Documents from the SMILE trial

Luther Blissett said:
These principles seem to be the opposite of what is taught in the Lightning Process, where you are taught to hide your true feelings/troubles/worries or you will jeopardise the chances to get better.
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Aren't they also told to not reveal 'secrets' about the Lightning process itself, else it won't work? I think I heard that somewhere? But someone would have to double check.
 
James Morris-Lent said:
Pardon me if I am off base here, but there seems to be a striking similarity to the process used by pedophiles to 'groom' victims and control them through isolation.
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I wouldn't go that far by any means, but I think there might be some common elements. One possibility being isolation of 'victims' away from people who might otherwise provide sanity checks on what was happening to them.
 
I guess we have to be a bit careful about this. I am basing my understanding of LP on adults who have broken their secrecy orders and spilled the beans on line. From these, I understand that LP involves requiring participants to keep secrets about what happens in the sessions and to pretend they are feeling better when they are not, under the threat that the treatment won't work if they talk about it or say they still feel ill.

I have no idea whether, for the version done with the children in the SMILE trial, these instructions of secrecy and lies were given to the children, or whether the 'training' was modified in any way to remove such instructions and allow the children to be honest and open. I simply don't know. Does anyone?
 
James Coyne commented on this last Sept ...

https://jcoynester.wordpress.com/20...nal-providers-in-esther-crawleys-smile-trial/

Christine Fenton, a retired Deputy Head of two high schools in the UK notes she was responsible for child protection in those roles. She expressed this concern about the basic conflict of Lightning Process and tenets of childhood protection:

LP participants are directed to not talk to others about it – keep secrets – to report positively regardless of their internal view is appalling to me. Child Protection has a key tenet ‘secrets are not ok’ – if an adult tells a youngster to keep a secret it is a form of control & creates an environment in which abuse can occur more easily.
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But note this does not itself clarify/confirm if the LP given to children does apply such secret-harbouring principles. Would be good to know one way or the other. But crucial to not go off half-cocked until we do.
 
Barry said:
I wouldn't go that far by any means, but I think there might be some common elements. One possibility being isolation of 'victims' away from people who might otherwise provide sanity checks on what was happening to them.
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Well put. They're certainly not equivalent things, but the similarity in patterns worries me. @Trish 's query is important to check. If kids were required to lie/keep secrets, that is an exploitative dynamic.

The same worries apply to adult subjects as well, but the calculations with regard to consent are different.
 
Jonathan Edwards said:
This looks important. We have already had the discussion about technicalities and how they are the fulcrum for the more important issues that are so hard to pin down. This look like another critical one. @dave30th has been making some useful headway with SMILE-related ethics. This may clarify the underlying concerns.
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My guess is that the trial will ultimately be withdraw because of the technical methodological shenanigans. These were serious violations and would or should doom any study. I think that will make it easier to get traction on the serious and very legitimate questions raised about the LP itself and whether it was ethical to ever allow this trial to happen. My choice to focus on the methodology was pragmatic--not because I wasn't concerned about the ethics of the LP itself. It was easy to make a clear-cut and irrefutable argument against what the investigators did from the perspective of basic scientific principles--like not changing your outcomes based on early results, and then not telling anyone about it.
 
Trish said:
I have no idea whether, for the version done with the children in the SMILE trial, these instructions of secrecy and lies were given to the children, or whether the 'training' was modified in any way to remove such instructions and allow the children to be honest and open. I simply don't know. Does anyone?
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That's part of my problem with it. Who knows the content, and what vetting of it was done by someone with the expertise to spot the potential problems?

As we are not allowed to know, I feel there should be some professional assessment of the potential for harm. I'd be interested in hearing some advice from Jane Colby, if someone would contact her on social media? Who has the authority to audit the content of it in this specific instance, and who in general?
 
Also, thinking further, how do we know that the Lighting Process in the SMILE trial is the same as the one given to children in other instances, even if it was modified in this instance? It's not even a problem with children with ME/CFS, it's potentially a problem for all children who go through it. What a mess.
 
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