PACE Trial and PACE Trial Protocol

[Dolphin]

https://www.facebook.com/permalink....1331873270203661&comment_tracking={"tn":"R4"}


<Name>


i underwent the pace trial,i really had no idea what i was taking part in.If i said i was feeling better,i was being polite,i felt to ill on times to make notes or fill in forms.I feel very cheated.


· March 19 at 8:39pm

 

[lilpink]

https://www.theguardian.com/comment...ill-health-services-catch-up?CMP=share_btn_fb

PACE obliquely in the Guardian. Good article. Oz centric.

 

[Dolphin]

https://twitter.com/i/web/status/843811318113165313

https://jcoynester.wordpress.com/20...sults-of-the-pace-trial-without-the-raw-data/

 

[Dolphin]

My experience with doctors was that they read the PACE abstract and decided exercise would cure a profoundly ill bedridden person with ME. The fact that The Lancet published the paper was seen as giving it 100% credibility. Refusal of GET resulted in medical notes disparaging patient saying "resistant to care" led to stigmatisation by nurses and some nurses delibratley touting and harming the patient with bright light and noise. The patient deteriorated which made the doctors angry.

https://www.facebook.com/tom.kindlo...1345778368850019&comment_tracking={"tn":"R3"}

 

[Dolphin]

Must original investigators get authorship in re-analyses of their shared data?
by James C Coyne April 07, 2017

https://www.coyneoftherealm.com/blo...uthorship-in-re-analyses-of-their-shared-data

 

[Dolphin]

He discusses the PACE trial and the model it is based on a bit.

Nothing earth-shatteringly new but different to hear something spoken.

https://twitter.com/i/web/status/855384208025550848

 

[Dolphin]

Open Access

Expression of Concern

Expression of Concern: Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis

• The PLOS ONE Editors

• Published: May 2, 2017
• https://doi.org/10.1371/journal.pone.0177037

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037

PR thread on this:
http://forums.phoenixrising.me/inde...ession-of-concern-for-pace-trial-paper.51151/

 

[Esther12]

Guess what happened seven years ago today?: May 12, 2010

That's right, it's this threads 7th Birthday!!


Was that deliberately done on ME awareness day, or just an amazing coincidence? This celebration of turning 7 is just in time for the #millionsmissing campaign.

Can anyone here can think of a better way to spend seven years, than pointing out the problems with the PACE trial? Not I.

A bit of fun Beatles trivia is that the first and last photos of the fab foursome together were taken exactly seven years apart:

Wednesday, August 22, 1962 – The Cavern Club

Friday, August 22, 1969 – John and Yoko’s home

Now I'm not saying that the Beatles didn't do some significant things in those seven years... but did they get an expression of concern put on an important medical paper? I don't think so.

Congrats and thanks to all those who've posted here for all the work gone into finding the very many problems with the very many PACE papers, and the slow but steady progress made with having these problems acknowledged. On re-reading earlier pages, there are so many problems that I've now forgotten about, largely because other problems are more serious, or just easier to explain. I'm not nearly up to the job of keeping all the problems with PACE in my head at one time, and doubt that anyone is at this point.

 

[Dolphin]

Guess what happened seven years ago today?: May 12, 2010

That's right, it's this threads 7th Birthday!!


Was that deliberately done on ME awareness day, or just an amazing coincidence?

Coincidence

This celebration of turning 7 is just in time for the #millionsmissing campaign.

Can anyone here can think of a better way to spend seven years, than pointing out the problems with the PACE trial? Not I.

That was the answer I used to give when people asked me as a child what I wanted to do when I grew up.

Well done all.

 

[Esther12]

That was the answer I used to give when people asked me as a child what I wanted to do when I grew up.

LOL. Living the dream.

