Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

https://www.meassociation.org.uk/20...ence-empowered-a-whole-community-09-may-2019/

 

typo?
"There are few in the ME/CFS community who have not heard of the PACE Trial. This £1.5 million clinical trial"

 

Very nicely presented summary from Carolyn.

 

This makes me feel, very proud.

Hang on this ground is a bit high ...I might need to sit down.

 

Excellent, thanks @Carolyn Wilshire . A very useful and well-written summary for the lay reader.

I spotted a couple of typos, as well as the £1.5 million one:

“In our reanalysis, we set about to see what the results would have looked like if the protocol had been followed.”

“However, in our response we decided to focus on the trial investigator’s own biases.”

 

Another inaccuracy:

This quote came from Richard Horton, not one of the trial investigators.

I'm more than happy to read things through at short notice for no fee. I did used to be an editor once... Please, just ask!

[eta: A copyeditor. Not a journalist.]

 

Thanks, @Lucibee.

It actually went past the eyes of three different people, but alas we still did not catch everything!

 

Sorry, I'm confused. about the £1.5 million. What was the right figure? Thought I pulled that from a reliable source, but did I accidentally change the currency or something?

Be worth getting the MEA folks to fix that.

 

I'm not sure anyone knows the true figure. 'over 5 million' seems to be the commonly used figure. A possible supporting source:

https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=41185

 

£5 million is the figure that is usually quoted, although I suspect the costs have exceeded that now.

http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181:

[Edit crossed with @Esther12]

 

Thanks, @Carolyn Wilshire, for a nice blog and for participating in this very important debate. I think that the problem is bigger than just PACE or ME/CFS; it is about widespread bad research practices, in medical studies in general and in psychological studies in particular.

It is always painful to abandon a pet theory, so we should all appreciate what the PACE trial authors are going through. A quote by Max Planck comes to mind, about the reluctance of classical physicists to accept the new quantum theory: "A scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it."

 

Sadly people are living longer

 

I'll settle for retirement.

 

I'm surprised that they didn't spot it. The £5m (or sometimes $8m is used in US publications) is all over the place (a lot of headlines too).
Good reference source is me-pedia
https://me-pedia.org/wiki/PACE_trial

@Russell Fleming

 

I think Russell's going to correct the cost error shortly. Sorry about that.

 

it's been fixed. no harm done

 

Liking your comment on the end of this @Graham

 

The problem is psychosomatic medicine making a comeback following a retreat that decades of failure brought on themselves. Psychosomatic medicine has always been this bad.

The problem has always existed and always relied on confident pseudoscience indistinguishable from con artistry. It should not have been rehabilitated, especially since most of the old failed ideas have been recycled nearly as is. The theoretical model for psychosomatic peptic ulcers is nearly identical to the current incarnation of the psychosomatic model of ME.

As long as magical thinking of that nature is allowed, the problem will remain. If peptic ulcers had not been solved by incredible courage, they would still feature prominently in MUS and "treated" with CBT/LP/ACT/Whatever. The whole thing has to be challenged as cheap pseudoscience, taken behind the proverbial shed and shot, lit on fire, buried, then the Earth salted and preferably nuked from orbit.