Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

@Andy, @Trish, thank you for the welcomes and your replies!

This is such a shame. I feel like by not explaining what the Lightning Process is they are glossing over the pseudoscientific aspects of it. If they actually published their theories it would be possible to look into them and and prove or disprove them, but istead they jusy mystify everthing.

But that isn’t Phil Parker’s view of ME, as far as I understand it. He writes in his book that ME is a physiologial illness, and that the body is in a state of imbalance, where for instance the immunsesystem and digestive system are affected.

I guess the authors could have intended to use the Lightning Process for a different effect than what Phil Parker designed it for, but then they would also be using it for a different purpose than has been done in Lightning Process all these years ME patients have been doing it, and for a different purpose than someone seeking out LP on their own would be getting from their coach. I find it strange that this is not mentioned in the publishing, but I don't know what's usually expected in a publishing.

I guess I'm mostly wondering: by researching a method by someone as pseudoscientific as Phil Parker, are they accepting and adopting his pseudoscience, or does it not matter to them either way?

Wow! Makes my heart hurt.

I’m trying to look for writings from the BPS side for their theories of ME and their explanations of why GET or LP would be recommended as treatments. Maybe I’m wrong, but I feel like it would be easier to argue against these people if I actually had an idea what their theories are, but it almost seems like there are none?

 

You will have to excuse Crawley. She imagined that a supposed threat to cut someone's balls off might have been directed at her.

 

This has been my understanding of their view too, but it sounds too incredible that someone could actually have that theory, so I've been afraid I'm completely misunderstanding them.

Thank you for the link!

 

In their own words, from PACE:





TL;DR: as fictitious as Game of thrones. The details are irrelevant, only meant to give the appearance of having a hypothesis. A few times Sharpe even said they have no model and only compared (their own made-up) treatment options. It's conversion therapy with a few extra steps.

 

Chalder 'explains' their approach here
https://www.s4me.info/threads/13-march-2019-chalder-‘medically-unexplained-symptoms’-my-clinical-and-research-journey-over-30-years.5576/page-3#post-152193

eta: Crawley's take
https://www.s4me.info/threads/esther-crawley-what-drives-her-plus-quotes.1139/

 

https://peterkempblog.wordpress.com/2019/09/18/observations-on-the-lp-trial-for-children-with-cfs/

https://twitter.com/user/status/1174594379526393856

 

@Peter Kemp

 

Explained so plainly and clearly that you'd have to force your head in the sand not to understand the implications.

 

I'm not sure whether we have seen the PDF layout of this before:
Editor's note on correction to Crawley et al. (2018)
http://www.diva-portal.org/smash/get/diva2:1374495/FULLTEXT01.pdf

 

Require:

Compulsory:

Words. Do they matter? Does their meaning matter? No? OK, then. How commonly does that happen? Often? Always? Sometimes? Impossible to say, it takes outsized effort just to get BMJ to acknowledge, let alone require to act.

Just fold. The journal serves no purpose anymore. Like a security company that somehow managed to have their headquarters stolen. Not stolen into or burglarized, but the entire building actually stolen.

This is happening openly and almost no one outside of trying to protect ME patients seems to care. The entire medical publishing industry is incapable of meeting its basic obligations or enforcing its own rules in the face of political pressure. Incredible.

 

That choice of words "failure to enforce that policy" is interesting. It suggests that because the failure was that of the BMJ to enforce its own policy, and because the authors were not responsible for that breach, there is some legal obligation preventing retraction.

 

Yes I wondered what that meant exactly. It really was the investigators' failure to fully inform the journal of the facts.

 

It was the journal's fault for assuming they could trust Crawley & co's claim that their trial was prospectively registered. It wouldn't be fair to blame Crawley and her co-authors for that editorial failing.

 

No, but it is entirely right to blame her for being untrustworthy on the issue in the first place. The journal's error does not itself warrant withdrawal, but Crawley's does. Which is maybe why the journal focused on its own failing.

 

"""The process has additionally involved seeking assurance from the authors that the change in primary outcome was not influenced by (positive) findings in the feasibility phase."""

Nick Brown you are not supposed to say these things out-loud! Has Michael Sharpe been advising you on your communications strategy?

But seriously, this shows the whole process to be a farce that apparently anybody can feel free to take advantage of.

 

If you can't do this as an undergraduate because it us so basically wrong, it shows how badly the process has been corrupted.

 

To facilitate retrieving @dave30th 's excellent STAT article on SMILE (I think it's the best and most succinct account of what happened so far) :

BMJ should retract flawed research paper on chronic fatigue syndrome
by David Tuller, Statnews, Dec 2019

https://www.statnews.com/2019/12/13...awed-chronic-fatigue-syndrome-research-paper/

Forum thread here.

 

The ‘Lightning Process’: implausible, unproven, hyped and expensive

https://edzardernst.com/2020/06/the-lightning-process-implausible-unproven-hyped-and-expensive/