Message to Planet PACE

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.

Further Reading:

An overview of David Tuller’s comprehensive critique of the PACE Trial

Sign a petition calling for the retraction of unfounded PACE claims

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.

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12 thoughts on “Message to Planet PACE

  1. Well said!

    Not only that, but on Planet PACE you can turn a request for access to data under PLOS One’s data sharing rules, into an FOI request… and then deem it vexatious (Coyne’s request was never an FOI request. The university decided to treat it as one).

    As you say, if the data is as good as they say, then it will be robust enough to withstand independent analysis. If they truly believed in their claims, then there should be nothing to hide, and independent analysis would silence their critics. Unless, of course, the data isn’t robust. In which case, reputational damage will ensue, but is an insufficient reason to withhold the information.

    Unfortunately for the PACE authors, the decision to withhold data from a fellow researcher has been viewed with the suspicion it deserves by academics unfamiliar with the PACE saga. The excuses that have been used to swat away pesky ME/CFS patients for years (fear of threats & harassment, vexatious claims) are looking pretty flimsy in the cold, academic light of day.

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  2. And that is well said too, Simone! Thanks for pointing out that James Coyne’s request wasn’t originally under FOI. I hadn’t picked up on that. Yes, it is good that academics without a previous interest in PACE are expressing their concern about this. It’s not just us patients that the PACE researchers have to deal with now. They have been fighting back partly by branding us as trouble-makers (and there may well be more of that to come as they find their backs against the wall) but ‘neutral’ academics will not be such an easy target. Many thanks for leaving your comment, Simone.

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  3. I have a different message for the Wessely School: I am a troublemaker. I will not rest until your 30 year “career” of burying ME has ended in disgrace and you are held to account in a court of law. We owe no less to the patients harmed by your fraud, and to the families of deceased patients, especially those who took their own lives.

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  4. Thanks for leaving your comment. I don’t share your point of view but I do understand it. I’ve been ill for 30 years myself. Others have suffered even more and yes, some have died. In that time, more might have been achieved without the misdirection of the unproven psychosocial theory favoured by the PACE researchers, and inappropriate, damaging therapies might have been avoided. Substantial careers appear to have been built on a fallacy.

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  5. You write very well Mr Spoonseeker.
    It’s quite difficult to know where to start, and what to leave out, when you have 30y or more of experience of carefully pointing out the obvious logical fallacies–that pile up as soon as you really start trying to make a psychological case for this illness–but just getting ignored and finding that nobody who really needs to read about them, will even open the files, or–in the early days–letters.

    You’ve managed to get a great set of key points together, in all the posts I’ve read, so I do hope this site gets plenty of discerning readers.

    Well done!

    Meanwhile, the spectacle of a small group of inordinately powerful, but blinkered, researchers, who have very clearly lost their way, digging themselves ever deeper into the mire, leaves me feeling strangely sad. Their pernicious beliefs have stolen half my life and left me bedbound for at least 23hr a day, every day, yet I hate to see even these people acting so pathetically foolishly. But then I have always found farce of the ‘Fawlty Towers’ type excruciating, and these ‘researchers’ are certainly giving Basil Fawlty a run for his money!

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  6. Many thanks for your encouragement! Yes, I’m getting a lot more readers than I expected, thank you, thanks to various kind people helping to spread the word about my posts. Special thanks to Tom Kindlon in this regard…

    It has been very difficult, hasn’t it, to get the truth out there? I remember in particular the House of Lords debate about PACE back in 2013 when the Countess of Mar set out our concerns only to be rebuffed by a succession of noble lords, led by Lord Winston, who assured everyone that PACE was ‘excellent research’ and we must all stop being nasty to the researchers. It was easy to suspect that they had all been briefed by Sir Simon himself – possibly over dinner the previous evening – and to wonder whether it would ever be possible to sow doubts in the closed and self-satisfied minds of the establishment. Well, as disinterested academics begin to sit up and take notice of the ludicrous excuses being made for this latest refusal to share the data, perhaps we can faintly detect the creaking of mountains starting to move. There’s a long way to go yet but we shall see what happens.

    If we do succeed in eventually revealing the truth, there will indeed be little pleasure in it. What we really need are our lives back. But we will have the consolation of knowing that future generations will not have to put up with the ignorance and disbelief that we have endured – and that in time the research will be done to address the physical nature of our condition.

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