A general thread on the PACE trial!

Crawley's lying again about the PACE trial. If only there were such things as people whose job it is to verify facts and press people for evidence of their claims. Maybe kept in some journaling form, some sort of... journalist. No, that's preposterous, no one could possibly do that: check basic facts.

She is lying here and that the reanalysis used the pre-registered protocol. Doesn't matter, she still lies because there are no consequences to blatantly lying about medical issues.

https://twitter.com/user/status/1447216997226491915

https://twitter.com/user/status/1447217307542040579

 

This is from 2016, not recent

 

The key to it is independent verification. Vaguely reminds me of grappling with simultaneous equations in my youth, and having to appreciate that it's no good trying to just rehash the same equation in different ways, but needs something external to it.

 

The first post is from a recent interview with Crawley recently, re the Clock trial for kids with long Covid. The 2016 one is for background info.

 

I have just noticed the Queen Mary PACE trial page has been removed or moved. This page was full of info on PACE and had links to various documents, such as trial materials.

https://www.qmul.ac.uk/wiph/research-projects/current-projects/projects/pace-trial.html

This page was active a few months ago. It looks like a whole section of the website has been removed or moved, and not just the PACE page. I can't find any new pages on PACE.

 

Peter Kemp is looking to speak to PACE trial participants.

 

I was contacted by one participant at the time, the problems caused by treatment were not being recorded. How common was this? Peter Kemp might like to ask more questions.

 

Posts moved from Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

I think the statement that scientists are flawed humans is entirely appropriate.

I think the PACE trial was intended to provide reliable evidence i.e. since all of the previous trials were unblinded and used subjective outcome criteria (questionnaires). I.e. PACE was supposed to use objective outcome criteria (actimetry - FitBit type devices).
In the end the researchers dropped the actimetry and resorted to questionnaires - meaning that the whole trial was pointless. Still, they got paid for work which did not meet the contract requirements.
Then there's the issue of changing the measure of recovery - to the point that someone who qualified for a lung transplant was deemed recovered.

As for those who are ill and/or their families etc. - I think it's entirely legitimate to challenge this debacle.
Even an ordinary taxpayer should challenge the waste of £5 million pounds of public money.

 

Not convinced that was why PACE paid initial lip service to objective outcomes though. I think until @Jonathan Edwards raised the issue a few years back, this gaping methodological hole was just the norm for psych medical trials, and even to this day they cannot get their heads round why it is so problematic. For them illness = self-reported subjective symptoms - modify self reported subjective symptoms by fair means or foul = problem solved. A £5M stitch up.

 

They dropped actigraphy but still had four objective outcomes. And I don't think the whole trial would have been pointless had they accepted their poor results and not changed their outcomes. They would have had null results and the field could have moved on.

 

Yip I think Brian Hughes +++ has been trying to change the norm --- but it seems to persist.

Yip --- they shouldn't have been allowed to drop actimetry i.e. unless the funding was withdrawn.

 

Indeed, but it doesn't even need to involve addressing the symptoms. Modify the self-report, full stop.

The BPS method involves persuading patients to change their attitude to—in other words, lie about—their symptoms. There is no actual treatment.

 

You obviously know way more about this than I do. Yes if they'd even reported that participants hadn't been able to return to work, education +++ then it would have been clear that there was no meaningful improvement.

 

They are never going to get their heads around it. They know all about correct methodology (didn't Wessely write the exemplary "Clinical Trials in Psychiatry"?), but consider what they are doing as more advanced and appropriate in the field of psychological research. They regard us as philistines for clinging to the scientific method. They think they are Picasso:

We are telling them to paint like Raphael, but for them that is so last Thursday. So when we bang on about correct trial methodology we are just proving to them how backwards we are. They know. Really.

This was explained to me during an English lesson with a German psychotherapist over 4 years ago:

https://www.s4me.info/threads/wish-me-luck-everybody.341/page-3#post-5964

They know from clinical experience what the truth is, and having to publish scientific papers paying lip-service to scientific trial methodology is an affront. So they bend and fiddle, as they are perfectly entitled to because they should never have had to publish their knowledge in such an inappropriate format anyway. And we still don't get it. I'm not surprised they're so angry with us.

 

Oh, good grief Sam, sometimes you make it impossible for me to breathe

 

I had a similiar conversation with a psychology student. She told me about a subject she was studying that semester called ‘treatment research’ (norwegian: behandlingsforskning).

In this subject she had learned that because psychologists fight to have the same authority as doctors, they make the mistake of trying to be as similiar to doctors as possible with their research, and wrongly think that psychology can have answers the same way medicine can: with numbers and known causes. To think that psychology could use the same rules for knowledge as science is weird and unnatural. And that while science is knowledge that explains, psychology is knoweldge that needs to understand.

(I have no idea what knowledge that understands means.)

This person also said it’s cowardly of psychologists to not stand up and say that ME could have psychological causes, and it’s cowardly of psychologists to think that they don’t have the authority to do that.

I find it so weird that someone could argue that psychology should move away from scientific ways of gaining knowledge, and in the same breath say this field should have authority to speak on causes of illnesses.

 

That explains why the likes of Wessely and Crawley consider themselves to be brave heroes, and have even constructed the concept of the militant activist to support their delusional narrative. This unhelpful belief system (brave champion hounded by militant activists) has a way of spreading from one susceptible psych to the next. It is a form of mass hysteria which should be studied. Getting the Sunday Times to mock up a letter which never existed threatening to cut off balls she doesn't have (Freudian much?) and put it on the front cover of their supplement is not healthy behaviour. Neither is waving this work of art, much in the manner of someone trying to prove alien abduction by waving a picture of a crop circle, at a TEDX talk in which she publicly portrays herself as a brave champion hounded by militant activists. It's just not normal behaviour by any standard.

Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

 

This made me think of the Michael Franks track, 'The Critics Are Never Kind'.

Code:

https://youtu.be/-xEL1usTMK8

 

Thanks, I needed that. I was getting a bit het up but now I'm all mellow again.

 

I have never forgot a book I read which said that human beings seemed to be programmed for pity. Once someone claims to be a victim all logical reasoning flies out the window. Saying you don't believe them is then seen as an attack and makes people defend them even more.

Calling us terrorists was a strategy that worked for them.