A general thread on the PACE trial!

Maybe he followed the #medebate

 

a while later:
https://twitter.com/user/status/1089699795000848384

 

ok so being impassioned is fine but where is any credible evidence that the research is wrong? Not made up whining

OK, so why does Simon Wessely's lawyer best mate agree PACE is rubbish?
Why do people with no vested interest in ME think it is rubbish?
Have you read the trial Dr Blanchflower? (as they say).
Because if you have you should know it is rubbish.
Unless of course you know nothing about science.

Maybe Dr Blanchflower runs courses in the Lightning Process.

 

The 2 likes on this tweet are funny and pathetic, it's the psychosocial sock puppets.

He could seriously get in trouble if he continues like this. Oh well.

 

An alternative theory about Danny Blanchflower: I remember a discussion on The Bad Science forum where one of the guys who was defending the recovery criteria for the PACE Trial mentioned he had damaged his ankle and was told not to expect full function after an operation so recovery didn't necessarily mean full function so similarly recovery for people with ME should not necessarily mean full function. There were some pretty outspoken people on that forum last time I was there.

 

Presumably you meant to say "so similarly recovery for people with ME should not necessarily mean full function".

 

Cheers. Fixed.

 

I frequently find myself coming back to why (oh why oh why) some people cannot appreciate the way subjective primary outcomes alone are unacceptable in an unblinded study. I'm sure there are various reasons, but to me one stands out, and it's a sort of self-fulfilling fallacy.

• The premise that the illness is due to distorted illness perceptions. i.e. The patient's subjectivity is at odds with their illness reality.
• So the best way of measuring this must be to capture the patients perceptions, to check if their subjectivity aligns closer to reality.
• No need for objective outcomes therefore, because it's all about subjectivity.
• But the "reality" being checked against is in the researchers heads, and is not reality at all. But they cannot see that.
• This has to be the ultimate in confirmation bias! Which I suppose is what religion is all about.

 

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.

 

A potential new PACE critic?
https://twitter.com/user/status/1089975421800771584


https://www.liverpool.ac.uk/psychology-health-and-society/staff/benjamin-barr/

 

I am not sure that saying "I was not talking about patients honestly" helps his cause. A little more care required, perhaps.

 

So, according to Blanchflower, patients can't be activists/activists can't be patients, and all science is good and shouldn't be attacked. I shouldn't be but I'm still surprised at how dumb some supposedly smart people can actually be.

 

These musings of his seem of little import when one considers that he was on the Bank of England Monetary Policy Committee in the lead up to the crash. With such perspicacity and prescience it is perhaps not surprising that we are where we are.

 

He's trying to open the door onto an argument he does feel comfortable about. The death threats....

The "activists" who by some strange warped logic these people have, have simultaneously been right about PACE all along, and defending science against the bad science of the PACE doctors but because of a few angry letters or Youtube videos or emails nullify everything they were actually right about - and can be used to put down any ME patient.

It's irrelevant to the Blanchflowers that one side was right and one side was wrong. The PACE team merely from the experience of being tackled over their lies and abuse are the lillywhite ones as if sanctified by the experience and absolved and innocent of any wrongdoing.

Suddenly he is back on his white horse again and the hero.

Given that he cannot muster a logical or scientific argument FOR the Pace trial he only has one trick up his sleeve now.

 

Precisely.

Activist do good work all the time. Smear campaigners have tried to redefine the word for some time now. And yes, intelligence has it's many sub-groups I think, and it seems a single person can have high scores in some and dire scores in others.

 

PACE defenders and old friends, continued....

Enter Richard Bentall, co-author of the FINE trial:

https://twitter.com/user/status/1090970061412749312

https://twitter.com/user/status/1090971639486054401


Richard Bentall #FBPE‏ @RichardBentall (re: Cochrane criticism)

https://twitter.com/user/status/1090975201427419141