 

[slysaint]

Just found this Accepted/In press - 8 May 2017
https://kclpure.kcl.ac.uk/portal/en...me(a50c287c-17da-4f9b-94f4-2d3ec0851eea).html

no idea what it is

"
Tutorial: Simplex, latent growth and latent change structural equation models for longitudinal mediation in the PACE trial of treatments for chronic fatigue syndrome
Contribution to journal › Article

Kimberley Ann Goldsmith ; David MacKinnon ; Trudie Chalder ; White Peter ; Michael Sharpe ; Andrew Pickles
"

eta: started reading it

 

[RogerBlack]

no idea what it is

"

Let's start out with one wholly positive comment.
It's open access.
https://kclpure.kcl.ac.uk/portal/fi...et_al_Psych_Meth_Tutorial_author_accepted.pdf
https://kclpure.kcl.ac.uk/portal/fi...al_supplementary_material_author_accepted.pdf

 

[slysaint]

Got this far:
"
We use the “Pacing, Graded Activity, and Cognitive Behavioral Therapy: A Randomized
Evaluation” (PACE) trial of rehabilitative treatments for chronic fatigue syndrome (ISRCTN 54285094) as a motivating example and describe how to fit and interpret various longitudinal mediation models using simulated data similar to those in the PACE trial."
"
As always, a cautious reasoned case should be made before giving selective
prominence to one post-hoc preferred set of results, and full transparent reporting is required."

eta: someone with a more functioning brain needs to interpret this
@JaimeS @Dolphin

 

[RogerBlack]

Let's start out with one wholly positive comment.
It's open access.
https://kclpure.kcl.ac.uk/portal/fi...et_al_Psych_Meth_Tutorial_author_accepted.pdf
https://kclpure.kcl.ac.uk/portal/fi...al_supplementary_material_author_accepted.pdf

This is a largely irrelevant paper.
It creates a simulated dataset (not PACE) and then teaches you how to analyse it.
It is relevant to the recently published secondary mediation analysis, perhaps.

They comment mostly on the PACE main publications, other than statistical ones, and other than remarks made in passing which entirely parrot the party line and omit any criticism at all, this is a tutorial which does not contribute anything to our understanding of the authors. (or, indeed CFS).

It might in principle explain some errors in the mediation analysis paper, if those errors were to be found.

I am unsure how this simulated data is tied to the real data.

 

[Chrisb]

@slysaint You got further than I did.

I got as far as "latent growth" and decided there was a cancer at the centre of the research.

 

[trishrhymes]

I'm inflicting on myself cruel and unusual punishment - I've started trying to read this 55 page document!

I've just stopped at this gem:

'As always, a cautious reasoned case should be made before giving selective prominence to one post-hoc preferred set of results, and full transparent reporting is required.'

Only to discover that in the meantime @slysaint had just beaten me to it.

While I scrape my jaw of the floor at the effrontery of the Pace idiots holier than thou statement, I ask myself, shall I go on. This is on page 7 of the 55 pages.

 

[Barry53]

I'm inflicting on myself cruel and unusual punishment - I've started trying to read this 55 page document!

I've just stopped at this gem:

'As always, a cautious reasoned case should be made before giving selective prominence to one post-hoc preferred set of results, and full transparent reporting is required.'

Only to discover that in the meantime @slysaint had just beaten me to it.

While I scrape my jaw of the floor at the effrontery of the Pace idiots holier than thou statement, I ask myself, shall I go on. This is on page 7 of the 55 pages.

The phrase "Comedy of Errors" comes to mind.

 

[trishrhymes]

Page 10:

'In order to avoid bias in estimating a mediated effect, several other assumptions must hold. We assume (a) reliably and validly measured variables, (b) linear relationships between variables,'

So that excludes PACE at the starting line.

 

[Barry53]

Page 10:

'In order to avoid bias in estimating a mediated effect, several other assumptions must hold. We assume (a) reliably and validly measured variables, (b) linear relationships between variables,'

So that excludes PACE at the starting line.

Quite. 'a' for certain, and though I cannot be sure, I'd be amazed if 'b' held true for PACE, especially given all the subjectivity inherent in them anyway,

 

[slysaint]

several other assumptions must hold

seems as tho a lot of it is based on assumptions..............
but I haven't read it all; so I'm also making an assumption