Just a thought but I think that not enough is made of the fact that PACE was a complete waste of resources. Even Wessely tries to dither about how important it is (even though he is proud to celebrate it in a proper forum, receive awards over his contributions that preceded PACE and onto it and how courageous he has been all these years for standing up to / stomping on the neck of a disabled population / militant savages).
PACE was sold as the definitive trial, the one to end once and for all the debate over whether CBT and GET are the best treatment for it (despite literally no one asking that question but the ones trying to fabricate an answer to it). And even its chief architect tries to distance himself from it. It is held as A piece of evidence but even Cochrane basically argues that even with PACE's faults, there are other (tiny, subjective, low quality, high bias) trials that confirm the same even though PACE was done precisely to be the ultimate test of those same trials. It's a mutual admiration peer-review society (with literally the same people giving each other A's in exchange for their own A's).
£5M and it's both a footnote and a crowning achievement despite having shown a null result on 1 year follow-up, and the shadiest possible tiny "benefit" on self-reporting to a population that can at best described as "possibly having CFS, maybe some ME, who knows?". It's a thing of beauty when good things are said about it (which is always as little as possible), and a minor piece of evidence among an imaginary body of evidence suffering from all of PACE's flaws, and then some, when it is criticized (and once the customary accusations of militant savagery have been dispensed).
My point is: it wasn't a wild experiment. It wasn't a first tentative try with very subdued expectations. It was THE trial that followed 20 years of research and was one of the largest psychological trials ever done. Research is expected to fail. But PACE wasn't step 1 in a process. It was the last, final step, built on years of work and preparation by dozens of academics.
I say this because it's easy to dismiss this argument saying research should be allowed to fail and anyway lots of research on biomedical aspects of ME have failed. Research should absolutely be allowed to fail, especially prospective research. But this was as far from prospective research as it gets, it was the nth and final step in a very long process that was meant to end the debate once and for all.
Because even the most generous interpretation is that there may, possibly, in some cases, be a statistically significant effect, if you try for weeks to convince a group of people who may or may not have ME that they aren't even sick at all. This is the best, most generous interpretation (aside from bald-faced lies like Sharpe touting a cure, for those who want it). This most generous interpretation is the final frontier in a 2 decade-long dogged pursuit that add up to millions more in funding the same trial over and over again with tiny variations.
I just think that maybe there is a proper framing that can have a few people pissed off that all this funding was wasted on an ideological ego trip. Because after all this, the answer to life, the universe and everything is still: "more research is needed to assess the efficacy of this treatment but of course it is also the literal word of god and anyone who criticizes it is mentally unstable". Why is utter mediocrity so richly rewarded? Thank you for coming to my TED talk.
