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!

Andy said:
Of course, not knowing what exactly was done means that any attempt to replicate this study is impossible, as it can't be guaranteed that the same process is used.
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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.

Andy said:
I'm not so sure that they are based on different theories. GET and CBT are based on the idea that we have false cognitions about the limitations of our bodies, which seems to be very much the same as the broad concept behind the LP.
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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?

Trish said:
This allowed them to pretend the long term trial showed the treatments worked, when in fact it showed they didn't.
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Wow! Makes my heart hurt.

Trish said:
As to what theory of ME/CFS the different practices like LP, CBT and GET are based on, in a way that is irrelevant, since none of the theories have any biological evidence base. They just make up theories to justify their treatments and make them sound scientific.
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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?
 
rainy said:
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.
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As far as I can see the BPS theories of ME are that we get an infection, then when it's gone we think we're still ill, so we are afraid to be active, and become deconditioned. The directive CBT is aimed at persuading us we're not physically ill, so can start exercising, and the GET is aimed at getting us gradually exercising so we get are no longer deconditioned.

In other words, they see it as a psychosomatic illness. Prof Sharpe's awful recent article, discussed here, described it as 'illness without disease'.

Other BPS people talk about HPA axis and stress, or central sensitisation.
 
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Trish said:
As far as I can see the BPS theories of ME are that we get an infection, then when it's gone we think we're still ill, so we are afraid to be active, and become deconditioned.
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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!
 
Trish said:
As far as I can see the BPS theories of ME are that we get an infection, then when it's gone we think we're still ill, so we are afraid to be active, and become deconditioned. The directive CBT is aimed at persuading us we're not physically ill, so can start exercising, and the GET is aimed at getting us gradually exercising so we get are no longer deconditioned.

In other words, they see it as a psychosomatic illness. Prof Sharpe's awful recent article, discussed here, described it as 'illness without disease'.
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In their own words, from PACE:

pace-cbt-model.jpg

pace-get-model.jpg

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.
 
rainy said:
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!
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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/
 
Observations on the LP trial for children with CFS

The authors of the LP trial state that with the SF-36 Physical Function subscale (SF-36PF) “Higher score=fewer symptoms, better function.” This is incorrect.

The SF-36PF provides no information about the number of symptoms that a participant has. A participant with one symptom, e.g., severe chronic pain, could have an SF-36PF score of zero, equivalent to being ‘limited a lot’ for all 10 items in the questionnaire. Whereas a person with multiple symptoms could score 100, showing that they are not limited at all in carrying out any of the activities.

As this misrepresentation of the properties of the SF-36PF is obviously made-up, it is reasonable to question whether the authors intended to exaggerate the importance of their primary outcome measure, which is further suggested by the chart which they published for the measure. Figure 1 shows how the SF-36PF primary outcome measure data was represented in the LP paper, and figure 2 shows the same data in a full scale (0 to 100) chart, which does not exaggerate the small difference between the LP group and the Specialist Medical Care (SMC) control group.
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https://peterkempblog.wordpress.com/2019/09/18/observations-on-the-lp-trial-for-children-with-cfs/

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

Finally, I cannot help wondering if some of the researchers got hypnotised during the trial. The published findings are selective and exaggerated and the interpretations suggest a lack of critical and objective analysis. The paper states that: “there was good evidence that SMC+LP was more cost-effective than SMC alone”. This round-about claim that the LP is an effective treatment for CFS is not supported even by the published data. ‘Good evidence’ that the LP was effective would be participants attending ALL their schooling and being able to do the same sports that healthy kids enjoy. These objective outcomes would show that the LP accurately and effectively addressed the underlying cause(s) of participants’ CFS. But the evidence shows that the LP got nowhere near these results. Instead, the evidence shows that the average LP participant still had substantial physical limitations, they were often absent from school and were only marginally and subjectively better than an average control participant. Furthermore, the evidence suggests that some of the LP participants acquired a distorted and over-optimistic perception of their health and physical abilities which influenced how they rated subjective measures.
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Dolphin said:
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
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BMJ policy requires prospective registration of randomised trials but we do not consider a failure to enforce that policy grounds for retraction
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Require:
verb
  1. need for a particular purpose.
  2. cause to be necessary.
  3. specify as compulsory.
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Compulsory:
adjective
  1. required by law or a rule; obligatory.
  2. involving or exercising compulsion; coercive.
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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.
 
Esther12 said:
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.
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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.
 
James Morris-Lent said:
"""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.
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If you can't do this as an undergraduate because it us so basically wrong, it shows how badly the process has been corrupted.
 
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