Discussion in 'General ME/CFS News' started by Skycloud, Mar 22, 2018.
Very short, but clear presentation of the new paper's findings. Comment from Carolyn Wilshire, The ME Association and Dr Jon Stone
Sharpe Chalder and Goldsmith are given the last word.
What I expected from the BBC, and better than we've had in the past.
I like "Goalposts 'moved'" as a subheading.
edit - grammar and spelling
The BBC didn't seem to make much use of the SMC "factsheet", which is encouraging?
It's also covered in The Times -
Findings of £5m ME chronic fatigue study ‘worthless’
Thanks for finding these, everyone!
What a great go-to place this is if you want to find out what's going on the area. Its works like a kind of "hive mind", gathering all the information together...
The study has now made it onto the SMC website -
Reanalysis of the PACE trial
I suspect that is a huge fudge. I cannot imagine that all the trial methodology strategies that people like @Jonathan Edwards have been clarifying for us here, have only just been understood in the last decade or so! Although much of it has been enlightening to me in recent times, for those involved in clinical trials it must have been bread and butter for a long time. And in any case, it is still a tacit admission PACE got it wrong.
Funny how the SMC always seems to take a particular stance . Though they do seem to be very much on the back foot here .
The thought that has just occurred to me is that, not so long ago, this wouldn't have been news. And the fact that the SMC are scrambling so hard to counter the truth being told shows how much progress has been made.
That's complete and utter horseshit.
There'd been tons of studies about selective reporting - it was already a huge scandal, years before PACE.
Spin. Spin. Twirl.
They can't be serious? Pull the other one! The problems of selective reporting was why databases of trial protocols were set up in the first place.
The changes were not well justified hence the constant criticism.
Besides, when people make mistakes, they should admit it and apologise, not continue to contort and defer criticism.
Why do they not want to bridge the gap with the community and make amends?
More spin. How is the protocol specified measures "extreme analysis"?
Those trialists have had years to tell us when and why. We have been asking since the original publication and they continue to ignore us.
Yes, and strangely enough the other studies often suffer from the same problems - deviations from protocol and more importantly: no blinding and either lack of objective measures (actigraphy, neuropsychological testing, employment outcomes) or lack of change on these measures. All this means is this evidence is merely suggestive and not at all conclusive as it is not the gold-standard double-blinded or unblinded study with strong (hard to bias) objective outcomes.
They twist and they twist and they twist.
Can they really not hear themselves?
The PACE trial was designed in 1692 during the Salem witch trials. I'm sure this is an accurate assumption, I'll go look for a citation.....be right back..
I thought trial registration was invented back during the European renaissance?
CONSORT says they are required to give reasons but the reasons they gave were along the lines of "we felt like it".
And the Daily Mail -
Findings of chronic fatigue study `not reliable´
This is an excellent article - and refreshingly includes no horseshit from the SMC.
Comments are disabled, sadly - it would have been good to praise the journalist. But please do click through to demonstrate to the editor that people are interested in this story.
No mention of the DWP involvement though.....
Simon Wessely gave the game away when he more or less said they had changed the outcomes so that the results "would be consistent with earlier trials".
This is bad science by definition.
We can deduce the story - the group allocation is still blinded, but they can still look at the data for the patients who have completed the initial trial and realise that change is minimal patients are still severely ill. So they decide to water down the thresholds before the allocation is unblinded. The timeline of the protocol changes bares this out - they had five years worth of data, which could be viewed, albeit with group allocation still blinded before they decided to change their outcome measures.
(PACE): statistical analysis plan
"First participant was randomised on 18 March 2005"
"Date of Last Randomisation: 28 November 2008"
"planned analyses that were approved by the Trial Steering Committee in May 2010"
"The anchoring date for visits and assessments is randomisation; thus 24 weeks refers to 24 weeks from randomisation."
Patients were followed up at around 52 weeks after allocation.
anyone tried a Google search on PACE trial recently............
Voices from the Shadows shared David Tuller's post.
9 hrs ·
A sane counter-point to the SMC's devious manipulations and lies. Many thanks to all those involved in writing this.
14 hrs ·
I am honored to be included as a co-author on this study that debunks the PACE "improvement" and "recovery" findings, as well as the bogus "follow-up" study. If science worked as it should, this paper would be the end of the bogus CBT/GET paradigm and the increasingly desperate efforts of the CBT/GET ideological brigades to save their careers. Unfortunately, science is broken in this domain of investigation. Hopefully that will change in the near future.
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