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"Once again, the PACE authors respond to concerns with empty answers" - JHP by David Tuller

Yogi

Senior Member
Messages
1,132
Great article. David Tuller is on fire here!

All brilliant but two of the best bits.
Yet the claims in these publications also fall short in transparency and common sense. White, for example, wrote a Guardian commentary last fall after an independent group reanalyzed the recovery data and found null results (Matthees et al., 2016). In the commentary, White complained that the researchers had made “tweaks” to the outcome measures that made it harder for trial participants to achieve recovery thresholds (White, 2016). White failed to mention that those “tweaks” were simply the stricter recovery methods he and his colleagues had themselves promised in their protocol, and later abandoned. In other words, the reanalysis did not “tweak” anything—rather, it corrected the scientific record by un-tweaking the investigators’ own post hoc, unauthorized tweaks. These criteria changes had yielded 22 percent recovery rates for GET and CBT, rather than null results found in the reanalysis.


White also recently told The BMJ that it was unfair of critics to compare the high improvement rates from the Lancet paper with the lower improvement rates calculated from the protocol definition (Hawkes, 2016).“They’re comparing one measure with a completely different one — it’s apples and pears,” White said. Indeed it is. White and his colleagues took 5 million pounds in government funds and promised to bring back apples from the market. Instead they brought back pears, refusing to show anyone the apples they had rejected. Given the resources involved, it should not be hard to understand why people would want to examine those apples for themselves, to make their own comparisons with the pears and draw their own conclusions about whether their 5 million pounds were spent wisely. The investigators appear to view this public interest in accountability for public money as confusing or even offensive.

He is rightly so concerned about the misuse of UK taxpayers fund, even as a US citizen.
Why are UK taxpayers and MP's not fuming given the parlous state of public finances and austerity??

This should be the next step. A Parliamentary Inquiry as suggested by @charles shepherd in his commentary.
 

Large Donner

Senior Member
Messages
866
He is rightly so concerned about the misuse of UK taxpayers fund, even as a US citizen.
Why are UK taxpayers and MP's not fuming given the parlous state of public finances and austerity??

Because the £5 million spent on the PACE trial is an exercise in saving billions on disability payments for both the government and Insurance companies.

Its a brand that they are growing and think they an throw a "CFS" MUS etc blanket over more and more patients.
 

CCC

Senior Member
Messages
457
Not all.
Too many though.
In Australia, I would say almost all.

Back in the 1960s, Kim Beazley senior decided he would never lie again. He was told his career as an Australian politician would be over. It wasn't, but I can't think of too many who have tried it since.

(His son is the other Kim Beazley who was once leader of a political party in opposition).
 

slysaint

Senior Member
Messages
2,125
Its a brand that they are growing and think they an throw a "CFS" MUS etc blanket over more and more patients.
From the PACE cost analysis:
"This study has found that CBT and GET are cost-effective options for treating patients with CFS. However, for patients to benefit from these therapies there needs to be investment to provide the staff trained to deliver them."

And this is exactly what's happening.........although they have now extended it to MUS and, thanks to SW et als drive to get the Govt to adopt the BPS model for all healthcare and supposedly 'remove the stigma of mental illness', it is all perfectly 'justified'.

eta: and it's spreading.
 

user9876

Senior Member
Messages
4,556
From the PACE cost analysis:
"This study has found that CBT and GET are cost-effective options for treating patients with CFS. However, for patients to benefit from these therapies there needs to be investment to provide the staff trained to deliver them."

And this is exactly what's happening.........although they have now extended it to MUS and, thanks to SW et als drive to get the Govt to adopt the BPS model for all healthcare and supposedly 'remove the stigma of mental illness', it is all perfectly 'justified'.

eta: and it's spreading.

But their cost model doesn't include training costs or the lack of supply of therapists pushing costs up. If I remember their results were pretty marginal anyway.
 

trishrhymes

Senior Member
Messages
2,158
A trial that does not lead to any significant long term benefits for patients by definition is not cost effective, since the treatment doesn't work.

Oh, hang on a minute, of course it's cost effective because it:

a) gets heart sink patients out of their GP's hair

b) give an excuse not to pay disability benefits or insurance payouts.

Job done.

:bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
 

user9876

Senior Member
Messages
4,556
A trial that does not lead to any significant long term benefits for patients by definition is not cost effective, since the treatment doesn't work.

Oh, hang on a minute, of course it's cost effective because it:

a) gets heart sink patients out of their GP's hair

b) give an excuse not to pay disability benefits or insurance payouts.

Job done.

:bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:

They collected economic data with the long term follow up of PACE but have yet to publish.
 

Esther12

Senior Member
Messages
13,774
But their cost model doesn't include training costs or the lack of supply of therapists pushing costs up. If I remember their results were pretty marginal anyway.

I never really understood the details of this, but I don't know much (anything?) about health economics. They were costing CBT/GET at dramatically less then what health authorities were being charged to send patients to a CFS centre for CBT/GET, but I think that this was meant to account for training and pension costs too.

@Tom Kindlon did a comment on that here:

http://journals.plos.org/plosone/ar...notation/a8885639-df48-41bd-8dd9-2dcfad623fb6

There'd been discussions about it on PR too, but I felt that I never really had a firm grip on how they were trying to justify their figures.
 

Esther12

Senior Member
Messages
13,774
I'm sure they've talked about likely needing more time to show the benefits of CBT/GET on employment outcomes. I thought that they'd been more explicit than in this response relating the the 2013 recovery paper somewhere, but I can't remember where:

Economic data, such as sickness benefits and
employment status, have already been published by
McCrone et al.(2012). However, recovery from
illness is a health status, not an economic one, and
plenty of working people are unwell (Oortwijn
et al. 2011), while well people do not necessarily work.
Some of our participants were either past the age of
retirement or were not in paid employment when
they fell ill. In addition, follow-up at 6 months
after the end of therapy may be too short a period
to affect either benefits or employment. We therefore
disagree with Shepherd (2013) that such outcomes
constitute a useful component of recovery in the
PACE trial.

https://www.whatdotheyknow.com/requ...tach/3/Recovery paper correspondence 2013.pdf
 

BurnA

Senior Member
Messages
2,087
I really like this

Indeed, the investigators appear perplexed that anyone would think of comparing the two sets of results. “It is no surprise,” they write, “that fewer participants are regarded as improved if more stringent criteria are applied.” By the same logic, it could have been “no surprise” to the PACE investigators themselves that more participants would be “regarded as improved”—and therefore reported as “improved” in their Lancet paper—if they substituted less stringent criteria to measure improvement rates in the trial.