Peter White (PACE) in the Guardian

[Sasha]

If I click on the original link, I get it:

https://www.theguardian.com/comment...tients-suffer-put-off-treatments-our-research

...and it comes up if I enter the title into the search box.

 

[Sasha]

I don't see it on the Opinion page:

https://www.theguardian.com/uk/commentisfree

But I'm not sure where to look.

 

[Marky90]

Jesus christ, let`s take them to court for deliberate fraud! Would be the easiest crowdfund ever.

 

[Jonathan Edwards]

I don't see it on the Opinion page:

https://www.theguardian.com/uk/commentisfree

But I'm not sure where to look.

I wonder how Old Bones found it originally. I don't know where it would be other than on the opinion 'page'.

 

[mermaid]

Can someone come up with the Wessley quote admitting that the data was altered to make it more like what was expected (and that is ok apparently)?
Just putting my shoes on to walk out the door...

Was it in this piece that Wessley wrote......http://www.nationalelfservice.net/o...syndrome-choppy-seas-but-a-prosperous-voyage/
'Small corrections to the route taken were made on the way, but these were of little significance.'
e. Changes to original protocol
The researchers changed the way they scored and analysed the primary outcomes from the original protocol.

'The actual outcome measures did not change, but it is true that the investigators changed the way that fatigue was scored from one method to another (both methods have been described before and both are regularly used by other researchers) in order to provide a better measure of change (one method gives a maximum score of 11, the other 33). How the two primary outcomes (fatigue and physical function) were analysed was also changed from using a more complex measure, which combined two ways to measure improvement, to a simple comparison of mean (average) scores. This is a better way to see which treatment works best, and made the main findings easier to understand and interpret. This was all done before the investigators were aware of outcomes and before the statisticians started the analysis of outcomes. The changes were approved by the two independent oversight committees. The very detailed analysis plan, including these changes, was published, and these changes and the reasons for them were also described in the main paper.'

 

[Gijs]

Professor White CFS/ME patiënts don't have Stockholm syndrome, so leave them alone, they won''t miss you.

 

[AndyPR]

White seems to believe in digging your way out of a deep hole.

Look out Australia!!!!

 

[Large Donner]

Peter White:

And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.

So can you be ill everyday and still be recovered from yesterdays episode? Just how long is "patient’s present episode of illness"?.

If I crash due to GET and then two weeks later get back to base level crap the kind of crap that was not induced by GET and kept at that equilibrium due to pacing does that mean I have recovered.

I guess I have recovered from the effects of GET? So if you go from house bound to bed bound after course of GET and are bed bound for a month then you get back to being house bound after a month have you recovered? Cos surely its recovery form "patient’s present episode of illness?"

Wow the recovery definition just gets more and more imaginative!!

 

[Research 1st]

Can someone come up with the Wessley quote admitting that the data was altered to make it more like what was expected (and that is ok apparently)?
Just putting my shoes on to walk out the door...

Your wish is my command.

Simon wessely
SEPTEMBER 23, 2016 AT 7:13 AM
Dave, all of this has been covered extensively in the trial FAQs here http://www.wolfson.qmul.ac.uk/current-projects/pace-trial/#faq. Nothing dodgy and nothing to hide. It is perfectly acceptable to make changes to your analytic plan or indeed protocols during the conduct of a trial so long as you explain why, get TSC/DMEC approval, document it fully and make it clear in the publication. All of that was done. The 2012 Lancet paper doesn’t deal with recovery anyway, that was covered in a secondary later publication. In essence though they decided they were using a overly harsh set of criteria that didn’t match what most people would consider recovery and were incongruent with previous work so they changed their minds – before a single piece of data had been looked at of course.

Nothing at all wrong in that- happens in vast numbers of trials. The problem arises, as studies have shown, when these changed are not properly reported. PACE reported them properly. And indeed I happen to think the changes were right – the criteria they settled on gave results much more congruent with previous studies and indeed routine outcome measure studies of which there are many. And re analysis proves the wisdom of that to be honest. But even then, using criteria that were indeed incongruent with previous work and clinical routine outcome studies, the overall pattern remains the same. CBT GET superior to pacing SMC. Most people who work in the field agree with them by the way – the criteria in the recovery paper itself (not the main lancet paper which never dealt with ) approximate with all the previous work – reasonable and meaningful but not the new penicillin.

