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Peter Kemp: The SMC and the PACE Trial - a deceptive partnership - Spinning the Results to the Media

CFS_for_19_years

Hoarder of biscuits
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USA
https://peterkempblog.wordpress.com...re-and-the-pace-trial-a-deceptive-partnership
The SMC have experts available for commenting on specific areas of science news. Their ‘expert’ for media comment on ME/CFS related news stories is Professor Sir Simon Wessely. Professor Wessely was a PACE Trial Centre Leader, member of the PACE Trial Management Group and collaborated in the design and execution of the research. For many years he has expressed his controversial opinion that ME/CFS are psychological illnesses that can be treated with GET and CBT. His bias is irrefutable and perpetuates to the present day. The Principal Investigators of the PACE Trial, Professors Peter White, Michael Sharpe and Trudie Chalder are all part of the ‘wessely-school’, i.e., supporters of Professor Wessely’s ideas. Professor Wessely has conducted and co-authored research into ME/CFS with all the PACE Trial Principal Investigators amounting to dozens of publications.

Therefore it was not surprising to many ME/CFS patients that media reporting of the PACE Trial was grossly biased. It is what might be expected when an organisation that promises ‘balanced’ coverage, gives an influential position to someone who is known for their bias.

Peter Kemp shows UK press articles that glorified the exaggerated results of the PACE trial.
 
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13,774
Thanks. I bet this is good... I feel like I'm struggling to keep up with all the PACE stuff coming out right now though. Bookmarked!
 
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2,158
Another thing for us to work on. Sigh!!!

How do we get the Wellcome trust, which is supposed to be supporting excellent science and medicine and has very distinguished trustees, to realise that they are funding a powerful and highly biased and politicised body like the SMC?

Is this another task for the ME organisations like the MEA or ME Action? I hate to ask, they're overwhelmed with stuff to do already. But I don't think letters from individual ME sufferers will cut it.

Any doctors or professors reading this willing to take it on?
 

Chrisb

Senior Member
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1,051
I read an opinion piece in yesterday's online Independent. Typically for me I can no longer find it.

A propos of something completely different it claimed that the standard crisis management technique used by PR firms was first to issue a statement saying there's nothing new in this, nothing to see here, time to move along. When the story continues, after a while a statement is issued saying this is an old story, it has already been dealt with (I paraphrase).

We seem to have had the first part of the strategy. Perhaps a nominal prize could be offered for the first sighting of the second.
 

TiredSam

The wise nematode hibernates
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2,677
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Germany
Perhaps a nominal prize could be offered for the first sighting of the second.

I claim my prize!

From here:

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/comment-page-6/#comments

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 chnaged 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.

In particular

Dave, all of this has been covered extensively in the trial FAQs here http://www.wolfson.qmul.ac.uk/current-projects/pace-trial/#faq.

and

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.

Looks like he's shot off both barrels at once. I wonder what he's going to do next?

And what's my prize?
 

Chrisb

Senior Member
Messages
1,051
I cannot hope to compete with the prize already proffered!

You are right @TiredSam Things must be desperate. I thought the idea was to allow a reasonable period of time to pass before moving on to the second part of the plan.

If we could anticipate the "what next?" it would be extremely difficult for them to use it without opening themselves to further ridicule. My guess is that the formal announcement of a retirement will soon be spun to some effect.
 

TiredSam

The wise nematode hibernates
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Location
Germany
As I commented on the Rehmeyer thread, that post by Wessley was a most gratifying demonstration of complete desperation. He was hammering away at his keyboard so frantically that he didn't have time for paragraphs, checking his spelling ("chnaged"), and made a number of unforced errors which were then taken to pieces brilliantly by subsequent commenters. He threw everything he had into it, and it wasn't much.

Finishing with a dismissive "Back to day job" was typical psychocrap, it looks like a throwaway remark but he planned it to imply how trivial this matter is and made sure it was the last thing we read, leaving an indelible impression on our subconscious minds. Oh he must have thought that was so clever. Pity is that the rest of his post was completely lacking in substance and easily shredded by subsequent posters. Pass the popcorn somebody ...
 

worldbackwards

Senior Member
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2,051
Talking about Wessely, here's en exchange of emails with John Peters: https://justpaste.it/ynlo
Just about to find that!
I have just written a very long e mail starting with the words 'how dare you use the word unevidenced'.


But I have deleted it. It doesn't matter. It won't do any good. The relentless campaign will continue - against the wrong people, the wrong cause and the wrong target


Nothing I can do about it. I will continue to stick my head above the parapet and defend good science because most people just too baffled, or too scared. I know for sure it won't make any difference at all to the campaigners, but that's not who I am talking to. I am talking to the kind of people I see in my clinic.
Witness the persecuted tone. Good.
 
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Sidereal

Senior Member
Messages
4,856
He's really starting to crumble. That was a pathetic display of desperation in Julie's comment section. He had no factual rebuttals to any of the points raised. "I'm too busy for you activist plebs and have to get back to my important work/vacation" and "they engaged in outcome switching cuz, erm, you know, previous studies used the same criteria" are not satisfactory answers to any of the severe problems with PACE.
 

TiredSam

The wise nematode hibernates
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On 24/09/2016 12:02, Wessely, Simon wrote:
You can look up the papers yourself We wrote at least two. I reckon there are ten or more.
See pace FAQs For rest.
You are not asking me questions because you don't know the answers like other people do but simply to prove me dishonest or whatever and I am just getting tired of this game.
Am off on holiday. Am just totally fed up with this charade.
Simon

I thought he was getting back to his day job, now he's off on holiday. If he must end every post with a dismissive comment that shows how trivial he thinks this all is, he could at least be consistent.
 

Chrisb

Senior Member
Messages
1,051
Perhaps we should politely ask him whom he would consider to be the right people, what the right cause and which the right target. And why.

I am sure a whistleblower should be entitled to a degree of protection.
 

A.B.

Senior Member
Messages
3,780
It is getting rather difficult to avoid concluding that there is an issue of distorted perception when Wessely defends the change to the recovery criteria with these words:

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.

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

Yes Simon, the physical functioning of an 80 year old fits the mental image of recovery of most people.
 
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