PACE Trial and PACE Trial Protocol

A.B.

A.B.

Senior Member
Messages
3,780
If you don't understand this whole placebo, bias and blinding thing then you're going to eventually come up with bizarre treatment ideas which you falsely believe to be effective.

The people involved in the PACE trial and their friends seem to have problems understanding these things.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
A.B. said:
If you don't understand this whole placebo, bias and blinding thing then you're going to eventually come up with bizarre treatment ideas which you falsely believe to be effective.

The people involved in the PACE trial and their friends seem to have problems understanding these things.
Click to expand...

I'm sure Simon Wessely, Peter White and Michael Sharpe understand the placebo effect, bias of unblinded trials, therapist effect etc perfectly well. That's why they made the primary outcomes subjective and highly prone to influence - they had, as Wessely put it, a final destination in mind when they launched the ship that was PACE.

I suspect they were surprised at how ineffective PACE turned out to be, despite all their efforts to influence patients and select a large proportion of non ME depressed patients. That's why, to quote Wessely again (approximately), they had to alter course midway to make sure they reached the desired destination. In order to reach the required result they had to ditch the actometers and change the recovery criteria. So they did. That is unforgivably criminally irresponsible - not ignorance, but wilful, malicious intent to prop up their own careers. They can sue me if they like.

On the other hand, I suspect some of the psychologists who have no medical training and are lower in the status hierarchy than the big god psychiatrists, believe what they are told. Some of them strike me as being either thick or incredibly credulous.
 
BruceInOz

BruceInOz

Senior Member
Messages
172
Location
Tasmania
Barry53 said:
Just seen this quote by Richard Feynman, and it seems so very applicable thought I'd post it here:-

"I would rather have questions that can't be answered than answers which can't be questioned."

Boy did he get that right!
Click to expand...
Being a theoretical physicist myself, Richard Feynman has always been something of a hero of mine. This quote reminded me of another of relevance to the PACE saga that I once posted here somewhere:

Richard Feynman said:
The first principle is that you must not fool yourself — and you are the easiest person to fool.
Click to expand...

But, in looking it up on wikiquote, I found a longer quote that expands somewhat on the ideas behind the "fool yourself" quote and really sums up what is wrong with PACE (note that the modern translation of "cargo cult science" would be "pseudoscience"):

Richard Feynman said:
There is one feature I notice that is generally missing in cargo cult science. … It's a kind of scientific integrity, a principle of scientific thought that corresponds to a kind of utter honesty — a kind of leaning over backwards. For example, if you're doing an experiment, you should report everything that you think might make it invalid — not only what you think is right about it; other causes that could possibly explain your results; and things you thought of that you've eliminated by some other experiment, and how they worked — to make sure the other fellow can tell they have been eliminated.
Details that could throw doubt on your interpretation must be given, if you know them. You must do the best you can — if you know anything at all wrong, or possibly wrong — to explain it. If you make a theory, for example, and advertise it, or put it out, then you must also put down all the facts that disagree with it, as well as those that agree with it. There is also a more subtle problem. When you have put a lot of ideas together to make an elaborate theory, you want to make sure, when explaining what it fits, that those things it fits are not just the things that gave you the idea for the theory; but that the finished theory makes something else come out right, in addition.

In summary, the idea is to try to give all of the information to help others to judge the value of your contribution; not just the information that leads to judgement in one particular direction or another.
Click to expand...
(Bolding and hyperlinks from https://en.wikiquote.org/wiki/Richard_Feynman)
 
A

anni66

mum to ME daughter
Messages
563
Location
scotland
slysaint said:
A few 'highlights'

"It’s extraordinary that 16 papers would come out of a single psychotherapy trial. The authors seem to be pointing to that as an accomplishment, but for others who are concerned with broader issues, it raises issues about duplicate publication and the integrity of the peer review under which those 16 papers were published."

"Their citing of Action for ME (2011) is inappropriate for a number of reasons. It’s an unrepresentative that was not subject to peer review. The claims that patients believe their treatments lead to improvement of contradicted by the extraordinary petitions signed by thousands."

"Advocates for the improvement of the trustworthiness of the psychological literature should be particularly offended by the distorted view offered in their point (3). They are dodging the very important issue of not only investigator allegiance, but investigator conflict of interest."

"...the authors abandoned their protocol and a substantial portion of the patients available for the follow-up were no longer receiving the treatment to which they were assigned."

"The authors substantially misrepresent the use of Freedom of Information Act requests and their response to them. They exaggerate the number of requests that were made by counting multiple times any request that involved multiple variables....They misrepresent the multiple times they’ve invoked the excuse that people who requested the data were vexatious."

"I find it odd that they retreat to a blog post by Simon Wessely as a defense of their many methodological problems."

"Their excuse that they do not release their data because the consent forms do not allow it was argued in proceedings that cost them over 250,000 pounds"
Click to expand...
Cost the taxpayer £250,000
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
BruceInOz said:
But, in looking it up on wikiquote, I found a longer quote that expands somewhat on the ideas behind the "fool yourself" quote and really sums up what is wrong with PACE (note that the modern translation of "cargo cult science" would be "pseudoscience"):
Click to expand...
Extract from the Richard Feynman quote who said:
There is also a more subtle problem. When you have put a lot of ideas together to make an elaborate theory, you want to make sure, when explaining what it fits, that those things it fits are not just the things that gave you the idea for the theory; but that the finished theory makes something else come out right, in addition.
Click to expand...
[My bold]

Everything PACE seems to avoid this principle like the plague. If Richard Feynman were still around, his observations on PACE would be interesting I think.
 
BruceInOz

BruceInOz

Senior Member
Messages
172
Location
Tasmania
Barry53 said:
Everything PACE seems to avoid this principle like the plague. If Richard Feynman were still around, his observations on PACE would be interesting I think.
Click to expand...
Yes, I think the proper interpretation of his quote is that he would call it "cargo cult science", a term that Feynman coined. Interestingly, Wikipedia says the following about cargo cult science: (https://en.wikipedia.org/wiki/Cargo_cult_science)

Wikipedia said:
... cargo cult scientists conduct flawed research that superficially resembles the scientific method, but which fails to produce scientifically useful results.
Click to expand...

Yes, that does sound like PACE and today we call it pseudoscience.
 
D

Dolphin

Senior Member
Messages
17,567
You must log in or register to reply here.
Back