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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I think calling these treatment effects “moderate” is defensible. 21% of the symptoms is certainly not a large fraction, but nor is it a trivial one. I’d call it small-to-medium.
There’s a caveat, though. The Chalder Fatigue Scale and most of the other PACE outcome measures were subjective, self-report scales. As I’ve said before, these have limitations; in this case they might well be susceptible to placebo effects.
There was one more-or-less “objective” outcome measure in the released PACE dataset, namely ‘meters walked’ (in 6 minutes). Concerningly, CBT was no better than the control group on this outcome (p=0.807). GET did produce benefits but this is perhaps unsurprising because walking was one of the main exercises that formed part of that treatment, so whether GET had any ‘generalized’ effects over placebo is also uncertain.
In my view the critics are right: the revised criteria are almost certainly too broad. For one thing, I noticed that some of the patients in the dataset already met many of the ‘recovery’ criteria at the start of the trial, which is clearly problematic. I don’t think the revised criteria match with the everyday meaning of the word ‘recovery’ i.e. the absence of all or virtually all symptoms.
Muted article by Neuroskeptic. If a pharma trial had engaged in post hoc outcome switching and ended up with recovery criteria that overlapped with entry criteria he'd be up in arms about it. I think CBT and exercise are perceived as harmless no risk treatments by normal people so they can't understand why patients are so upset by the low quality research.
Wow, I am surprised and disappointed to see this from Neuroskeptic. Here is my latest take on Simon Wessely's defense of the PACE trial.
https://jcoynester.wordpress.c...
A follow up will discuss the outcome switching that went on. I think that Neuroskeptic has been mislead or is simply confused. The outcome switching occurred after data was collected. The original protocol was submitted later.
Most importantly, the PACE investigators had access to the sister FINE trial before they decided to switch their outcomes. If this were a Pharma trial, I am sure Neuroskeptic would join me in crying foul. But I chalk up the confusion to his having been misled.
Conflicts of interest
But the results of the trial also suited the aims of the Department for Work and Pensions (DWP), who part funded the trial, and the medical insurance industry which have connections to the PACE trial via the researchers. Four of them declared working for the insurance industry in a conflicts of interest statement: Professors Peter White, Trudie Chalder and Michael Sharpe and physiotherapist Jessica Bavington.
The DWP is particularly keen on psychological explanations, a.k.a the bio-psychosocial (BPS) model for chronic ill health. Professor Tom Shakespearesays, in the Disability News Service, BPS “played a key role” in the narrowing of eligibility criteria for disability benefits such as Employment and Support Allowance (ESA). Shakespeare goes on to say BPS is used to “underpin increasingly harsh and at times punitive measures targeted at disabled people”, in an attempt by the government to cut the number of people receiving ESA.
Same can be said of the Daily Express, or the Guardian, or any mainstream newspaper. The only newspapers that I don't dismiss as hopelessly biased are those which share my biases. They're always worth a read. If only more people read them.it's indisputable that there are many people who see the publication of a story on The Canary as an invitation to dismiss it as a load of old bollocks.
They didn't include VAT with the cost of QMUL fighting the appeal (so it was £250,000 in total, not £200,000) and I'd disagree slightly with their description of APT (the PACE team exaggerate the similarities between APT and patients' 'pacing' imo):
Saint Peter - I like that. And I've learnt a new word because I had to look up "unctuous".
Interesting that its also a four letter word. Have we discovered a new obscenity?This research is flawed... but it's not PACE-bad" - #PACEtrialbeing used as shorthand for rubbish research.https://www.mailman.columbia.edu/public-health-now/news/not-so-fast-mailman-biostatisticians-raise-concerns-over-cancer-screening-study …
6:40 PM - 2 Oct 2016
http://www.urbandictionary.com/define.php?term=Pull a PACEPull a PACE
To manipulate data and research in a way reminiscent of the spin which surrounded the PACE trial, as was detailed in "Methodological Inconsistencies in the PACE trial for ME/CFS" and elsewhere.
"When I was young and idealistic, I never thought that I would ever pull a PACE."
"The BMJ's new report upon misconduct in UK research shows that pulling a pace isn't that uncommon."
"No-one would have wanted to pay me for my treatments unless I had pulled a PACE."
#spin #misleading #fraud #research #statistics
by Chalder January 16, 2012
http://www.urbandictionary.com/define.php?term=Pull a PACE