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JohntheJack blog: THE SMILE TRIAL (part 1)

THE SMILE TRIAL (part 1)
Why the trial should never have been allowed in the first place.

The first of three blogs on the SMILE trial.

There is no evidence the Lightning Process (LP), a mish-mash of elements of cognitive behavioural therapy, neurolinguistic programming, hypnotherapy, life coaching and osteopathy, is anything other than quackery. For decades Phil Parker has made claims for its efficacy, including as a treatment for myalgic encephalomyelitis (ME), but no proper trial has ever supported these claims.

The Advertising Standards Authority (ASA) guidance is clear:
To date, neither the ASA nor CAP has seen robust evidence for the health benefits of LP. Advertisers should take care not to make implied claims about the health benefits of the three-day course and must not refer to conditions for which medical supervision should be sought.

There are people who claim to have been helped, of course, but such claims are made for all bogus therapies. It seems that some people are simply amenable to these interventions. In addition, perhaps there are those who have become stuck in a rut, experiencing a generic chronic fatigue, believing themselves to have ME, and who are helped to kickstart their lives again by the LP. Since there is no biomarker for ME, diagnosis of the illness can be difficult: 40% of patients in an ME clinic may not actually have ME.

There is currently no treatment for ME, so it is understandable that some patients would be easy prey for and would seek more information about interventions hawked about with exaggerated claims.
https://johnthejack.com/2017/07/02/the-smile-trial-part-1/
 

Demepivo

Dolores Abernathy
Messages
411
Part 2 is out

https://johnthejack.com/2017/07/05/smile-trial-part-2/

A report was published in December 2013. The trial has been over for almost four years but the results have yet to be published. A paper was submitted to The Lancet Psychiatry in August 2016 but was unsuccessful. A paper was resubmitted (to an unnamed journal, which may or may not be The Lancet Psychiatry) on 11th May 2017 (revealed in ‘Freedom of Information Request: Reference FOI17 193 – Information from the SMILE study’; decision currently under review).

Of the 157 eligible children, 28 declined to participate at the clinical assessment. The majority were ‘not interested’ (15) or said it was ‘too much’ (7).

Even after the trial started another three allocated to the LP group dropped out. A mere 50 out of a possible 157 (32%) completed the trial.
 
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Demepivo

Dolores Abernathy
Messages
411
As part of his investigations, John submiited a Freedom of Information request. It was rejected by Bristol Univeristy.

However he appealed to the Information Commissioner's Office (ICO) and got a reply

https://ico.org.uk/media/action-weve-taken/decision-notices/2017/2014139/fs50657225.pdf

Decision (including any steps ordered)

1. The complainant has requested information from the University of Bristol (“the University”) about the cost of a study into using a technique known as The Lightning Process in children with chronic fatigue syndrome.

2. The Commissioner’s decision is that section 22 is not engaged.

3. The Commissioner requires the Council to take the following steps to ensure compliance with the legislation.  issue a fresh response to the request which does not rely on section 22 of the FOIA.

4. The Council must take these steps within 35 calendar days of the date of this decision notice. Failure to comply may result in the Commissioner making written certification of this fact to the High Court pursuant to section 54 of the Act and may be dealt with as a contempt of court.
 

lilpink

Senior Member
Messages
988
Location
UK

lilpink

Senior Member
Messages
988
Location
UK
last para 45 the commissioner is giving them a chance to reject it again based on the "volatile climate" around ME research - EC still trying to use that BS argument

Very oddly worded. It appears they're still saying they have to comply just that they can use the original parameters of a FOIA request? It's a bit odd isn't it?
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Very oddly worded. It appears they're still saying they have to comply just that they can use the original parameters of a FOIA request? It's a bit odd isn't it?
Bristol realized they were losing so tried to raise a different reason for exemption. The IC said if they wanted to do that, they'd have to go through the whole process again, but they didn't.
 

Demepivo

Dolores Abernathy
Messages
411
The legal team at Bristol Uni aren't stupid. It is easier to hand over the information than face endless legal battles.

They saw QMUL spent £250 000 on legal fees on PACE FOIs

Am picturing EC throwing a tantrum & her teenage daughters telling her to calm down..