UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013

UK CFS/M.E. Research Collaborative Executive Board
Summary of Discussion 7th October 2013

Present:
Dr. Esther Crawley (EC), Bristol University – Vice Chair (Chair of meeting)
Sonya Chowdhury (SC), Action for M.E. – Secretariat
Dr. Charles Shepherd (CS), M.E. Association
Mary-Jane Willow (MJW), 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
Jen McKendrick (JM), ME Research UK
Professor Paul Moss (PM), Birmingham University

Observers Present:
Joe McNamara (JM), Medical Research Council
Neeha Isaar-Brown (NIB), Medical Research Council

Apologies:
Professor Stephen Holgate (SH), Southampton University
Clive Kerfoot (CK), CFS Research Foundation
Ed Sykes (ES), Science Media Centre
Peter Muir (PM), CFS Research Foundation
Dr. Neil Abbott (NA)
Professor Julia Newton (JN), Newcastle University
Zoe Gotts (ZG), Northumbria University

1. Welcome & Introductions

EC opened the meeting and gave apologies from SH who contacted the Board this morning to say that he was unwell. EC informed the Board that ZG has accepted the invite as an early career researcher although was unable to attend this meeting.

2. Research Priorities

All five charities have submitted their priorities which included the top five priorities identified by nearly 1,000 participants to Action for M.E.’s survey, where 90% of the respondents had M.E. During a conference call over the summer with a subgroup of the Board, it was agreed that SH will work to pull these priorities together to inform the Collaborative’s work.

There was a strong need identified for work with, and including, people with severe M.E. as research with this patient group is lacking. Action for M.E. is in the process of replicating the survey with researchers as part of their consultation to inform their Research Strategy and will report back results to the Board.

It was agreed to look at other organisations such as the MS Society where there has been effective collaborations between patients and researchers in driving research work forward. There was a lot of discussion about how the Board might take this forward.

3. Membership of the Collaborative

Applications for membership were considered in accordance with the criteria for the relevant type of membership. It was agreed that if there was a query regarding meeting the criteria, the applicant would be asked to provide further information to support their application. A separate bank account has been set up. The Board also discussed its commitment to having a Patient Advisory Group or equivalent to enhance more collaborative working between patients and researchers.

4. Annual Science Conference

There is a small conference planning group that has been formed and a venue in Bristol has been booked for 1-2nd September 2014. The purpose is to explore how to drive and generate more research and to work more collaboratively. Ideas were shared for the focus of thematic workshops on such as genomics, diagnosis, treatment, cognitive dysfunction and biobanking.

There will be a patient/researcher joint session focused on how researchers and patients can work more effectively together. It was agreed to identify leading researchers in and outside of the field to invite and engage with the event including international experts.

Costs will be covered by attendees with a financial contribution from MRC. There may be additional costs, such as fees such as supporting patient participation that the charities could consider but this would need to be looked at in more detail.

Further consideration will be given to live streaming.

5. Press and Media

SC agreed to liaise with ES to organise a meeting for the SMC with the charities.

6. Next Meeting

19th December 2013.