A general thread on the PACE trial!

Got it. Thanks.

 

And Peter White's own criteria for CFS are 75 and below on the SF-36. Or at least they were. Maybe they still are, consistency is not really their thing. Regardless this is completely at odds with the concept of 60 being of normal range anything. 60 is a severe level of disability no matter what one thinks, it's what an average 80 year-old rates.

 

If you check the Twitter thread then good suggestions have been made already, but posting in case anybody comes up with a suggestion that has been missed.
https://twitter.com/user/status/1188044292985671681

 

https://twitter.com/user/status/1188084414674280453

 

Despite spending too much time on Twitter and following some of those who commented, I missed this thread yesterday. So always good to post them here, especially when there are requests for more information. I added two articles.

 

Dr Myhill made a presentation last May on the PACE trial and about her complaint to the GMC. I thought it was an excellent summary of the issues and how they add up to a case of scientific fraud. The violations are so egregious that they are hard to believe, amounting to system-wide failure that should shake the foundations of medical research. And yet, all true and none of the claims have been refuted, simply reworded and whitewashed.

The trial itself, run according to its original methodology and protocol, would have been weak and unreliable but still would have had to admit to the failure of the CBT-GET paradigm. It failed to show any benefits and numerous steps were taken to hide that fact and turn the null results into a fraudulent positive. There is a financial fraud element because of who was involved as well as general misrepresentation of its results. The facts speak for themselves loud and clear.

I doubt it will work, I expect the GMC to find ways to bury it despite the court order. Most likely is what happened with Crawley, where the facts are not disputed but somehow do not amount to anything of concern, a full whitewash whose conclusions are detached from the evidence, just as PACE itself did.

However I still think it will matter in the end, the facts are damning and make the Wakefield MMR fraud look benign by comparison because of who got involved to squash those concerns and the abundance of evidence that the trials represent a cherry-picked outcome-seeking bubble at odds with reality.

I haven't seen the presentation posted here so here it is. The complaint itself is backed by many PACE participants and additionally over 10K signatures from the patient community. A decision to ignore indisputable claims will be a slap in the face to the very idea of patient safety, but then what else is new when it comes to us?

https://www.youtube.com/watch?v=T8eM-C46pAg

 

Now that is interesting.

 

Do we know who her audience was?

 

Video reference says:

It seems like the audience was already familiar with the topic so probably included some supporters who went there to support her. As she explained in the video she gave an ultimatum to the GMC to provide answers to questions she asked about but was ghosted and that she would give this talk to make it more public, in the hope that some press would pick it up. Of course no news media is touching this with the shadowing of the SMC over science reporting and the narrative over poor old aggrieved researchers.

 

We have seen some comments over the years but a consolidated list of verified comments would be very useful. No matter what it says, I would be very much interested in hearing from those participants' own words.

 

An excuse to plug the PACE Trial recovery reanalysis paper. Sure to make the PACE Trial team happy ... not!

https://twitter.com/user/status/1205836915464974338

 

Got a PACE-trial question: in the statistical analysis plan (Walwyn et al., 2013) it is said:

But has this data ever been reported in a paper? The main PACE trial paper in the Lancet reported only the expectations of trial participants, not of the staff.

Does anyone have an overview of data from the PACE trial that hasn't been reported? if I remember correctly long-term data on employment were also promised?

 

https://forums.phoenixrising.me/blo...asures-and-the-like-from-the-pace-trial.1877/

 

Thanks @Tom Kindlon and @Dolphin !

 

https://twitter.com/user/status/1212653204812574720

 

Yes, makes you think that maybe the PACE trial could have been based on the Dead Parrot sketch.
http://montypython.50webs.com/scripts/Series_1/53.htm

 

https://twitter.com/user/status/1227654708518670336

 

https://twitter.com/user/status/1234510351103905796