A general thread on the PACE trial!

https://twitter.com/user/status/1282725550726021121

 

Lazy so-and-so. But no doubt the experts here can help him out.

 

Either a terribly ignorant name, or an alarmingly deliberate one.

https://twitter.com/user/status/1282698163468619777

 

https://twitter.com/user/status/1282750121462181895


ETA:
https://twitter.com/user/status/1282757153233797120

 

Eeeewww

 

It proves that no one outside of the MUS world has ever heard of the PACE trial...

 

Or that those physios who have been following its recommendations are well in there!

 

White et al deliberately chose the name "PACE" to sow confusion. They knew that, whatever the outcome, pacing would get a bad name.
As an outsider, I initially found it very confusing that the ME community were so angry about the PACE trial, and yet so enthusiastic about pacing as a management strategy. And then I read it!

So isn't it about time that the word "pace" was used in a more acceptable context?

 

AfME fell into their pitfall trap.

 

Time and time again...

 

That's abusive relationships for you.

 

And now they are playing a key role in DecodeME....

 

https://twitter.com/user/status/1283027451610791937

https://twitter.com/user/status/1283027896030855169

 

Yay! DecodeME to the rescue.

 

It clearly was a mistake but I hate how every time something like that happens people apologize for the "distress". It's not "distressing", it's insulting, a slap to the face. Stop treating us like freaking children who need emotional control or tone policing. It's somewhat excused by ignorance but coming from professionals this is as weak an excuse as it gets.

Anyway, moving on to important things...

 

https://twitter.com/user/status/1284220221444759559


I don't know what to tell him without sounding too negative. We know exactly why. The people tagged know exactly why. But the truth is too scandalous to put into tweets.

I believe the technical term here is chickens coming home to roost. When decades of disinformation and pseudoscience conflict with a massive pandemic. Godlee in particularly will be massively confused by this. Oh well, that's what happens when you don't take your job seriously.

A bit down the memory lane:

How do we get this message out, indeed?

Unrelated but...seriously:

There was a huge petition and years of controversy over this even before PACE began. Horton is so full of it.

Given yet another round of backs-and-forth over bad research at BMJ, maybe that could be a useful stick to prod people with, @dave30th?

 

eww reading those quotes again makes me feel sick. One forgets how bad it was. I mean not forgets of course, i know very well how bad it was & is, we're all living it, impossible to forget. But when you read it again after a few yrs... ugh it makes my blood run cold.

My goodness when these & all the other even more heinous stuff gets quoted again in the yrs to come.... as you often say 'history will not look kindly on this'.

 

For anyone in the Oxford area I am sure they would find the bio of the CFS clinic lead interesting:

Dr Daniel Zahl
Clinical Psychologist

Daniel is the Clinical Lead for the team and has worked in the field of chronic fatigue for the past ten years. He was involved in the UK's largest CFS clinical trial (PACE).

from:https://www.ouh.nhs.uk/chronic-fatigue/team/default.aspx

 

Discussion moved from this thread:
NICE Statement about graded exercise therapy in the context of COVID-19
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Whatever happened to the 10-year follow-up study?