A general thread on the PACE trial!

I'd assume that never happened. They did talk about a feasibility study for that, and I wondered what happened there. There's also data from LTFU that was never released.

 

A couple of years ago, QMUL published something that indicated White was the PI for that. It was after he had retired. So I badgered the PR guy a few times to get an answer as to how this study was going forward with White if he was retired. And if it was going forward, who was doing it, if not White. I was told then that the study was no longer being planned at that point. Not sure what if anything has happened since. It took a few back and forths to extract that information.

 

Ah yes - the feasibility study got approval 3 and a half years ago now - I very much doubt they ever bothered doing it.

 

see https://www.s4me.info/threads/freed...-raw-data-successfully.1076/page-2#post-18397

 

Yes, I think that was probably the notice I saw. I can't remember now--would have to check the back posts. It was right after he had supposedly "retired," so that date seems about right.

 

Response to a deleted discussion of a deleted tweet.

As i recall, PACE & FINE were definitely described as 'sister' trials back in the late naughties. Sorry i dont have a ref for that but i do remember it being 'common knowledge' at the time. So someone in the FINE arm could quite easily have thought of themselves as being part of the 'PACE trials'.

Indeed

 

Oh, no, that's impossible, I was assured they were chased out of the field by relentless death squads hounding them day and night. That can't be right.

Wow, a whole 9%, which I'm sure will be totally "random". And they consider a 75% response rate to be a success, so 7%. That's some "success" right there.

 

From the first PACE participants newsletter:

Fine (www.fine-trial.net) is a “sister” study to PACE currently being carried out in the north west of England. It will show [know] how effective a “pragmatic rehabilitation” programme, provided by nurses in a patient’s home, is. The programme has the major advantage of allowing people who are too unwell to attend a clinic to nonetheless receive treatment
https://web.archive.org/web/20140712065624/www.pacetrial.org/docs/participantsnewsletter1.pdf​

 

Ah now, the b@****** just didn't want to get better.

[Sarcasm]

 

Perhaps of interest:
https://twitter.com/user/status/1288244505792086016


Some people do seem to claim to have been part of the PACE Trial for some reason when they weren't e.g. they mixed up trials or even just the clinics.

 

Of course...

https://twitter.com/user/status/1290383495542591488


Oh yeah, they totally "stepped back" and boldly and unbiasedly tested the thing they have been selling for decades. I'm sure that the fact that Horton shares those beliefs has nothing to do here. Nothing at all.

 

There is no universe in which that statement is true.

 

Who in the patient community had evr heard of "adaptive pacing therapy"?

 

¯\_(ツ)_/¯

 

you'd have to ask AfME that question.

 

https://twitter.com/user/status/1297435040016740352

https://twitter.com/user/status/1297436682690666496

https://twitter.com/user/status/1297439306659897344

https://twitter.com/user/status/1297442361308516352

https://twitter.com/user/status/1297443526834294785

 

(Continued)
https://twitter.com/user/status/1297444517986041858

https://twitter.com/user/status/1297448522678140928

https://twitter.com/user/status/1297666712775655425

 

I doubt this person has this in mind but, yes, fraudulent research needs serious investigation, especially in the UK where it is clearly rampant because of systemic enabling.

https://twitter.com/user/status/1300486806484516864