Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

Trial By Error: The 2018 PACE Reanalysis and the SMC’s Expert Appraisals
It has been almost two years since BMC Psychology published a key reanalysis of raw data from the PACE trial. Given the significance of this paper (of which I was the least important of seven co-authors), I figured it wouldn’t hurt to highlight it again.

The heroic Alem Matthees, a patient in Perth, succeeded in liberating the relevant data through a Freedom of Information request, but only after Queen Mary University of London spent £250,000 in legal fees in its efforts to prevent access. The reanalysis documented that the benefits for CBT and GET reported in multiple PACE papers were either exaggerated or illusory when the data were assessed per the methods detailed in the trial’s published protocol.

The paper, which appeared in March of 2018, was called “Rethinking the treatment of chronic fatigue syndrome – a reanalysis of findings from a recent major trial.” Its publication ensured that these criticisms of PACE had been vetted through the recognized scientific process; that obviously was not the case with my 15,000-word investigative journalism series about the trial, which ran on Virology Blog in October of 2015. Anyone who now cites the PACE trial as evidence of the effectiveness of the CBT/GET paradigm also has an obligation to cite the peer-reviewed reanalysis that challenges the core findings.
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http://www.virology.ws/2020/01/13/t...ce-reanalysis-and-the-smcs-expert-appraisals/
 
When the history of this saga is written there will be two eras: Before Alem's FOI win, and after it.

That was the turning point where it became untenable to deny the fatal problems with PACE and the CBT/GET model.
 
Sean said:
That was the turning point where it became untenable to deny the fatal problems with PACE and the CBT/GET model.
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and untenable to continue to claim that the only people opposing the BPS paradigm were a handful of irrational and violent patients.

(Not to ignore the many things that were done by many before and after to change how PACE is viewed, but it does feel as though the FOI win was the watershed moment.)
 
Yes, there have been a bunch of other very important factors, like the P2P and IOM reports.

But Alem's FOI result, and its role in taking down PACE, was absolutely critical in starting the process of reining in the UK branch of the profession, which is the epicentre of this catastrophe.
 
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Sean said:
But Alem's FOI result, and its role in taking down PACE, was absolutely critical in starting the process of reigning in the UK branch of the profession, which is the epicentre of this catastrophe.
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I think Alem's result has greater implications - that citizens, or citizen scientists are worth listening too and have valuable contributions to make.

Of course @Tom Kindlon & our much missed Bob have made great and undeniable contributions, but I see Alem's FOI as the thin end of the wedge.

We need to keep hammering that home.
 
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