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

[A.B.]

One of the things I was trying to wrestle with in my post was the distinction between what was found in the PACE study and what was claimed. It seemed to me that much of the criticism of the PACE investigators was that they overstated what they found. Is it possible that there were small improvements on the continuous-scaled measure, but not the “recovery” that was stated or implied at various times? That would be consistent with the idea that these treatments could be helping some people (after all, CFS is a broadly-defined syndrome, so it should be no surprise that CBT and physical therapy could help some of them) but without the clear resolution implied by Richard Horton.

Oh dear. I think I give up. He doesn't seem to the understand that small improvements on subjective outcomes are exactly what should be expected in an unblinded homeopathy trial. That these are there doesn't mean there must be a working treatment somewhere in there. In principle it's not impossible but the rest is more consistent with a null result than anything else... and one way to find out if there had maybe been some people for whom the therapy worked well is individual data, which the authors are refusing to publish.

 

[Bob]

Good comments still being posted, including the latest one by 'K':
http://andrewgelman.com/2016/01/13/pro-pace/#comment-259409

It's nice to see such an intelligent and informed discussion being played out. It seems that responding to someone who is ignorant of the issues but sympathetic to the community, open minded, and genuinely interested in hosting an honest discussion, brings out the best in the community. If only these comments were part of the medical literature, or part of the mainstream discussions re ME/CFS. They include a wealth of honest and insightful knowledge. It's a glimpse of what things could be like if patients got a fair hearing and the field wasn't corrupted.

 

[Kyla]

Good comments still being posted, including the latest one by 'K':
http://andrewgelman.com/2016/01/13/pro-pace/#comment-259409

It's nice to see such an intelligent and informed discussion being played out. It seems that responding to someone who is ignorant of the issues but sympathetic to the community, open minded, and genuinely interested in hosting an honest discussion, brings out the best in the community. If only these comments were part of the medical literature, or part of the mainstream discussions re ME/CFS. They include a wealth of honest and insightful knowledge. It's a glimpse of what things could be like if patients got a fair hearing and the field wasn't corrupted.

That was me.

Wasn't trying to be shady with the single letter, I changed my name from my usual moniker when I was trying to figure out why my comments weren't going through.
Never did figure it out but they now go through immediately. (And I think the old ones all showed up at some point)

 

[Bob]

@Kyla (aka the mysterious 'K'), great comment. Glad you're able to post now.

 

[worldbackwards]

I changed my name from my usual moniker when I was trying to figure out why my comments weren't going through.

Clearly a known troublemaker.

 

[Kyla]

Clearly a known troublemaker.

You can call me 'Vexatious K'

it's like 'Tenacious D' ...except less cool

 

[CFS_for_19_years]

That was me.

Wasn't trying to be shady with the single letter, I changed my name from my usual moniker when I was trying to figure out why my comments weren't going through.
Never did figure it out but they now go through immediately. (And I think the old ones all showed up at some point)

A zillion "Likes" for your comment, amidst thunderous applause, balloons and a trophy!

 

[eafw]

It's really normal for people who come fresh to a controversy with two opposing sides to start from the assumption that the truth is probably somewhere in the middle. .

I find the "somewhere in the middle idea" is particularly odd in a scientific inquiry. He also is tripping up over the "both sides of the story" fallacy, and being taken in by Wessely's spin

He's spinning around in confused little circles. Because Wessely spun him

Wessely is a master at this, it works on the naive and un-informed (or those who automatically give credibility to fellow academics ?) but if people stop and really examine it then it becomes very easy to see through.

I thought this comment was worth looking at since it's so weird.

It's not very clearly written, but some sense can be made of it. I'd guess this is someone who enjoys having a go at ME patients ("prepare yourself for a rapid fall in popularity amongst that constituency.") but also recognises the rather corrupt CBT empire building that has been going on in the NHS for sometime and is not happy about it and the impact on their own career or grants.

 

[eafw]

Ah well. I've left a comment.

"The naked emperor that the PACE trial represents has been running down the street quite long enough."

Excellent.

 

[A.B.]

It's not very clearly written, but some sense can be made of it. I'd guess this is someone who enjoys having a go at ME patients ("prepare yourself for a rapid fall in popularity amongst that constituency.") but also recognises the rather corrupt CBT empire building that has been going on in the NHS for sometime and is not happy about it and the impact on their own career or grants.

We need to be aware of the possibility of winning against the Wessely school and CBT and GET, only to have some other psychoquackery take their place.

That's one reason why it is important to expose the concept of psychogenic illness as pseudoscientific nonsense. Labelling a problem as psychogenic is a simple and convenient solution for bureaucracies, and a career opportunity for psychiatrists. For us patients it's a dead end.

That this poster is critical of the Wessely school doesn't mean that he's our friend. It might just be a proponent of central sensitization, or someone who thinks psychotherapy just needs to be disguised better to work.

PS: the line of "making treatments more acceptable to patients" is also a way to rationalize the failure of the treatment and saying that it would work if patients only liked it more.

 

[adreno]

I find the "somewhere in the middle idea" is particularly odd in a scientific inquiry.

I agree with this. Scientific inquiry requires analyzing the available data, and making a judgement. Seems to me Gelman has done neither.

 

[JohnnyD]

@Kyla (aka the mysterious 'K'), great comment. Glad you're able to post now.

Kyla, that really is an excellent summary of the state of the PACE/GET study!