Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

Thank you @Jonathan Edwards

 

http://www.virology.ws/2019/06/03/t...nformation-request-to-bristol-about-lp-study/

 

Unresponsiveness in the face of obvious child abuse is a very bad look.

This could well be the biggest own goal of all. The whole thing is so repulsive and unethical, it can't be brushed aside.

 

At what stage does one bring to the attention of the Chairman of the board of Directors the potential for reputational damage to the brand?

 

Who is the chairman of the board then?

Edit: seems to be Jay Lippincott

 

Excellent letters @Jonathan Edwards and @dave30th.

I really am interested to hear how UoB might seek to still justify endorsing a treatment for children which they are instructed to remain silent about, and which there are no published details of. Continuing support after this has be so clearly pointed out to them would be the final nail in their reputational coffin I would have thought.

 

The strategy seems to be hoping it goes away. It works in politics. Not so much in science.

Which is, of course, a massive ethical failure. I guess they thought they were invincible, but fully embracing magical pseudoscience to the level of LP was a huge mistake. I guess it shows that the clear answer to "what were they thinking?" is: nothing, they were not thinking at all, ever.

 

The way Bristol has been dealing with the problems around Crawley's work seems deeply shady to me. What's going on with them promoting her TEDx talk that included false information, and that TEDx have now made inaccessible on youtube?

@Jonathan Edwards

Do we know if that was a part of SMILE? It seems like LP may be changing somewhat over time and I hear less about people being told to keep it secret than I did. I wonder if they've dropped/down-played that aspect? Also, Parker has argued that this is a myth (warning - Parker speaking is always such a cringe): https://lightningprocess.com/blog/lightning-process-podcast-2-secrets-and-secrecy-of-the-lp/

[Edited in a summary: PP makes some reasonable points about how it would be impossible to stop every who has been on an LP course from talking about what they experienced, says that it's unfair to say LP is 'secretive' when he has published a book on it, and then rambles on about neuro-nonsense for a while too.]

It's possible that the reports of 'secrecy' we've had were a result of just a few LP therapists. Who knows?

 

I take your point.

But there certainly seems to be secrecy around the process in that as far as I know what actually goes on has not been published. Normally when evaluating a treatment you do dose response and kinetic studies to establish which components are the active modalities. How do you do that if it is secret?

Of course in a sense this is true for CBT too. Nobody ever tells us what actually goes on in a CBT session or what 'cognitive strategies' therapists are taught to use.

I deliberately wrote 'we are told' because I do not know what actually happened, but the point of my letter is that there is reason to flag up concern. Much as Wessely flagged up concern with extrapolating from PACE to service provision because nobody knows what 'poorly trained' therapists might provide in the guise of CBT (which I suppose makes the point above).

 

The problem with reports of secrecy is that one can never know whether a change in the reported incidence is a result of a change in the practice or greater compliance with the strictures.

 

An odd thought occurred to me in relation to SMILE, which I shall post here since the thread is active.

Dr Crawley said she was not expecting the Lightning Process to work. So an apparent beneficial effect ought not to be due to 'expectation bias'. I think things in reality are more complicated, but it is intriguing.

 

yes but Prof Crawley says a lot of things, and her acting/presentation skills have improved over the years.

 

My impression is that the people delivering the programme are LP zealots..... so the expectation bias from them is probably very great.
I was ‘encouraged’ to speak to a LP practitioner on the phone by a friend who had done the programme and been ‘cured’ - certainly the person I spoke to was utterly convinced that LP was the answer to everything, and the manual reports that following the programme can even relieve the symptoms of MS.....
It’s brainwashing delivered by the brainwashed, with a hefty dose of guilt-tripping if you don’t get better.

 

I don't think so. It was in the paper Chalder published on patients' experiences with LP: "Several of the participants highlighted the secrecy aspect as unhelpful and difficult, resulting in prejudice and lack of understanding from people around them."

 

Yes, now you mention it I remember seeing that as I was checking sources.

 

Yes, that was my 'in reality more complicated' bit. I keep being reminded how insightful Keith Geraghty's comments on trial design were. It is presumably relevant to 'adaptive pacing' too - which was not expected to work by the people delivering it, even though it was expected to work by the charity supporting the trial.

 

And who can ever take what EC says at face value, or whether it was said just for rhetorical effect so it sounded all the more impressive that LP (supposedly) did work. When it comes to sleight of word and presentation, I would not take anything for granted.

 

Advertising fluff. "I never thought another washing powder would get my clothes even whiter ..." If you're selling something it's common practice to express amazement along the lines of "I never would have believed it ..."