Bristol Uni refuses to disclose how much money paid for quack therapy in SMILE clinical trial

video-screenshot-parkerThe University of Bristol has refused to provide basic information concerning how much Phil Parker, a proponent of a quack therapy, was paid for training and treatment provided to patients provided in a clinical trial conducted by Professor Dr. Esther Crawley. I reproduce the response to the Freedom of Information Request below.

  • I previously blogged  about Esther Crawley’s MAGENTA trial of graded exercise for chronic fatigue syndrome in children and adolescents. I raised numerous concerns about the risk and benefits of parents enrolling their children in this trial.
  • I pointed to Crawley’s previous ignoring of the basic rights of children enrolled in another trial, the SMILE trial.
  • I raised issues about the financial transactions between Crawley and Phil Parker, a proponent of the quack Lightning Process treatment. In response to consumer complaints, Phil Parker had been disciplined by the UK Advertising Standards Authority and forced to remove claims about his ability to treat and even cure chronic fatigue syndrome from his website.
  •  Aside from a scientifically unwarranted clinical trial of a quack treatment, Esther Crawley failed in her responsibility to parents and the children participating in the SMILE trial by not publishing the results in a timely fashion. There was no basis for promising any clinical benefit to the children, and so the value of participating in the trial was confined to the contribution to science from any resulting peer-reviewed publications that presented results. Only unselected and therefore unscientific testimonials were published. [See my blog post for further details.

explict-parker-ad

The Freedom Information Request reproduced below was intended to obtain information about the money flowing to Parker and also any plans to publish the SMILE trial data.

——– Forwarded Message ——–

Subject: Re: SMILE study
Date: Mon, 3 Oct 2016 12:08:19 +0100
From: University of Bristol FOI mailbox <freedom-information@bristol.ac.uk>
To: John Peters <johnpetpub@gmail.com>

Dear Mr Peters

Thank you for your recent Freedom of Information request, as below:

This request concerns this study:

The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study)  

http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415

The Principal Investigator is listed as Esther Crawley and I am writing to you as the presumed responsible public authority.

  1. Please give the total cost of the study.
  1. In the trial protocol (1), it is stated: ‘Families currently pay approximately £620 to attend the Lightning Process course.’ Please say how much was paid for children in the study to attend ‘Lightning Process’ courses. If possible, please give the cost per child attending and the overall cost.
  1. Please say if any discount or special deal was arranged with the providers of ‘Lightning Process’ courses. If there was a discount or special deal negotiated, please say what it was.
  1. It is said that Phil Parker, the creator of this intervention, receives commission on each course undertaken. Please state whether you are aware of any commission paid for any of the courses provided as part of the study. If you are aware, please say what commission was paid. Please also state if there was any discount or special deal done with Phil Parker regarding his commission, and if so what it was.

In response to parts 1-3, this information is held by the University but is exempt from disclosure under section 22(1) of the Freedom of Information Act as it is information intended for future publication. Further information about the SMILE and documents containing the information you have requested are due for publication but there is no fixed date for publication at present.

If it assists, the study protocol is in the public domain and available at: https://www.ncbi.nlm.nih.gov/pubmed/24370208

The University does not hold any recorded information in relation to part 4.

Review procedure

If you are not satisfied with the University’s response to your request you may ask the University to review the response by writing to:

Director of Legal Services

Secretary’s Office

University of Bristol

Senate House

Tyndall Avenue

Bristol BS8 1TH

Email: freedom-information@bristol.ac.uk

enclosing a copy of your original request and explaining why you are requesting a review. The full review procedure is set out at:  http://www.bristol.ac.uk/secretary/foi/review-procedure/

Your request for internal review should be submitted to us within 40 working days of receipt of a response.

If you are not satisfied with the outcome of the internal review you may also contact the Information Commissioner’s Office at:

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

www.ico.gov.uk

Best wishes

Freedom of Information Team

University of Bristol