Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

Yes, this is indeed a falsehood. The protocol was indeed published. I'm not interested in who approved it and who didn't (that's an internal matter for the researchers), but from the point of view of science, publishing a protocol, putting your names to it, and calling it a "protocol" (which is what they did) constitutes a binding promise. That promise should be adhered to unless there are special reasons for not doing so - for example, your analysis of blood samples could not be completed because the lab burned down.

It was not a preliminary analysis plan. in fact, they were very late in publishing it, and concerns were raised about that at the time. They really should have released the protocol before they started to collect data.
They seem utterly incapable of comprehending the most elementary issues - issues which should be so second nature to them they shouldn't even have to think about it. It's nothing to do with the bureaucracy. It's simply about ensuring trial authors don't get to choose the questions after they know, or have a very good inkling of, the answers.
 
I’ve forgotten the time line of the original protocol. Can they honestly claim the original protocol was a preliminary one as opposed to an approved and published one or this this another blatent lie?
Yes, this is indeed a falsehood. The protocol was indeed published.
Seems deeply shifty to present the trials protocol, published in BMC Neurology once the trial was already underway, as merely the "preliminary PACE analysis plan".

I think you're right to pull that out as an extraordinary claim that we should draw attention to.
Deeply shifty seems a tad euphemistic?
And yes, I think I may need to jot this down in my notebook.
Well done @sea :).
 
The Wilshire et al. paper is also covered in the print edition of today's Times – on page 2!

It's different to the online coverage. It's written by Tom Whipple, the science editor:

Findings of £5m ME study 'worthless'

A landmark £5 million study that formed the basis for NHS treatment of ME sufferers has been heavily criticised for its "troubling" use of data, in new research that claims its recommendations were largely worthless.

Since 2011 the estimated 250,000 Britons with ME, also known as chronic fatigue syndrome, have been offered treatment based on exercise and cognitive behavioural therapy, after a study known as the Pace trial was published in The Lancet and seemed to show this approach improved symptoms.

Now, after a freedom of information request forced the scientists behind the 2011 study to release their raw data, other researchers have performed their own analysis. They said their study, published in the journal BMC Psychology, raised "serious concerns about the robustness of the claims" made about exercise and therapy.

Keith Geraghty, from the University of Manchester, said at the very least the £5 million trial represented wasted resources. "I would argue it could have been spent more wisely," he added.

The authors of the original Pace trial stood by their findings.
Very good, I think, especially considering the space restrictions - and I'm very pleased to see something like this so prominent in the paper.
If anyone’s interested there is currently an offer: £3 for 3 months of The Times & The Sunday Times ‘The Digital Pack’.
https://store.thetimes.co.uk/special-offers/
 
This is starting to get embarrassing, Henrik Vogt

I searched for instances of the word "psychological" in Wilshire, Kindlon et al's paper. I found one:

"If there is a rational basis for patients’ concerns over exercise, encouraging them to push through symptoms may be harmful, and recasting patients’ concerns as dysfunctional may cause additional, psychological harm."

Instances of the word "psychology" were limited to the journal title BMC Psychology and Carolyn Wilshire's place of work.

This is another instance of legitimate critique of the evidence base for the efficacy of behavioural therapies in ME/CFS being recast as an attack on psychology.
 
I searched for instances of the word "psychological" in Wilshire, Kindlon et al's paper. I found one:



Instances of the word "psychology" were limited to the journal title BMC Psychology and Carolyn Wilshire's place of work.

This is another instance of legitimate critique of the evidence base for the efficacy of behavioural therapies in ME/CFS being recast as an attack on psychology.
Apparently he doesn't even have to read it to understand what it is _really_ about..
 
Not so funny for his ME/CFS patients - if he has any.
Just found this on the net by Henrik Vogt: https://www.ntnu.edu/employees/henrik.vogt

It's a long article including "These problems, which are very common in General Practice and associated with much suffering and huge costs, are also often called “functional disorders” (as opposed to “organic”) or “psychosomatic”. Much exposed and debated examples are chronic fatigue syndrome or myalgic encephalopathy (CFS/ME), and what by the lay press, patient advocacy groups and some doctors has been called “chronic Lyme disease”. Why are these problems “medically unexplained” and how can we understand them?"

Maybe more can be found by searching, if anyone feels like it.
 
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Anyone can take that data set and run exactly the same calculations. There's nothing misleading about it. It's in an XLS sheet. You run the numbers against the original protocol, and they come out like that.

The whole point of the reanalysis is presenting the argument that the PACE Trial appears to be misleading and designed to yield the desired result.

Sharpe might as well have written "No!! You!!".

I mean seriously, we would love it, if GET&CBT worked. There's nothing to gain from being right about this. No-one's gonna get back their years lost to this disease, we'll never see a penny of compensation or anything like that.

Maybe we'll get slightly better healthcare while we wait for Science to come up with an answer and maybe a couple folks will get to live in marginally less penury.
 
"The reanalysis is misleading and designed to yield the desired result."

:laugh::rofl::rofl::laugh::rofl::rofl::laugh:

oh what a wit! what a card! how clever you are Mr Sharpe to make such a joke!

What sir? i beg your pardon? you weren't joking? nay sir, you must have been joking.... to accuse the reanalysis of being designed to yeild the desired result, when the desired result was to prove to the world that PACE was redesigned half way through in order to avoid it not yielding the undesired result, and appear to yield the desired one instead. hahaha pishposh sir you must have been joking, what a wonderful wit you are sir!
 
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