Group on Scientific Research into ME
11th December 2006 3-4pm Portcullis House
Meeting Summary

Chair: Dr Ian Gibson MP

In attendance:
Dr Ian Gibson MP, Richard Taylor MP, David Taylor MP, Michael Meacher MP, Des Turner MP, Lord Turnberg, Countess of Mar

Secretariat: Sarah Vero

Items for Discussion

1)	Ann Cryer MP resignation
Ann Cryer has resigned as she does not have the time to devote to this project due to her other work. She sends apologies to the Group

2)	Launch of the News Page
All members were advised the launch had gone ahead and advised they have the right to use the page if they wish.

3)	Responding to enquiries 
Members discussed the responses from their own constituency ME groups who had welcomed the report. They also discussed the volume and content of responses they had been receiving and agreed that Dr Gibson’s office would continue to provide responses to Inquiry queries, usually within 10-15 working days.

4)	Aftermath of the Report
•	Making the report count
The Group discussed how the report had been received and agreed that the response had been overwhelmingly positive. Most patients/patient groups had liked most or some of but not all of the report and welcomed it as a step forward in the debate.

5)	Distribution of the Report to relevant groups/organisations
The Group agreed that letters would go to the CMO (Chief Medical Officer), MRC(Medical Research Council), NICE (National Institute for Clinical Excellence) the Treasury, the DWP (Dept for Work and Pensions) and noted the report had already gone to the DOH (Department of Health).

6)	Letters to Ministers
See above

7)	Sending out to other MPs 
The Group agreed to send a copy of the report to all MPs via email with a covering letter.

8)	Format of the meeting in January with patients, groups and contributors.
The Group agreed the meeting should consist of one hour to discuss the contents of the report and one hour to discuss the future. Groups will be asked to submit their views before the meeting. SV will liaise with the Groups staff to arrange a date.  The meeting will be in a conference room in Portcullis House.

9)	Making research a priority – supporting scientists/forming a review panel
The Group discussed information from the CFS (Chronic Fatigue Syndrome) Research Foundation which indicated scientists are very reluctant to get involved in the ME field. It is a very difficult area to make progress in and young scientists are often not keen to pursue it. Therefore the Group felt getting research commissioned must be a priority.
The Group agreed to contact John Bell and Colin Blakemore (of the Academy of Medical Sciences and the Medical Research Council) to discuss forming a review panel of independent medical experts who are not psychiatrists and not already connected to ME who could objectively review the existing research.

10)	Any other business
The Group agreed to press ahead with putting in for a 90 minute debate on the subject of ME at the end of January. However, they will wait for written ministerial responses to the report before doing so as this may affect the terms of the debate.