Media coverage of Matthees PACE recovery reanalysis: post links here

[Chrisb]

Unfortunately the joke about the definition of "expert" does not work in writing, but is often worth retelling.It may even be worth retelling often.

"Ex" = "has been"

"spurt" = "a little drip under pressure"

 

[Jonathan Edwards]

Michael Sharpe said:
"We had six opinions before we published our results in a prestigious scientific journal. What we are talking about now, is on blogs! The findings of the critics were tested by any experts and written by people who have a bone to pick. With what we mean by science, which has nothing to do. "

I find it weird that anyone should go on saying how wonderful their Emperor's garments are like this. Has it not occurred to them that they are providing clear and incontrovertible evidence that they never knew what they were doing in the first place. Basic methodological standards should be obvious to anyone with common sense. Presumably some people don't have that. It seems that with what he means by science, it has nothing to do.

 

[Hilary]

The problem with saying we have had enough of experts is surely that we haven't? We need experts on our side, as advocates, researchers and clinicians. The distinction to be made must be between experts who have integrity, acknowledge their own fallibility and are open to the work of others, and those who are driven by money, status and ego, leading to conflicts of interest, bias and flawed outcomes (and we all know from bitter experience where that can lead).

 

[Countrygirl]

Michael Sharpe said:
"........... The findings of the critics were tested by any experts and written by people who have a bone to pick. With what we mean by science, which has nothing to do. "
.

(perhaps I have just overdosed by accident?)

 

[Aurator]

Michael Sharpe said:
" What we are talking about now, is on blogs! The findings of the critics were tested by any experts and written by people who have a bone to pick. With what we mean by science, which has nothing to do. "

Assuming this is exactly what he said, his English is as incoherent as his science, and nicely corroborates for us his utter inability to think straight.
ETA: It looks like this may be a bad English translation of a German translation of Sharpe's original English. Could someone clarify?

 

[Yogi]

Assuming this is exactly what he said, his English is as incoherent as his science, and nicely corroborates for us his utter inability to think straight.
ETA: It looks like this may be a bad English translation of a German translation of Sharpe's original English. Could someone clarify?

Yes it is Google automatic translation. Perhaps @TiredSam could assist here?

 

[Aurator]

Yes it is Google automatic translation. Perhaps @TiredSam could assist here?

Of what? I can read German well enough.

 

[TiredSam]

Assuming this is exactly what he said, his English is as incoherent as his science, and nicely corroborates for us his utter inability to think straight.
ETA: It looks like this may be a bad English translation of a German translation of Sharpe's original English. Could someone clarify?

That reads just like a translation of German. I'm not sure whether tidying it up a bit would it any more coherent make.

 

[soti]

"there are no authorities, only experts"

 

[Kalliope]

A Norwegian journal for physiotherapists has a short piece today on the developments on the PACE-trial. No new things in the article itself so won't bother with translation to English, but it is the first time the faults with the PACE-trial have been covered in media in Norway and therefore worth mentioning.
The first of many, I hope.

 

[mango]

A Norwegian journal for physiotherapists has a short piece today on the developments on the PACE-trial.

There was a similar one in the Swedish journal for physiotherapists too (page 18):
http://www.fysioterapi.se/admin/filer/webbtidning_Fysioterapi_8-16.pdf

Google translated version:

Researchers cheated in a study of chronic fatigue

A British study showed that cognitive behavioral therapy and exercise is right for people suffering from the disease ME/CFS, also known as chronic fatigue syndrome. But the research results had been tampered with, an examination shows.

According to the so-called PACE study, published in The Lancet in 2011, 60 percent of the participating ME/CFS sufferers got better with cognitive behavioral therapy (CBT) and gradually increased training. 22 percent was said to have recovered. Remarkable results as typical of the disease is that physical activity leads to deterioration.

In August this year a British court decided that the data must be submitted for review. Several shortcomings were revealed. For example, the selection criteria were too wide, and the definitions of the concepts "healthy" and "improved" were changed during the study - which meant that the results could be quadrupled.

