‘misleading and insulting’. Continue reading “Telling It Like It Is”
So you think social media are really empowering.
But then you have the PACE Trial, a £5million study of ME (myalgic encephalomyelitis) largely funded by the British Taxpayer which used diagnostic criteria that included people with other conditions; which changed entry and recovery criteria mid-study so that it was possible for participants to get worse and still be classed as ‘recovered’; which jettisoned most of its objective measures of assessment mid-study because they didn’t give the desired results; which despite therefore relying almost entirely on subjective ‘tick-box questionnaire’ measures of outcome nevertheless issued a newsletter for participants mid-study telling them how well the therapies were working; whose authors claimed that these therapies (GET and CBT) led to the ‘recovery’ of many patients with ME even though their physical functioning at the end of the trial was similar to those with congestive heart failure; which has now spawned a follow-on study showing that GET and CBT are actually no more effective long term than the other therapies studied but which nevertheless is spun to give the impression of providing further proof of how wonderful they are; which in turn leads on to a front page story in the Daily Telegraph which is so divorced from any kind of reality that even the lead researcher of this latest manifestation of the mind-numbingly flawed, woefully mismanaged trial itself describes the story as ‘misleading and insulting’.
Try addressing that little lot in a Tweet.
Meanwhile the Telegraph reader looks at the front page, reads the misleading headline and, now feeling reliably informed about ME, turns to the sport…
An overview of David Tuller’s comprehensive critique of the PACE Trial
Sign a petition calling for the retraction of unfounded PACE trial claims