PACE Trial and PACE Trial Protocol

[Bob]

Top stuff, @Bob!

Should that have its own thread, with people able to add new links when new studies are published?

It's going to get buried here, and it's such a useful thing.

Great idea Sasha...
I've given it a new thread, for handy reference:
http://forums.phoenixrising.me/index.php?threads/pace-trial-list-of-all-papers-published.34099/

 

[Dolphin]

Not sure whether this was highlighted before? Covers newspaper articles, press releases, etc. from Feb 17/18, 2011

Media Coverage of the PACE Trial
http://www.scribd.com/doc/112487732/Media-Coverage-of-the-PACE-Trial#force_seo

ETA: I've attached it now.

 

[Esther12]

Not sure whether this was highlighted before? Covers newspaper articles, press releases, etc. from Feb 17/18, 2011

I hadn't seen it. Looks helpful -ta, and thanks to Peter Kemp too.

 

[Dolphin]

I've only skimmed this but looks like Mr Matthees is making interesting points. This is from an e-mail alert I set up for the request.

Subject: Your WhatDoTheyKnow email alert


New updates for the request 'Selected data on PACE Trial participants'

======================================================================


Mr Matthees added an annotation (15 December 2014)

"QMUL have refused this request but I want to post an update for

the record. I still maintain that QMUL have failed to provide

convincing reasons why..."

https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-55843


Mr Matthees added an annotation (15 December 2014)

"A few more links that others may find useful: The European

Medicines Agency (http://www.ema.europa.eu) are now backing public

access to clinical tria..."

https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-55844

 

[Dolphin]

Was there one or two responses by Peter White and co to Malcolm Hooper and his complaints to the Lancet? I thought there might be two but I can only find one http://www.meactionuk.org.uk/whitereply.htm. Somebody has asked me. Thanks.

 

[Esther12]

I only remember one, but can't be sure.

 

[Dolphin]

(January 1)

Our Primed, Incurious and Compliant Media: the infamous PACE trial
https://guj30.wordpress.com/2015/01...-and-compliant-media-the-infamous-pace-trial/

 

[Dolphin]

Another PACE Trial paper has been published.

There's a thread on the paper here:
Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of PACE trial
http://forums.phoenixrising.me/inde...ndary-mediation-analysis-of-pace-trial.34927/

There's a thread on the media coverage, etc. on it here:
New PACE paper, more SMC spin.
http://forums.phoenixrising.me/index.php?threads/new-pace-paper-more-smc-spin.34924/

A commentary was published alongside it. There's a thread on it here:
"What makes a difference in chronic fatigue syndrome?": Commentary on PACE Trial mediators paper
http://forums.phoenixrising.me/inde...mmentary-on-pace-trial-mediators-paper.34928/

 

[Dolphin]

From the latest mediators paper:

What fun: another mediation paper to look forward to.

Finally, in this analysis we focused on single mediators and the effects of some of these variables are not likely to be independent. Our forthcoming analysis of multiple mediator effects will provide more information on this issue.

 

[Dolphin]

From the latest mediators paper:

Results from longitudinal analyses incorporating all available mediator and outcome measurements will be discussed in future publications.

Note the plural of publications.

 

[MeSci]

I think it's known as verbal diarrhoea.

 

[Sean]

I think it is known as delaying the inevitable until they reach retirement age.

 

[Dolphin]

Here's a file with all the questionnaires that were used in the PACE Trial. It can be easier to get on top of things with it I think. Also it's a useful source for questionnaires that are used in various other ME/CFS papers:
http://www.megafileupload.com/en/file/599406/PACE-Trial-Protocol-searchable-pdf.html

It may have been uploaded before but no harm posting it again I think.

[I can't upload it to PR - at 13.34 MB it is said to be too big]

 

[Tom Kindlon]

A BMJ e-letter of mine that was posted on the site today:

Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial
http://www.bmj.com/content/350/bmj.h227/rr-10

 

[Tom Kindlon]

I thought this BMJ e-letter was very good.

And great to see a new name writing:

http://www.bmj.com/content/350/bmj.h227/rr-7

From: Carolyn E Wilshire
Senior Lecturer
School of Psychology, Victoria University of Wellington, New Zealand PO Box 600 Wellington, New Zealand

Subject: Re: Tackling fears about exercise is important for ME treatment, analysis indicates

 

[Aurator]

It's a small matter perhaps, and others are bound to know better than I do, but can anyone say whether the quantity of likes obtained by each respondent on the rapid responses page will have a direct influence on which responses get selected for the print publication, and whether the number of likes each response has received will actually be indicated in the print publication?

My only thought is that if readers of the print version are unable to see how many people favoured or did not favour certain responses it will deny them valuable insight into the relative levels of support (by experts and non-experts alike) for the different views expressed.

 

[Tom Kindlon]

It's a small matter perhaps, and others are bound to know better than I do, but can anyone say whether the quantity of likes obtained by each respondent on the rapid responses page will have a direct influence on which responses get selected for the print publication, and whether the number of likes each response has received will actually be indicated in the print publication?

My only thought is that if readers of the print version are unable to see how many people favoured or did not favour certain responses it will deny them valuable insight into the relative levels of support (by experts and non-experts alike) for the different views expressed.

The likes don't show up in the print edition.

BMJ letters have an unofficial word limit of 250-300. Sometimes the editors might try to edit down a letter a bit. But I can't see them doing it with Carloyn's letter or my own. I doubt the like count has much if any bearing on what is selected to be printed.

 

[Sean]

I doubt the like count has much if any bearing on what is selected to be printed.

And neither should it. It is not a popularity contest.

Not even sure that a serious peer-review journal should use a Like button system at all. Don't really see the point.

 

[Aurator]

I doubt the like count has much if any bearing on what is selected to be printed.

That's as I suspected.

And neither should it. It is not a popularity contest.

In an ideal world it shouldn't be. If I wasn't aware how unjustifiably popular biopsychosocial theories about ME are in the NHS, the DWP, and central government, I too wouldn't hesitate to say that the wider popularity of what gets printed about ME in the BMJ should count for nothing.

 

[Dolphin]

Statement (Jan 16) from WAMES (Welsh Association of ME and CFS Support) on the PACE Trial:
http://wames.org.uk/cms-english/2015/01/claims-of-fear-avoidance-in-me-are-misleading/