Am not going to respond to more comments on the same lines except to say it’s very likely that this has been addressed before and covered in previous responses by the authors and the trial FAQs. If you want to use the original recovery criteria you can, but I think that the ones that the trialists finally decided upon are more realistic to patients and clinicians alike . And finally it’s not a surprise that if you use extremely harsh criteria you get lower frequencies- no one has pointed out that the original criteria did indeed give recovery rates for Pacing and SMC that are also pretty daft and don’t match patient experience of either. People do get better on pacing and even just TLC- it’s just that more get better with GET and CBT, but still not enough. OK, enough already. Back to day job.

Source:
Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
By Julie Rehmeyer
21/09/2016
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/comment-page-6/#comments

 

[adreno]

However, if their campaign puts people off trying CBT and GET, it will be the patients themselves who will suffer the most."

Thanks Peter, but I'll take my chances.

 

[Kati]

If my team’s research on ME is rejected, the patients will suffer
Peter White

Sounds just like Donald Trump.

 

[trishrhymes]

It is hard to find on the Guardian website, I used the link given at the beginning of this thread which took me straight to it, but it's not listed (yet) on the Opinion page. It can be found by using the search function.

I have added my comment and up-ticked lots of good comments. Great to see so many making such good points. I quoted bits from the Huffington Post Millions MIssing piece by Maureen Hansen.

 

[Aurator]

Peter White's unhappy kind of persistence was identified many years ago now by a certain German statesman:


"The essential English leadership secret does not depend on particular intelligence. Rather, it depends on a remarkably stupid thick-headedness. The English follow the principle that when one lies, one should lie big, and stick to it. They keep up their lies, even at the risk of looking ridiculous."
Joseph Goebbels.

Original German:

"Das haupt-sächlichste englische Führungsgeheimnis ist nun nicht so sehr in einer besonders hervorstechenden Intelligenz als vielmehr in einer manchmal geradezu penetrant wirkenden dummdreisten Dickfelligkeit zu finden. Die Engländer gehen nach dem Prinzip vor, wenn du lügst, dann lüge gründlich, und vor allem bleibe bei dem, was du gelogen hast! Sie bleiben also bei ihren Schwindeleien, selbst auf die Gefahr hin, sich damit lächerlich zu machen."

Did anyone spot the key word? It's Dickfelligkeit.

 

[PennyIA]

Has anyone posted a comment that there seemed to be a lack of reporting of adverse reactions? Many, MANY people dropped from the study and the questions and concern is that if those patients were receiving GET and got worse, that they dropped out because it wasn't as safe as it's promoted as being and had to drop out in order to protect their own health. If the reason for patients dropping out were unrelated to adverse outcomes it's difficult to determine based on the lack of information.

 

[trishrhymes]

I hope all the great stuff appearing on this thread like the Wessely quotes are being added to the Guardian comment, not just in here.

 

[Chrisb]

I have no difficulty in seeing the article currently on the UK page, scrolling down to the Society section, though not on the Opinion page.

The comments make this look a massive own goal for the SMC.

 

[Simon]

I may have this wrong, but is Peter White arguing that all patients should have the chance to experience response bias on questionnaire scores? Because there's no evidence of useful gains on objective measures such as fitness, or how far patients can walk. Patients deserve so much better than this.

It's one thing to run a study based on your own strongly-held beliefs about therapies you offer. It's another to keep promoting them when the evidence from you study is that they don't provide real-world benefits. We need to research explore new avenues to find therapies that give patients meaningful benefits.

 

[acouchy]

Unbelievable yet at the same time I am not surprised. I am seriously beginning to believe that some people live in a parallel universe that every now and then crosses paths with reality. Only way I can even begin to comprehend how they see things so differently. Maybe CBT would help.

 

[user9876]

I have put a comment in but it has immediately disappeared.

The guardian moderators commonly censor comments critical of the pace trial.

 

[Esther12]

Has anyone posted a comment that there seemed to be a lack of reporting of adverse reactions? Many, MANY people dropped from the study and the questions and concern is that if those patients were receiving GET and got worse, that they dropped out because it wasn't as safe as it's promoted as being and had to drop out in order to protect their own health. If the reason for patients dropping out were unrelated to adverse outcomes it's difficult to determine based on the lack of information.

Drop outs weren't that high in any groups, and I suspect thatthey took much more care to minimise harm in PACE than is normally taken in clinical care.