A general thread on the PACE trial!

White et al deliberately chose the name "PACE" to sow confusion. They knew that, whatever the outcome, pacing would get a bad name.
As an outsider, I initially found it very confusing that the ME community were so angry about the PACE trial, and yet so enthusiastic about pacing as a management strategy. And then I read it!

So isn't it about time that the word "pace" was used in a more acceptable context?
 
Kalliope said:

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It clearly was a mistake but I hate how every time something like that happens people apologize for the "distress". It's not "distressing", it's insulting, a slap to the face. Stop treating us like freaking children who need emotional control or tone policing. It's somewhat excused by ignorance but coming from professionals this is as weak an excuse as it gets.

Anyway, moving on to important things...
 


I don't know what to tell him without sounding too negative. We know exactly why. The people tagged know exactly why. But the truth is too scandalous to put into tweets.

I believe the technical term here is chickens coming home to roost. When decades of disinformation and pseudoscience conflict with a massive pandemic. Godlee in particularly will be massively confused by this. Oh well, that's what happens when you don't take your job seriously.

A bit down the memory lane:
Richard Horton: We were delighted to get this trial. It was eagerly awaited. It was a remarkable study, because the investigators stepped back and were willing to do an experiment comparing conventional treatments for chronic fatigue, cognitive behavioural therapy, for example, against a treatment which was very much endorsed by parts of the patient community, but very sceptically received by the more scientific community, and that was the adaptive pacing therapy. So they were really stepping back and comparing two philosophies, not just two treatments, two philosophies of what chronic fatigue syndrome was.
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Richard Horton: Yeah, I mean adaptive pacing therapy essentially believes that chronic fatigue is an organic disease which is not reversible by changes in behaviour. Whereas cognitive behaviour therapy obviously believes that chronic fatigue is entirely reversible. And these two philosophies are kind of facing off against one another in the patient community and what these scientists were trying to do is to say, 'Well, let's see. Which one is right?'
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How do we get this message out, indeed?

Unrelated but...seriously:
No, the paper went through peer review very successfully. It's been through endless rounds of peer review and ethical review, so it was a very easy paper for us to publish. It was only at the point of publication and just after that we have had this extraordinary negative reaction.
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There was a huge petition and years of controversy over this even before PACE began. Horton is so full of it.

Given yet another round of backs-and-forth over bad research at BMJ, maybe that could be a useful stick to prod people with, @dave30th?
 
rvallee said:


I don't know what to tell him without sounding too negative. We know exactly why. The people tagged know exactly why. But the truth is too scandalous to put into tweets.

I believe the technical term here is chickens coming home to roost. When decades of disinformation and pseudoscience conflict with a massive pandemic. Godlee in particularly will be massively confused by this. Oh well, that's what happens when you don't take your job seriously.

A bit down the memory lane:



How do we get this message out, indeed?

Unrelated but...seriously:

There was a huge petition and years of controversy over this even before PACE began. Horton is so full of it.

Given yet another round of backs-and-forth over bad research at BMJ, maybe that could be a useful stick to prod people with, @dave30th?
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eww :sick: reading those quotes again makes me feel sick. One forgets how bad it was. I mean not forgets of course, i know very well how bad it was & is, we're all living it, impossible to forget. But when you read it again after a few yrs... ugh it makes my blood run cold.

My goodness when these & all the other even more heinous stuff gets quoted again in the yrs to come.... as you often say 'history will not look kindly on this'.
 
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