SMILE trial data to be released

Amazing. Great work. This process looks so nerve-racking to go through, and so much work too. So pleased it turned out well.

I don't think I've even read the older the ICO judgement related to this.

"School attendance in the previous week, collected as a percentage (10, 20, 40, 60, 80 and 100%)."

Is that the data drawn from school records (and thus less prone to problems with reporting bias)? That should be useful for providing more reliable information on the impact of LP.

I've been seeing a few FOI things that present the disputes around ME/CFS/PACE/SMILE/etc in these terms:

To me, the physiological vs psychological dispute is largely besides the point with regards to PACE/SMILE/etc. I was wondering if this is an area where the Judge's summary (self-described as "crude", making me like the Judge) has got the wrong end of the stick, or is if @JohnTheJack presented the dispute in those terms in his own submissions?

I just don't understand this - why would anyone want to try to identify SMILE participants from this data? That sounds like a huge amount of work to do something that would not help anyone apart from those trying to make it more difficult to access trial data. There's no evidence anyone has tried to identify PACE participants from that data - and trying to do so would be completely stupid imo.

Thanks again for all your work John.

 

Of course, they promised to vet the self-reported school attendance with actual records from the schools. The official records were not reported, although they reported benefits for self-reported school attendance at 12 months. They provided no explanation for the absence of the official records.

 

Fear mongering is effective.

 

This FoI win is great news.

I have a small concern. Maybe I'm just always seeing the potential fall out but I fear this win will have the BPS group doubling down on lobbying to change the rules for FoI's so that they can win on their own terms next time or the time after.

They most definitely do not want their data out where it can be seen. And I do not think that they will just give up entirely so changing the rules so that they are exempt is really their only recourse.

Is there some way to monitor this?

 

Wouldn't it require an Act of Parliament to change the rules, and there is not much chance of getting a government to look at anything but Brexit for at least the near future.

 

Well there is that. But they are well connected and IMO doing the bidding of political overlords.

 

At a meeting in 2010 she told the REC that she had worked with Parker* and that he was good:

Extract of Minutes from South West 2 REC meeting held on 2 December 2010: https://www.meassociation.org.uk/20...to-lightning-process-and-children-with-mecfs/

As has been pointed out before, Prof Crawley’s apparent experience of having worked with Parker* and her belief that he was “good” appears to be inconsistent her claim to have been surprised by the positive result she reported.

[Edit: *see correction by @Esther12 below]

 

She didn't say Parker, but "the Bath practitioner who is good". I didn't think that was Parker, who is based in London.

It's still true that this claim about a "good" LP practitioner rather undermines her attempt to present herself as a rigorous sceptic surprised by her own results.

 

The SMILE trial write up says (https://adc.bmj.com/content/103/2/155) under method

and under acknowledgements

The latter suggesting Crawley had some contact with Parker, but that he was not the/a practitioner who participated in the study.

Neither the final published study or the published trial protocol (see https://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-444 ) seem to say anything about the Lightening Process practioner(s) participating in the trial other than how she/they were trained. However the trial protocol does present the idea that this is an independent arm's length investigation of the Lightening Process on the grounds that some 250 children a year participate in this intervention:

But the protocol acknowledgements say:

suggesting as he is not mentioned at this stage that Phil Parker only became involved once the full trial was underway.

The report on the feasibility study (https://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415) says

suggesting at this stage at least there was only one practitioner involved.

(An aside, rereading the published papers it becomes very obvious that the fact that the feasibility subjects' results were rolled over into the full trial was not made explicit at all.)

[added - the narrative of Crawley having no preconceptions about the outcome is also repeated "I was surprised that the LP provided additional benefit to specialist medical care" in Bristol Uni's press release on the publication of the final write up, see http://www.bristol.ac.uk/media-library/sites/ccah/cfsme/study-docs/Press Release 20 Sep Esther Crawley SMILE study final draft.pdf ]

 

I think this quote is interesting in the way it illustrates the completely bogus nature of 'qualifications' for these therapist-delivered treatments:

LP practitioners have completed a diploma through the Phil Parker Training Institute in Neurolinguistic Programming, Life Coaching and Clinical Hypnotherapy. This diploma is examined through written and practical examinations and is accredited by the British Institute of Hypnotherapy and NLP. Following the diploma, LP practitioners undertake a further course to learn the tools and delivery required for the LP after which they must pass both a practical and written examination. Practitioners undertake supervision and continuous professional development in order to further develop their skills and knowledge. They are regulated by the register of LP practitioners, adhere to a code of conduct and there is a Professional Conduct Committee that oversees complaints and professional practice issues.

If you don't even know if the treatment works how can there be any sort of yardstick by which to measure competence? What is the point of written and practical examinations in knowing about something nobody knows has any validity?

 

could be this Fiona Finch

eta: just noticed Peter has already mentioned her.

 

I notice on Fiona Finch's website she is also a qualified OT with some thirty years experience (see https://fionafinchcoaching.com/about-fiona/ ). In the ethical committee's consideration of 'converting' the feasibility study to a full study for SMILE there was discussion that the LP practitioner was not a qualified clinician and that this should be considered when the full study was launched. I don't know if this change happened or not, but it does suggest that Fiona Finch was not the practioner in the feasibility study.

However this does not rule her out as "the Bath practioner who is good", indeed her position as an OT might explain how Crawley knows her professionally, rather than just, as I had previously assumed, as an LP practitioner who had worked with some of Crawley's patients. It still leaves in the air how much contact Crawley had had with LP and/or LP practitioners prior to setting up the study, despite her assertions of complete scepticism.

Fiona Finch is acknowledged as an advisor in the feasiability write up and the full trial protocol, but Phil Parker is acknowledged in this role in the final write up. One option is that a different practioner was involved in the feasibility study, but Fiona Finch took over for the full study.

 

Isn't Parker also an osteopath?

 

They are drops in an ocean. Science is moving the other way with unstoppable momentum. No worries there, but their flailing and wailing should be emphasized in that regard. No credible scientist has valid reasons to prefer secrecy. It's a big tell that they have something to hide.

 

Thanks John. It is annoying that this view of the debate seems to so readily be accepted by so many in the UK. It's really unfair when we're being presented as engaging in a different debate to the one that we're actually working on. Amazing you managed to win despite this!