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Stat News: Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

Glycon

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
PACE researchers: Literally Benny Hinn.
instead of the afflicted being invited up to be healed (with no guarantee of success), the “shotgun” method encourages receptive, emotional individuals to believe they are healed. Only that self-selected group is invited to come forward and testify to their supposedly miraculous transformation. While I remained seated (seeing no investigative purpose to making a false testimonial), others are more tragically left behind. At one Hinn service a woman - hearing the evangelist’s anonymously directed command to "stand up out of that wheelchair!” - struggled to do so for almost half an hour before finally sinking back, exhausted (Thomas 2001).

There is even a further step in the selection process: Of those who do make it down the aisles, only a very few will actually be invited on stage. They must first undergo what amounts to an audition for the privilege. Those who tell the most interesting stories and show the greatest enthusiasm are the ones likely to be chosen (Underdown 2001).

This selection process is - perhaps not surprisingly - virtually identical to that employed by professional stage hypnotists.
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I strongly recommend reading the whole piece. It is quite... enlightening.
 
A

actup

Senior Member
Messages
162
Location
Pacific NW
Thank you @trishrhymes for your suggestion to read the Margaret Williams article alongside the re-analysis. The historical detail she provides on the Machiavellian process used to develop the bps model is an eyeopener. A truly great read!

I was especially intrigued by the following comment she makes re: Peter White's admission( 2004) that certain immunological markers change significantly for the worse after me/cfs patients exercise. It's on pg 17.
http://www.margaretwilliams.me/2016/proof-positive-revisited.pdf
 
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Hutan

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Glycon said:
PACE researchers: Literally Benny Hinn.
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Ha, yes, there does seem to be quite a similarity between PACE researchers and others pushing CBT/GET cures and faith healers:

Nolen (1974, 101) stated he did not think Miss Kuhlman a deliberate charlatan. She was, he said, ignorant of diseases and the effects of suggestion. But he suspected she had “trained herself to deny, emotionally and intellectually, anything that might threaten the validity of her ministry.” The same may apply to Benny Hinn. One expert in mental states, Michael A. Persinger, a neuroscientist, suggests people like Hinn have fantasy-prone personalities (Thomas 2001). Indeed, the backgrounds of both Kuhlman and Hinn reveal many traits associated with fantasy-proneness, but it must be noted that being fantasy prone does not preclude also being deceptive and manipulative.
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Lolol, Wessely has lowered himself to try to defend PACE by commenting on the article;
Part of the message from the Simon Wessely land of la-la said:
2. Nothing at all has emerged to alter or contradict its key findings. These are that two treatments (CBT and GET) are superior to two others (pacing and standard medical treatment). All four approaches are safe. The effects of CBT and GET are modest but still,worthwhile especially as at moment and for the last 25 years there has been nothing better
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https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/#comments if you want to see how deluded the man (still) is.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
W

worldbackwards

Senior Member
Messages
2,051
Big Si said:
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.
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Oh, of course.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
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.
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Not quite sure if that's true Sir Simon. Full marks for evasiveness again though.
 
Y

Yogi

Senior Member
Messages
1,132
Sidereal said:
Pure desperation coming out of the bunker.
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Another Great article by Julie.

Typical evasive comment by Weasel. Good free entertainment provided to go with the popcorn.

It really is desperate stuff now clinging on to the PACE trial by Wessely knowing that his beloved HHS PACE is sinking fast.

Your bunker comment reminded me of Hitler Downfall parodies:

https://www.youtube.com/playlist?list=PLD322FE529041CD24

I think we need a PACE trial version of this now.
 
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Y

Yogi

Senior Member
Messages
1,132
Here is his full response:

Simon wessely
SEPTEMBER 23, 2016 AT 5:38 AM
Sorry to spoil the party but some cold facts are necessaey
1. The PACE trial remains an excellent trial and a model of how to deliver a complex intervention RCT. Read the 2012 Lancet paper again. Check it against the CONSORT statement. You will see it is 100% compliant.
2. Nothing at all has emerged to alter or contradict its key findings. These are that two treatments (CBT and GET) are superior to two others (pacing and standard medical treatment). All four approaches are safe. The effects of CBT and GET are modest but still,worthwhile especially as at moment and for the last 25 years there has been nothing better
3. As others note this does not speak to the causes of CFS but only to management. For avoidance of doubt all the serious clinicians and academics who work in this area know this is genuine condition that causes much misery to patients, friends and family.
4. Clearly we need better treatments but until and unless we do, doctors can safely recommend CBT and GET to patients. Indeed they could and did before PACE – it’s findings were entirely congruent with the previous literature, just that PACE was larger. In my country (UK) there was already sufficient evidence to recommend both therapies in our NICE guidelines before PACE was published. PACE will not be retracted because there is no reason to do so, it is fully CONSORT compliant and so on, but if it had not happened the guidelines would remain the same.

I have written a commentary here on the main PACE paper outlining the basic principles of a sound RCT and why PACE more than adheres to them
http://www.nationalelfservice.net/o...syndrome-choppy-seas-but-a-prosperous-voyage/

I realise that this will not be a popular post. That’s sad. But I think people need to know there is another story here and one that might explain why it is that people continue to cite the Lancet paper and why it’s results whilst not earth shattering are sound.

Finally I should add that I played a part in early days of developing CBT as a management approach to CFS, carried out one of the early RCTs and so on, and know personally all the PACE authors. I am not therefore neutral on this topic, and I continue to recommend CBT to my patients with CFS if they want it. I was not however an author on the PACE study .

Simon Wessely
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Simon wessely
SEPTEMBER 23, 2016 AT 7:13 AM
Dave, all of this has been covered extensively in the trial FAQs herehttp://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.
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