That is a good question. Were they attempting to do something else first, before speaking out? Is it normal for them to take them time issuing a statement? Please tell me they haven't fallen to the dark side?
Simon has given me no indication of the 25% Group's position or whether they have been making representations to any institutions, agencies, government departments etc.
The group has a committee of management for which Simon is the Chair. I believe they employ a member of staff.
In the past, position statements (for example the 25% Group's DSM-5 submission) have sometimes been prepared by Margaret Williams, and Doris Jones has represented the group at public meetings.
I haven't seen any 25% Group literature for some years but the last figures I had for membership were, I think, around the 800 mark.
The group has two medical advisors - US, Dr Byron Hyde and UK retired paediatrician, Dr Nigel Speight, who has a particular interest in children and young people with ME and CFS and has advocated on behalf of families facing social services or court intervention.
I appreciate that the group is under-resourced and that many of the trustees on the committee of management are very unwell themselves. Nevertheless, I have been disappointed that it has taken four and a half months for the 25% Group chair to confirm that a position statement will be issued "soon".
In the past, the 25% Group has been a signatory to joint statements prepared by the ME Association and co-signed by the Young ME Sufferers Trust, Invest in ME and a number of local and regional ME support groups. The group had been made aware, several weeks ago, that the MEA were intending to issue a position statement and consideration might have been given to approaching the MEA board with a view to supporting a joint statement.
So although I don't think we need fear that the group has gone over to the dark side, I am disappointed that it has taken over four months for an indication that a statement will be issued.
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FOI update
On 17 June, the University of Bristol's FOI response to most of the questions raise by me on 16 May, had been:
"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."
In the last couple of days, I have contacted the U of Bristol's Information Rights Officer for certain clarifications around the publication of information and documents.
I have been advised that:
the information is intended for publication on the University of Bristol website (URL as yet unconfirmed);
that the Information Rights Officer will send me the link once the information is online;
that it is intended that the information relating to the ethics approval will be included in the online information and that it was hoped that the information published would cover questions 8-10 [of 15 May FOI request for information];
that it was hope that the information published would answer all of the questions posed in my original request;
that [University of Bristol] are hoping the information will be online before the end of August.
-----------
Which suggests that either the ethics team has already provided its opinion or that a decision is due before the end of the month.
My request for an internal review of the decision to withhold almost entirely all information and documents requested is due for response on or before 19 August.
The FOI to the
National Research Ethics Service (
copy on ME agenda site here) is due for fulfilment on or before 31 August
(assuming the information is held and assuming that they do not apply Clause 22(1)(a) of the FOI Act).
It is still not established which research ethics committee(s) are reviewing the application for ethics approval.
If anyone is interested in the process for regional REC applications there are two documents on my site:
REC Application flowchart
REC Application Researcher Training Pack
Although these documents set out the process (and there is more information on the National Research Ethics Service website) they do not answer the question: Do RECs rely solely on what is set before them by applicants in the application form and accompanying documents or is the committee permitted to obtain their own information in order to inform themselves around potential risk and safety issues when arriving at an opinion.
Applicants may be asked to provide further clarifications; or to submit modifications which may be reviewed by an REC in a different SHA domain. There is an appeals procedure if an unfavourable opinion is handed down - which would result in delays.
According to copies of correspondence between the funders and Dr Crawley, obtained by other individuals under FOIA, the funders have stipulated the requirement that the study must start by October.
From scrutinising several previous papers published by Dr Crawley and her research team, it appears that the South West Region REC 3 is the committee that her studies are reviewed by.
For example:
The study:
http://repository.peerproject.eu:80...1/PEER_stage2_10.1007%2Fs00787-009-0029-4.pdf
Anxiety in children with CFS/ME Esther Crawley, Linda Hunt and Paul Stallard
Esther Crawley (): Centre of Child and Adolescent Health, Hampton House, Cotham hill, Bristol, UK BS6 6JS Tel: 0117 331 0896 , Fax: 0117 331 0891, Email:
esther.crawley@bristol.ac.uk
Linda Hunt : Dept of Clinical Sciences at South Bristol, Institute of Child Life & Health, UBHT Education Centre, Upper Maudlin Street, Bristol UK BS2 8AE
includes the following:
"The local Research and Ethics committee* decided that the collection and analysis of this data was service evaluation and as such did not require ethical review by a NHS Research Ethics Committee or approval from the NHS R&D office (07/Q2006/48)."
*South West 3 REC (Previous name: North Somerset and South Bristol Research Ethics Committee)
I'll keep you posted.
Suzy Chapman