- We have not found the study useful, says Per Julin, specialist at the ME/CFS clinic at Stora Sköndal in Stockholm.

- It does not distinguish between for example stress- or infection triggered fatigue, and that makes it difficult to draw any conclusion at all.

 

[Kalliope]

A Norwegian journal for physiotherapists has a short piece today on the developments on the PACE-trial. No new things in the article itself so won't bother with translation to English, but it is the first time the faults with the PACE-trial have been covered in media in Norway and therefore worth mentioning.
The first of many, I hope.

... and of course this gets criticised by prof. Gundersen (a fierce defender of PACE, debated in this thread).

Anyone up for a twitter-debate?

https://twitter.com/i/web/status/793481299667419136

"Manipulated results in PACE-trial"
Prof. Gundersen: "This is not correct. There is no manipulation and this is not something new as for now"

 

[Cheshire]

Editorial by @Keith Geraghty in The Journal Of Health Psychology:
‘PACE-Gate’: When clinical trial evidence meets open data access

Abstract
Science is not always plain sailing and sometimes the voyage is across an angry sea. A recent clinical trial of treatments for chronic fatigue syndrome (the PACE trial) has whipped up a storm of controversy. Patients claim the lead authors overstated the effectiveness of cognitive behavioural therapy and graded exercise therapy by lowering the thresholds they used to determine improvement. In this extraordinary case, patients discovered that the treatments tested had much lower efficacy after an information tribunal ordered the release of data from the PACE trial to a patient who had requested access using a freedom of information request.

http://m.hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf

 

[trishrhymes]

http://m.hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf

Wow, this is great, and published in the Journal of Health Psychology. @charles shepherd this should help your case for NICE guidelines change.

 

[AndyPR]

Is this right?

Within days of the release, patients examined the authors’ new data publication and the raw data found its way on to patient forums. It quickly became apparent that the improvements reported by White et al. (2011a) were much reduced when the original protocol thresholds (White et al., 2007) were applied. Using the trial’s original markers for improvement, the effectiveness of CBT and GET fell from the reported 59 and 61 per cent, to just 20 and 21 per cent, respectively (Figure 1).

Figure 1 being

As the source details state, the graph isn't from the patient analysis but the QMUL reanalysis.

I think this should have been used, from http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/

and figures in the article therefore should be CBT 7% and GET 4%.

Wouldn't that then make more sense, or am I confusing myself? @Keith Geraghty ??

 

[John Mac]

Isn't one for improvers and one for recovery?

 

[trishrhymes]

Yes, the one Keith Geraghty published is based on the QMUL analysis of the 'improvement' data. What patients added to this was the comparison with the 2011 claims and turning it into a graph showing how much the figures had shrunk.

I wondered why he hadn't used the recovery graph from Mathees et al on Virology, but thought perhaps he was leaving the field clear for them to be the first to get the recovery data into a peer reviewed journal, which I have gathered they are going to try to do. If he'd published this part of the data, journals could perhaps claim it had already been published, so they wouldn't do so. Just guessing here.

 

[TiredSam]

Prof. Gundersen: "This is not correct. There is no manipulation and this is not something new as for now"

Nothing to see here, move along ...
Pathetically derivative.

 

[TiredSam]

Science is not always plain sailing and sometimes the voyage is across an angry sea.

A much more satisfying nod to Sir Simon and his good ship .

 

[Valentijn]

I wondered why he hadn't used the recovery graph from Mathees et al on Virology, but thought perhaps he was leaving the field clear for them to be the first to get the recovery data into a peer reviewed journal, which I have gathered they are going to try to do.

It's also possible that Geraghty's paper was submitted after White posted the protocol-defined improvement figures, but before Mathees' re-analysis of the recovery data was posted. It usually takes some months for papers to be published, and I doubt Geraghty's was an exception.