Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
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:
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."
- “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
The world was being told a story it wanted to hear, so it didn't look too closely.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.
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.
Cort said:With this critique from an established statistician, the stakes for Lancet and other journals publishing the PACE studies just got higher. Will they... continue on their way, an embarrassment to themselves...
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
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/
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.
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.
Yes, but the world includes family, close friends, colleagues, etc... in many, many cases, they haven't looked too closely either.The world was being told a story it wanted to hear, so it didn't look too closely.
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 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.
As did I. Has anyone looked it up?I read that White authored a paper where they discussed exactly this error.