The PACE trial

Muriel:  (nicknamed the PACE study) and initially touted as a way to produce ‘recovery’ for ME/CFS patients has come under increased scrutiny since its publication in 2011.

It was originally announced with considerable media hype, eg

But ME patients found it very hard to believe (given their own experience of exercise) and started asking questions

Just a few days ago the ME Association (UK) has arranged with SAGE Publishers to give Open Access to the various scholarly articles questioning/defending the PACE trial

Unfortunately, the ‘biopsychosocial model’ used in the PACE trial has become entrenched in the UK Welfare system making it very difficult for people disabled by this illness to receive the benefits they need to survive.

While much of the rest of the world has now moved toward disregarding this study for the methodologically poor quality which pervades it, here (in the UK) there seems to be a profound unwillingness on the part of both some sections of the research community and government/welfare communities to acknowledge that it was a deeply flawed study which should be retracted.  An apology to all those hurt by CBT/GET ‘treatment’ would also be useful.  A determined effort to remove these kinds of warped assumptions about poorly understood conditions, like ME/CFS, from the welfare system would also be  helpful.  Further, a complete revision of the advice given to GPs would be in order.

The ME community has been spoken of by the PACE researchers as an angry group of patients.  No wonder, when they’ve been the subject of such research/medical/welfare malpractices!

Huge thanks go to the many ME patients and research activists who put huge efforts into getting the data for this trial opened to scrutiny and then re-analysed and exposed for what it is.