Media coverage of Matthees PACE recovery reanalysis: post links here

wdb

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A bit of a mixed bag...

Neuroskeptic: Open Data and CFS/ME – A PACE Odyssey Part 1
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.
 

Sidereal

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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.
 

user9876

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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.
I wonder if drug companies are noting all the excuses made for PACE to repeat them. Probably not because these days they work in a tight regulatory framework and wouldn't be allowed to get away such acts.
 

CFS_for_19_years

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The comments to the Neuroskeptic article have been very good, with Julie Rehmeyer replying several times, and James Coyne shows up too:
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.
My recommendation: even though the article itself is meh, the pushback is very strong, no trolling.
 

Yogi

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The Canary

The results they really didn’t want you to see: key ME/CFS trial data released


http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/

Here is the Twitter link. Please retweet widely.

Breakthrough
This is the first UK news media outlet to cover PACE fraud. And it has covered it so well.


Background
Canary is a new news organisation set up 1 year ago "here to disrupt the status quo of the UK and international journalism, by creating content that compels audiences to view the world differently".

This will now lead to the more traditional mainstream UK media to cover this.

Great section on conflicts of interest

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.
UK breakthrough - new thread here:

http://forums.phoenixrising.me/inde...y-me-cfs-trial-data-released-october-2.47164/
 
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worldbackwards

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I'm slightly conflicted about being adopted by The Canary. On one side, they do have a very large (if narrow) reach and I've recently heard reports that they have more hits than New Statesman or The Spectator. On the other, they have the reputation of being of a slightly tin-foiled hue, and 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.

None of which is to detract from the story (which I haven't read) or the journalist, who would find it hard to get it looked at elsewhere, but unfortunately it is probably of limited utility.
 

TiredSam

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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.
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.
 

Esther12

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Also, the Canary report looked good. If some are skeptical of the source, hopefully that will encourage them to check the facts and see that they're accurate.

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):

"The therapies under investigation were adaptive pacing therapy (APT) similar to an informal pacing strategy commonly used in CFS"

I may have missed other tiny issues, but it looked like something that would hold up well under critical examination.
 

Yogi

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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):

This made me smile @Esther12 :thumbsup:and laugh especially after feeling so upset and angry recently at the CMRC MEGA project last week. Thanks!!!!!

What a breakthrough and shows how far we have come in the last year that when ME articles are now coming out one of the big mistakes we can find is the correct tax treatment of Value Added Tax (VAT) on legal fees.

I remember the days when whole news articles on this illness were a pack of lies and had nothing to do with ME.

Historic
 

Large Donner

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