UK CFS/M.E. Research Collaborative Executive Board
Summary of discussion 19 July 2013
Professor Stephen Holgate (SH), Southampton University – Chair
Dr Esther Crawley (EC), Bristol University – Vice Chair
Sonya Chowdhury (SC), Action for M.E. – Secretariat
Mary-Jane Willows (MJW), Association of Young People with M.E.
Anne Faulkner (AF) and Peter Muir (PM), CFS Research Foundation
Dr Neil Abbott (NA), ME Research UK
Professor Julia Newton (JN), Newcastle University
Professor Paul Moss (PM), Birmingham University
Joe McNamara (JM), Medical Research Council
Dr Charles Shepherd (CS), M.E. Association
Ed Sykes (ES), Science Media Centre
Matthew Wright (MW), Association of Young People with M.E.
Professor Peter White (PW), Barts & The London School of Dentistry & Medicine
Professor Paul Little (PL), Southampton University
Professor Hugh Perry (HP), Southampton University
1. Welcome and introductions
SH opened the meetings and welcomed AF to the meeting.
2. Minutes and matters arising
The minutes of the last meeting held on 22 May 2013 were approved.
There are two outstanding actions in addition to those discussed under agenda items below:
• Charities have met to discuss the information in future press releases re prevalence. This is still being progressed.
• EC has yet to invite an early career researcher to the Executive Board.
3. Membership of the Collaborative
Work has progressed on information about what membership means, cost and process and is almost ready for implementation. SC will oversee the membership process in the Secretariat role with the Executive Board agreeing applications at meetings. Membership packs will be available soon and will be accessible via the charities’ websites and will be sent to all attendees at the Launch. The intention is that membership should be inclusive and there will be differing categories available with differential costs (including no cost for Associate Members who have an interest
in keeping up-to-date with the work of the Collaborative but are not actively engaged in research).
4. Executive Board Membership
It was agreed to invite BACME (British Association for CFS/ME – a multidisciplinary membership organisation for clinicians) to join as an Observing member of the Executive Board. This would ensure that a direct link with clinicians and the work of BACME is maintained. Further benefits include supporting the participation of people with M.E. in research projects, disseminating outcomes from research and enhancing the potential for further collaboration.
5. Future Collaborative activities
a) Research priorities/fundraising
The charities have put forward their list of priorities. SH will amalgamate these together into four categories with some cross-cutting themes for consideration and include the Medical Research Council (MRC) highlight notice priorities.
Researchers will produce summary statements about each of the priorities to highlight the importance and relevance of each priority. Charities will then consider these against their organisational ones and identify any potential where they might work with others. It was made clear that this does not affect a charity’s independence or require them to work to the Collaborative identified priorities.
b) Industry involvement
There are now at least three organisations interested in opening a dialogue with the Collaborative. We will consider how best to progress with a view to having a representative/s to attend part of the October meeting to explore how we might work together. All members have been asked to identify additional names/organisations they have contact with that would be interested in further dialogue.
c) International connections
The recent success of the Biobank team based at the London School of Hygiene and Tropical Medicine (funded by Action for M.E., ME Association and ME Research UK) in securing £1.5m NIH funding from the US was welcomed. It also highlights how collaboration can lead to leveraging resources internationally. Members will consider what links could be made internationally and pass ideas to SH for he and EC to pursue.
6. Relationships with other initiatives
SH attended the last Forward M.E. meeting which is led by the Countess of Mar and had lunch with the Countess before the meeting. The detail of SH’s presentation will be available soon in the Forward M.E. minutes. It was a positive meeting and provided the opportunity to hear thoughts, concerns and ideas from other M.E. charities. SH has been invited to present again in the future on progress made.
Annette Brooke MP has agreed to join the Executive Board as an observer and SH will meet with the All Party Parliamentary Group in due course.
There is also a need for wider public/patient community engagement and this will be considered with a view to offering an interface with the research community.
7. Annual conference
It was agreed to hold annual conferences and a sub-committee will be established with people nominating themselves for involvement to SH within the next week. JM will coordinate the first meeting as the MRC have committed to support this initiative and link it with an agreed forum for researchers funded through the MRC.
8. Future meeting dates
SC has booked dates for the next 18 months and these will be held at the MRC. The next meeting is on Monday 7 October 2013.