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.
The arguments simply don’t add up. If the data supports the claims of the study, why should there be ‘public criticism and reputational damage’? If it doesn’t, then who could argue against the ‘value’ and ‘serious purpose’ behind the request? They can’t have it both ways.
But apparently they think they can.
And apparently they think it’s credible to refuse an FOI request on the grounds that reputations will be damaged if the data ever gets out.
What planet do they think they’re on?
Planet PACE presumably.
Because on Planet PACE, strange things happen.
On Planet PACE, the results of a study are still judged credible even though the Oxford diagnostic criteria they used were pronounced ‘flawed and should be retired’ by the Institutes of Medicine ‘Pathways to Prevention’ Report.
On Planet PACE, it’s OK for participants to be sick enough to be entered into the trial, get worse, yet still be classed as ‘recovered’ at the end.
On Planet PACE, it’s OK to class participants as ‘recovered’ even though their physical functioning is similar to that of people with congestive heart failure
On Planet PACE, it’s OK to drop objective outcome measures without any explanation.
On Planet PACE, it’s OK to hype your favourite therapies in a newsletter for participants even though your outcomes chiefly depend on their subjective ratings of those therapies.
On Planet PACE, it’s OK not to declare the conflicts of interest of the researchers.
When even after all these ‘adjustments’ your outcomes are modest at best, it’s fine on Planet PACE to claim they’re conclusive.
On Planet PACE, it’s fine to get your pals at the SMC to brief the media on how to misreport the findings of your follow-up study.
On Planet PACE it’s fine to show little or no concern when the media make outrageously misleading comments on the back of your threadbare results.
And of course on Planet PACE, people with what they call CFS/ME are simply ill because they’ve rested too much and got deconditioned. If they try to do more, they’ll get better.
So I guess In view of all that, it’s hardly surprising that on Planet PACE, it’s OK not to hand over your data because you’re distressed and are worried about your career.
Unfortunately, the rest of us have to live on Planet Earth, where people with ME (myalgic encephalomyelitis) have a ‘serious, chronic, complex, systemic disease’ that profoundly affects our lives. (IOM Report)
Where we have post exertional malaise as demonstrated by the work of Prof Van Ness. So unlike controls our functioning deteriorates on the second day of exercise.
Where 74% of patients report that GET (as recommended by PACE) has made them worse.
Where many people report having become housebound or bedbound after receiving GET, often indefinitely.
Where the most severely affected receive no medical attention. The worse they get the more they get ignored.
Where parents are threatened with their children who have M.E. being forcibly taken into care because the authorities believe they’re being made mentally ill by their parents.
Where for many years there has been little biomedical research, in large part because the money has gone into studies based on the erroneous psychosocial model proposed by PACE.
So the message to Planet PACE is this:
Dear PACE researchers – Don’t worry, our aim is not to wreck your careers, or even to cause you distress. I know this may be difficult for you to believe, but this isn’t all about you. What it’s really about are the millions of people worldwide who have M.E. All we want is the truth. All we want is for you to hand over your data for analysis, or better still – as we can come to no other conclusion from reading this latest letter of yours – just come clean and admit that PACE has been deeply flawed all along and should be retracted.
Then we can put a stop to people with M.E. being given inappropriate exercise and the medical profession can put its attention where it needs to be, where it should have been all along: into biomedical research to understand and find much needed medical treatments for this devastating condition.
Correction: James Coyne’s data request was not made under the Freedom of Information Act but under PLOS One’s data sharing rules. The PACE researchers, however, chose to respond as if it were an FOI request.