MINUTES OF THE MEETING HELD ON
TUESDAY 18th NOVEMBER 2008
AT THE HOUSE OF LORDS
Doris Jones - 25% ME Group
Bill and Janice Kent - ReMEmber
Jane Colby - Tymes Trust
Peter Spencer - AfME
Sue Waddle - MERUK
Charles Shepherd - MEA
Margaret Mar - Chairman
Kathleen McCall - Invest in ME
The minutes of the meeting were amended and agreed.
There were no matters arising from the minutes.
After some discussion it was agreed that:
(i) Forward-ME would have no formal constitution.
(ii) Membership would be by invitation from the chairman.
(iii) For the time being, all references to ME would be ME and CFS.
(i) There was extensive discussion on the processes by which NICE arrived at the Guidelines; the reasons for the deficiencies that were pointed out at the time of publication, and the problems that have arisen since.
(ii) Judicial Review was to take place on 11 - 12 February 2009.
(iii) The possibility of separating CFS and ME was discussed. It was suggested that, as the NICE Guidelines were to be reviewed during 2009, Forward-ME should consider making a submission to NICE. This would be discussed at the next meeting.
(iv) It was agreed that the differing views on the NICE guidelines and Judicial Review would be respected.
A. Welfare Reform Green Paper
(i) The AfME and BRAME reports - No one written off: problems and potential solutions for people affected by chronic fluctuating conditions (see AfME website) and No one written off - BRAME's response to the Welfare Reform Green Paper (see BRAME website) were discussed briefly.
(ii) It was agreed that the need to overcome the problem of patient derived evidence being dismissed as 'grey material' was pivotal. The means by which this was done for the CMO's 2002 Report were discussed. Expert advice would be sought.
(iii) AfME and MEA would be monitoring experiences that PwME have with the new benefits system. Other charities and voluntary organisations were invited to contribute. The possibility of creating a common questionnaire was discussed. Interested members would initially combine their expertise in order to create an agreed format to be produced by early spring.
(iv) The questionnaire would be made available to anyone interested through the Forward-ME and respective charity and voluntary groups' websites. The results would be analysed and published.
B. APPG Inquiry into NHS Services for People with ME
(i) Whilst the Inquiry was welcomed in principle there were several practical problems including timing, questionnaire and resources, all of which would have to be resolved by the APPG.
C. Research Agenda
(i) It was agreed that charities and voluntary groups should act together to press the MRC to take more positive action to bring about biomedical research into disease mechanisms as a matter of urgency. This scientific research should address essential questions about the aetiology and pathogenesis of the illness with a view to developing preventative and curative treatments, as well as a diagnostic test.
(ii) The valuable contributions charities and voluntary organisations can make to research include patient participation, funding pilot studies and promoting research findings. To this could be added in future (subject to funding), funding research fellowships and PhD student grants.
(iii) AfME and MEA had been invited to a meeting with Professor Stephen Holgate and his new MRC advisory group. This would take place on 15 December 2008 and would include discussion about the framework for a workshop to be held in 2009. They would report back to the next meeting.
(i) Forward-ME had been registered on the internet and the website address was www.forward-me.org.uk. A web manager had been appointed.
(ii) The site would be kept simple, with links to the other charities and voluntary organisations which would be free to publish any documents they had submitted to Forward-ME if they wished.
(iii) All material to be put on the site would have the prior approval of members of the group.
(i) there was some discussion about a private letter written to a correspondent by the chairman in which she outlined her views on NICE and CBT/GET. She responded to several questions from the 25% ME Group.
(ii) It was suggested that Forward-ME could look at the shortcomings in NHS provision including waiting lists and availability of consultants. It was agreed that this was what the APPG was proposing to examine and that Forward-ME should not pre-empt the APPG inquiry.
The date of the next meeting to be arranged.