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

Trial By Error: A Freedom of Information Request to Bristol About LP Study

On Friday, I sent the following request to the University of Bristol. I cc-d Sue Paterson, the director of legal services. I received an automatic reply alerting me that Bristol was behind in responding to FOI requests, meaning that a response is unlikely within the mandated period of twenty working days.

One point of this request is to try to find out if Bristol took any action when it learned of the concerns about the conduct and reporting of the Lightning Process study. The seriousness of the documented ethical and methodological violations should have alarmed anyone at Bristol who found out about them.
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http://www.virology.ws/2019/06/03/t...nformation-request-to-bristol-about-lp-study/
 
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.
 
Barry said:
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.
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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

Perhaps the most worrying aspect is that we are told that Lightning Process subjects are told to ‘keep secret’ information about treatment and progress. ‘Keeping secrets’ is a central red flag in safeguarding of children.
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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?
 
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Esther12 said:
Do we know if that was a part of SMILE?
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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).
 
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.
 
Jonathan Edwards said:
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.
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She said this about herself but presumably the person (I won’t say therapist don’t want to dignify them with that title) delivering the LP element expected it to work and participants likewise- it was being given under auspices of NHS which would have given credibility to patients.
 
There's a difference between the investigator having an expectation bias and the person being given the treatment (and their parents).

Presumably the consent process screened out the most skeptical of families. Simply being assigned to a treatment (as opposed to a control situation) would suggest that there is a higher chance of a benefit. After all, why would someone go to the trouble of a study if there was no hope at all of a benefit from the treatment?

And then I would have thought the first hour of the course would set up the kids for a pretty extreme expectation bias.
 
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.
 
Esther12 said:
It's possible that the reports of 'secrecy' we've had were a result of just a few LP therapists. Who knows?
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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."
 
NelliePledge said:
She said this about herself but presumably the person (I won’t say therapist don’t want to dignify them with that title) delivering the LP element expected it to work and participants likewise-
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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.
 
NelliePledge said:
She said this about herself but presumably the person (I won’t say therapist don’t want to dignify them with that title) delivering the LP element expected it to work and participants likewise- it was being given under auspices of NHS which would have given credibility to patients.
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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.
 
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