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PACE Trial Gets Most Devastating Critique Yet

duncan

Senior Member
Messages
2,240
With the PACE house of cards looking to collapse at any moment (although that is by no means a done deal yet), what, theoretically, could state/insurance concerns look forward to for similar conclusions?

Any proposed large scale ME/CFS research studies come to mind?
 

Comet

I'm Not Imaginary
Messages
693

The PACE trial results (which have been published in several journals) were trusted. In an editorial "On PACE: An Editorial" published alongside Goldin's critique Trevor Butterworth noted that the Independent's headline was “Got ME? Just get out and exercise say scientists.” The Medical News Today reported that Fear of exercise' is biggest barrier to chronic fatigue syndrome recovery". Others media pieces Goldin cited were:
  • “Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds”—New York Times
  • “Pushing limits can help chronic fatigue patients”—Reuters
  • “Brain and body training treats ME, UK study says”—BBC
  • “Therapy, Exercise Help Chronic Fatigue Syndrome”—WebMD
  • “Helping chronic fatigue patients over fears eases symptoms”—Fox News
  • “Chronic fatigue syndrome patients’ fear of exercise can hinder treatment – study”— The Guardian
  • “Study supports use of 2 controversial treatments for chronic fatigue”—CNN
  • “Chronic Fatigue Treatments Lead To Recovery In Trial”—Medical News
Butterworth reported that because of the PACE trial "the UK’s National Health Service, the Centers for Disease Control, the Mayo Clinic, and Kaiser all ended up recommending cognitive behavioral therapy and exercise for ME/CFS" and that "PACE has become the paradigm for understanding a condition affecting millions of people."

The ripple effect and amount of damage done to patients due to PACE is astounding. Seeing the major media articles listed here parroting the study and it's false conclusions was upsetting to me - and I've been following this debacle all along.

But what astounds me too, is that all along thousands of us have been shouting "No! This is wrong and harmful." Yet it seems that the world finds it easier to believe the ridiculous explanation that we are afraid of exercise, or that thousands upon thousands of people are too delusional to realize that all we need is a little fresh air and a happy thought to fix us right up.

It has been disturbingly easy for the world to write us off with a wave of it's collective hand and a sneery raise of it's eyebrow. Hopefully, articles like this one, and like the ones cited within it, will make a difference to how the world sees ME/CFS, the PACE Trial and, most important, to our lives.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
From the intro:

Cort said:
The PACE trial may, in the end, be about more than an injustice done to the chronic fatigue syndrome (ME/CFS) community. It may become, if the latest devastating criticism of it takes hold, exhibit number one in the medical community of how not to do a clinical trial.

It also presents a challenge to the orthodoxy of the medical profession. To think that a bunch of sick patients and a journalist working without pay could bring down an $8 million dollar study and embarrass one of the most respected medical journals in the world. It shouldn't happen but with the latest critique emanating from a statistician one wonders how much time the PACE trial and Lancet have left.

Very well said.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
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Forbin

Senior Member
Messages
966
The PACE authors justified their criteria but in doing so exposed a basic mathematical error they made when they confused mean values for average values.
http://www.cortjohnson.org/forums/t...ost-devastating-critique-yet.4003/#post-15641

I believe Cort may have tripped up in describing this error. When you read the article at stats.org, it says that the authors appear to have confused median and mean, not average and mean. Average and mean typically mean the same thing.
The PACE researchers appear to have made a very basic mathematical error: confusing the median and the mean. http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

Of course, if I'm wrong about this, I plead the 5th. :)
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
I believe Cort may have tripped up himself in describing this error. When you read the article at stats.org, it says that the authors appear to have confused median and mean, not average and mean. Average and mean typically mean the same thing.


Of course, if I'm wrong about this, I plead the 5th. :)

No, you're right - why not post a comment? He's always happy to get corrections.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
It has been disturbingly easy for the world to write us off with a wave of it's collective hand and a sneery raise of it's eyebrow.

I expect nothing less from a society that worships the wealthy and despises the rest. I certainly understand why people might not want to look too close at the actual history of unending organized murder and exploitation - it's very depressing to think about, especially while listening to a two-hour CBC Radio special on the 100 year anniversary of the Easter Rising in Ireland.

The Irish fought for 800 years to drive out the UK. I hope it doesn't take that long to drive out the psychobabblers.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I believe Cort may have tripped up himself in describing this error. When you read the article at stats.org, it says that the authors appear to have confused median and mean, not average and mean. Average and mean typically mean the same thing.
Actually I think this was deliberate. Its part of why they used non-normalized data and then applied a standard deviation calculation on it. They knew that this would produce a biased result in their favour. There is no excuse.
 

A.B.

Senior Member
Messages
3,780
Actually I think this was deliberate. Its part of why they used non-normalized data and then applied a standard deviation calculation on it. They knew that this would produce a biased result in their favour. There is no excuse.

I read that White authored a paper where they discussed exactly this error.