The PACE trial video series by A Broken Battery

That's pretty much the loophole. PACE wasn't medical research, does not even pretend to other than as its use in trying to erase a medical entity. It's graded on a curve even by the standards of psychological research but somehow also benefits from all the credibility of being medically valid because reasons, mostly greed with parts delusion of grandeur.

No one who promotes PACE thinks of it as medically relevant. It's psychological research showing "CFS" is a psychological problem related to attitude and behavior and the medical credibility is simply to humor us and give it more weight than it deserves because ME remains a valid medical entity. Everyone fluffing it is fully aware of this and simply plays along because it works and it validates their beliefs.

But since the lines between psychology and medicine are being erased it makes a lot of people quite happy in their quest to psychologize medicine. We're just stuck in the crossfire of an ideological transformation of medicine. One that will fail massively once the numbers and impact assessment are in and people realize it's financially (and morally) disastrous, but it will take some time for that realization to unfold, and more than a few fraudulent cherry-picked attempts at detailing how wonderful the emperor's butt flaps are.

 

A real one. I'd like to compare something that genuinely uses a number of criteria to measure success.

You might be interested to hear that I have been looking at the GET group, and eliminated all those patients without the full "recovery" criteria. That left 134 patients. The doctors diagnosed that 99 of them still had CFS at the end of the trial, but 39 of these diagnoses were overruled by the scores on the sf-36 or the CFQ (mostly the sf-36). On the one hand it is weird to think that the doctors themselves would have diagnosed a recovery rate of 35 out of 134 (27%), but even more weird to realize that the PACE researchers were happy that their two questionnaires were able to refute 40% of the doctors' diagnoses of CFS – and these were supposed to be specialists.

 

Do we know how the doctors made their assessments? Ongoing monitoring? Consultation? I'm guessing probably still based on subjective self-reporting?

 

Just been looking in some of the PACE literature, and although I realise this statement had been made, and was commented on somewhere not so long back, I'd not appreciated (or maybe I just forgot) it was actually stated in the 2013 Recovery paper:

Massively more likely related to the finding that the above quote is BS.

 

Further to the issue of 13% recovered at baseline on SF-36 PF with revised threshold, and MS and Co. supposedly rebutting this by stating it was only one of multiple recovery criteria.

Looking back at the 2007 PACE protocol:

Or in Boolean form, Recovery achieved if:

CFQ AND SF-36 PF AND CGI AND (Oxford OR CDC OR London) = True​

Basically, if any one of the AND'ed clauses is not true, then there is no recovery.

So when MS claims that lowering the SF-36 PF pass threshold from 85 to 60 was not a big deal, because it was only one of multiple criteria, that is itself rebutted by their own 2007 protocol! Of course it was a big deal - every single criterion was a big deal because they stated so in the protocol! Else they would not have said "all four"!

 

Which is why correcting just the sf-36 recovery target has such a big effect.

 

And why they clearly gave in to temptation and frigged it.

One of the other factors that often gets glossed over when talking about the headline figures, even the corrected ones, is they then still had to be corrected for against the SMC (supposedly control) arm. The numbers quoted often seem to miss this.

 

The level of BS involved in this single paragraph is so dense it could form its own black hole. I feel like it's a waste of time but need to unpack it. The sheer dishonesty is mind-boggling.

Previous reports are irrelevant considering the whole point of PACE was to put those small trials to a definitive test. Poor correlation should always favor objective outcomes over self-reported ones. Here this precisely makes the case that self-reported outcomes are unreliable but the conclusion of PACE authors is to favor the self-reported outcomes they like over objective outcomes that show them wrong. What a joke.

Speculation has no place here considering the price tag of this trial and how they could have put those assumptions to the test. Moreover everyone's activity patterns are heterogenous, this is simply a meaningless statement, and if we are to consider that this is a treatment that can cure people of CFS then it becomes irrelevant to assess whether people have effectively been cured of CFS given assumptions about CFS patients since they would then not be considered CFS patients anymore.

Which completely invalidates the entire GET arm, that explicitly made the assumption of severe deconditioning while also being poorly representative of the whole disease as it basically erases the severe+ patients.

There are so many things wrong with this single paragraph it could be turned into a whole book, examining how delusional thought can infect medical care by the clever use of pseudoscience disguised as evidence-based medicine. The people involved in this are dishonorable frauds who should never be in a position of authority over vulnerable people given their pathological use of bullshit conjecture and avoidance of reality in favor of a pseudoscientific ideology.

 

As I was reading that section, with the benefit of a bit more insight than when I read it the first time, it truly comes across as saying they reverse engineered their findings to get what they wanted. That section alone screams out what 3rd-rate science PACE was.

 

https://twitter.com/user/status/1157209550547763200


on this twitter thread someone mentions about children; could a tweeter post a link to @Adam pwme other video on children with ME.

 

Thanks Sly have replied.

 

@Adam pwme has been busy again.

Code:

https://youtu.be/pPAe0ZUmoiY

https://www.youtube.com/watch?v=pPAe0ZUmoiY

https://twitter.com/user/status/1167451262708830209

 

You beat me to to it Andy, Thanks for sharing.

 

Video also uploaded to Facebook on a new blog page too as well as other vids in case anyone is interested.

https://www.facebook.com/brokenbattery/

 

No music version

https://www.youtube.com/watch?v=8Qny9RsJuHw

 

Highlights (~2 mins) of the PACE trial video series parts 1, 2 and 3. MPs, experts and patients discuss the harm and flaws of the controversial trial of Graded Exercise on ME patients. “One of the biggest scandals of the 21st century” Carol Monaghan MP.

https://www.youtube.com/watch?v=CHWmxpD70tw

 

Video also on Facebook for easy sharing

https://www.facebook.com/brokenbattery/

 

Great idea to make a <2 min cut that can be shared on Twitter. It's easy enough to watch Youtube videos but embedded videos on Twitter are much more likely to be watched there.

 

Thanks Trish appreciated