Lightning Process pilot for ME and CFS children: Funding letters
Press Release issued 2 March 2010: Research study to investigate a chronic childhood condition
For background to this issue see ME agenda 5 July report:
The University of Bristol Information Office is withholding virtually all information known to have been requested to date under Clause 22(1)(a) of the Freedom of Information Act.
Currently, no information on the study design, methods, objectives, recruitment process and research criteria for this proposed pilot study is available for public scrutiny.
The study is due to commence in September.
The University has confirmed that the research study, for which funding was secured last November, is still going through the ethics approval procedure but is withholding the names of the research ethics committee(s) considering the application for ethics approval.
Funding for the pilot has been awarded by the Linbury Trust and the Ashden Trust. Some funding related documents have been made available to members of the public in response to requests for specific information.
To virtually all questions submitted under FOIA, the University Information Office’s response has been the same:
“This information is intended for future publication when the study protocol and other related documents are published online. It is therefore exempt from disclosure under section 22(1)(a) of the Freedom of Information Act.
“The study is currently going through the ethics approval procedure and this information is expected to be published around August/September 2010. We cannot see that there is any public interest in disclosing this information before that time.”
Some limited documentation has been provided to two members of the public:
4 November 2009 | Linbury Trust to Dr Esther Crawley | Open PDF: Funding Linbury Trust 04.11.09
Note: The grant is conditional on the project commencing no later than October 2010.
24 November 2009 | Ashden Trust to Dr Esther Crawley
Note: At least part of the total grant is being paid out over three years: 2009/10, 2010/11, 2011/12.
8 March 2010 | Linbury Trust to Dr Esther Crawley
University of Bristol internal review
A request for an internal review of the responses received on 17 June 2010 from the University of Bristol was submitted yesterday, 22 July. A copy of the complaint will be published in the next post.