PACE trial commentaries in the Journal of Health Psychology to be made open access

snowathlete

snowathlete

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Barry53 said:
What sort of circulation does the JoHP have? Not numbers, but "demographics". Do copies go into doctors' surgeries; hospital staff canteens; ambulance staff crew rooms; medical school libraries; etc? Would be fantastic if this special issue found its way into some of these places. and help break the deadlock.
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A copy will be finding its way into my doctor's surgery that's for sure.
 
slysaint

slysaint

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I was hoping to download the whole of the JHP special edition but it doesn't seem to work that way(?).
Anyway, not sure if anyone has posted the editorial:
http://journals.sagepub.com/doi/full/10.1177/1359105317722370

"Abstract
We are proud that this issue marks a special contribution by the Journal of Health Psychology to the literature concerning interventions to manage adaptation to chronic health problems. The PACE Trial debate reveals deeply embedded differences between critics and investigators. It reveals an unwillingness of the co-principal investigators of the PACE trial to engage in authentic discussion and debate. It leads one to question the wisdom of such a large investment from the public purse (£5million) on what is a textbook example of a poorly done trial."

Couple of other bits:

"The Editorial Board wants to go on record that the PACE Trial investigators and their supporters were given numerous opportunities to participate, even extending the possibility of appeals and re-reviews when they would not normally be offered. That they failed to respond appropriately is disappointing."

"On the question of COI, the PACE authors themselves appear to hold strong allegiances to cognitive behavioural therapy (CBT) and graded exercise therapy (GET) – treatments they developed for ME/CFS. Stark COI have been exposed by the commentaries including the PACE authors themselves who hold a double role as advisers to the UK Government Department of Work and Pensions (DWP), a sponsor of PACE, while at the same time working as advisers to large insurance companies who have gone on record about the potential financial losses from ME/CFS being deemed a long-term physical illness."

Full editorial is only 3 pages long:
http://journals.sagepub.com/doi/full/10.1177/1359105317722370
 
Leopardtail

Leopardtail

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AndyPR said:
This, to my mind, is an interesting thought. No doubt anything that we did to prove that we patients feel that we have been distressed by their actions would be dismissed by them but I think it could be of some use to accumulate evidence for this.

I know that there just seems to be so many petitions floating around at the moment but I think this could be one way of doing it - the Change.org platform allows for comments as well, so that people could leave more detail if they wished. Off the top of my head the petition could be "By signing this petition, I confirm that I feel the actions of the PACE authors have caused me distress". We might want to ask for only patients to sign it though.
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I suspect that us and our charities getting behind Dr Myhill's campaign and taking ownership of it would be a much better use of our energy.
 
Leopardtail

Leopardtail

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Jonathan Edwards said:
I presume the Sharpe reply to Geraghty that everyone else is now responding back to. It really is pathetic that whenever the PACE people are criticised they go crying to mummy or the critic's employer or some committee or other. What they never do is answer the questions posed to them.

It appears that COPE is Coordinators of Psychiatric Education - the headmaster's study no less!! What sneaks.
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Somewhat ironic when they can't COPE with reasonable questions.
 
Snowdrop

Snowdrop

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Leopardtail said:
I suspect that us and our charities getting behind Dr Myhill's campaign and taking ownership of it would be a much better use of our energy.
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I don't agree. I think getting behind one persons position would be a mistake and I don't think we could 'take ownership' of it. Better we do for ourselves and ask those who support us/are our advocates to stand with us.
 
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Leopardtail

Leopardtail

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Snowdrop said:
I don't agree. I think getting behind on persons position would be a mistake and I don't think we could 'take ownership' of it. Better we do for ourselves and ask those who support us/are our advocates to stand with us.
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Note I said take ownership the position is very simply to demand a public inquiry so that things may be properly looked at out in the open air. That means is being 'our demand' for a public enquiry us, our advocates etc, not just that of a lone wolf.
 
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