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Andrew Gelman The PACE trial and the problems with discrete, yes/no thinking

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Perhaps that post is over the character limit for comments Kyla. Or if Andrew personally reviews/moderates all comments himself before publishing, perhaps he's saving that one up for bedtime reading. :D
Haha...fair enough. It is rather too long. I spent a long time on it which is why I was rather peeved it didn't go through.

the other comments I submitted were on previous blog posts, and were posted a while ago. I checked today and they are still not up. I think I have been spam filtered. just occurred to me it might be my ad-blocker causing trouble. But I think I am done trying. ...otherwise I might become the 'vexatious' poster who keeps submitting the same thing ;)
 

Woolie

Senior Member
Messages
3,263
Good comment by someone called "Zach" (who also made some good comments before, IIRC):

http://andrewgelman.com/2016/01/06/...olve-reverse-causal-questions/#comment-257824
Yea, nice point here from Zach, I didn't know that:
Zach said:
However, data for the walking test was missing for a third of GET participants at 52 weeks and, without any explanation for the missing data, it seems reasonable to question whether some participants may have avoided the test for reasons related to capacity to participate, thus inflating the available data for the GET group.
Who is this guy? If you're reading this Zach, we'd love to have you here!

Also really good post from someone called Leveller. I like this point:
Leveller said:
I saw the Horton quote as a reflection of the pragmatic way in which patients with CFS are managed by UK medical staff. An important part of the biopsychosocial approach is to provide a model of illness to patients in which they are encouraged to believe that they have a condition which is reversible through rehabilitation, instead of having doctors be honest about the poor quality of research and evidence in this area. You’re quite right that PACE cannot be used to justify truth claims about the nature of CFS, but when patient cognitions are medicalised, informed consent can go out the window.
 

Cheshire

Senior Member
Messages
1,129
Here it is: http://andrewgelman.com/2016/01/13/pro-pace/

Pro
Simon Wessely, a psychiatrist who has done research on chronic fatigue syndrome, pointed me to an overview of the PACE trial written by its organizers, Peter White, Trudie Chalder, and Michael Sharpe, and also to this post of his from November, coming to the defense of the much-maligned PACE study

Anti
All of the above seemed reasonable to me, so then I followed the link to the open letter by Davis, Edwards, Jason, Levin, Racaniello, and Reingold criticizing PACE.

Conclusion...
From my perspective, when I wrote about the PACE study hurting the reputation of the Lancet, I was thinking not so much of the particular flaws of the original report, or even of that incomprehensible mediation analysis that was later published (after all, you can do an incomprehensible mediation analysis of anything; just because someone does a bad analysis, it doesn’t mean there’s no pony there), but rather the Lancet editor’s aggressive defense and the difficulty that outsiders seemed to have in getting the data. According to Wessely, though, the study organizers will be sharing the data, they just need to deal with confidentiality issues. So maybe part of it is the journal editor’s communication problems, a bit of unnecessary promotion and aggression on the part of Richard Horton.

To get back to the treatments: Again, it’s no surprise that CBT and exercise therapy can help people. The success of these therapies for some percentage of people, does not at all contradict the idea that many others need a lot more, nor does it provide much support for the idea that “fear avoidance beliefs” are holding back people with chronic fatigue syndrome. So on the substance—setting aside the PACE trial itself—it seems to me that Wessely and the critics of that study are not so far apart.

Huumm... ?
 
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Jonathan Edwards

"Gibberish"
Messages
5,256

I have not read it all through in detail but it looks as if Gelman has really totally missed the point. Maybe this is the real problem, that so many people simply do not understand what is required for the generation of reliable information. It seems to be only a matter of common sense. The view I have built up depends in large part to simple matter of fact comments by people like Esther12 and Tom K. it really isn't that hard as I see it, but...

Huumm...?
 

A.B.

Senior Member
Messages
3,780
Maybe this is the real problem, that so many people simply do not understand what is required for the generation of reliable information.

I have again left a comment, even with a reference to homeopathy and placebos that should make the problem obvious.

I think it's interesting that he still doesn't seem to understand. Maybe one paragraph posts just won't do. Maybe we need a long blog post, detailing all the ways bias can influence results, and examples from other studies or experiments that show just how large bias can be.

Could it be a case of "placebos are magic healing effects, so being no better than placebos is totally okay, especially if these psychiatrists say there's a large cognitive component to the illness"?

I really wonder why this information just doesn't get through.
 

Yogi

Senior Member
Messages
1,132
I have again left a comment, even with a reference to homeopathy and placebos that should make the problem obvious.

I think it's interesting that he still doesn't seem to understand. Maybe one paragraph posts just won't do. Maybe we need a long blog post, detailing all the ways bias can influence results, and examples from other studies or experiments that show just how large bias can be.

Could it be a case of "placebos are magic healing effects, so being no better than placebos is totally okay, especially if these psychiatrists say there's a large cognitive component to the illness"?

I really wonder why this information just doesn't get through.

Maybe we should ask him if he wishes to come onto PR to discuss further.
 

adreno

PR activist
Messages
4,841
I think he simply hasn't bothered reading neither the original study, nor the critiques by Tuller and Coyne. In short, he is talking out of his ass.
 

Valentijn

Senior Member
Messages
15,786
I think he simply hasn't bothered reading neither the original study, nor the critiques by Tuller and Coyne. In short, he is talking out of his ass.
I think it's more an issue of Wessely figuratively seducing him. Wessely is extremely charismatic, and has a lot of experience in hiding the weaknesses in BPS research and making their bullshit sound factual.
 

Cheshire

Senior Member
Messages
1,129
This is also worrying:

Indeed, when I asked Wessely what he thought of this, he replied that an independent review group in a different country had already re-analyzed some of the data and would be publishing something soon. So maybe we’re closer to convergence on this particular study than it seemed.

So if this is true, the "independent" review of the data is yet engaged, with a group the PACE team agreed to share the data with. Not a good sign, they know enough people that would be ready to happily do the job. And there are several countries where that could take place. (My bet is on the Netherlands.)
 

Esther12

Senior Member
Messages
13,774
I wonder if Gelman started blogging on this too early. It sounds like he just doesn't understand some of the key issues yet, and maybe is a bit nervous that he went too far earlier? I hope he keeps digging. tbh, I thought that Wessely's blog was so bad that I'm amazed anyone could be remotely impressed by it - it was just evasive reassurance. Also, that Gelman sees the "back to normal"/recovery claims as a side-issue surely reflects that he was not interested when results were first being promoted, and does not understand the politics of this: it's the key issue. Did it sound like Gelman hadn't realised that there had been a PACE recovery paper?