FOI request re PACE Cost-Effectiveness Analysis

Is there anyway of us seeing what data is available? eg: is the LTFU employment data included? I couldn't see how to find that out, but surely you must be able to find out what's available before starting to devise a proposal?

 

Possibly not. I have been pushing for some detailed data from Bristol for one of the Crawley studies, and they have produced an agreement to sign about not making the data public. I haven't read it yet, so can't be sure, but it looks as though they are recognizing patient researchers.

 

Personally, I think we have pretty much nailed the PACE coffin: any further analysis would just be repeating what a bad trial it was: unless, of course, there is some useful and proper analysis of solid data possible along routes that they did not consider (e.g. length of illness vs performance on step test – do folk deteriorate over time? Or step data vs time delay to diagnosis - is a late diagnosis detrimental? Actually this is more of a three-way analysis).

 

Pretty much. When you reach the stage of "we changed our methodology and hid our intent to give ourselves better results and it worked so suck it" and it's accepted as a serious academic argument then nothing matters past this point. It reinforces long-held beliefs and that's all that matters, doing anything else would threaten the magical psychology bandwagon, which can't be stopped without acknowledging that harm was, in fact, done on a massive scale, with institutional support (and funding) and informed of the basic facts, all denied because ultimately facts are meaningless in the BPS-ME model.

At some point people will claim they knew all along that it was bad and cite all the reasons we scream about as evidence but for now this is a political/ideological decision and facts don't affect those. In a way SMILE solidified that, yet again acknowledging a pattern of deceit that violated requirements and "zero tolerance" policies, this area of research is exempted from all rules and ethics, even with repeat offenses that are indefensible on their own, hand-waved away with a "reader beware, don't ask me I'm just the editor".