ME/CFS Research Collaborative Executive Board | summary of discussion | 7 October 2013

Present:

Professor Stephen Holgate (SH), Southampton University – Chair
Dr. Esther Crawley (EC), Bristol University – Vice Chair
Sonya Chowdhury (SC), Action for M.E. – Secretariat (via phone)
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 Hugh Perry (HP), Southampton University
Jan McKendrick (JM), ME Research UK
Zoe Gotts (ZG), Northumbria University

Observers Present:

Neeha Isaar-Brown (NIB), Medical Research Council

Apologies:

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
Professor Paul Little (PL), Southampton University
Professor Paul Moss (PM), Birmingham University
Joe McNamara (JM), Medical Research Council

1. Welcome & Introductions

SH opened the meeting and gave apologies. SC joined via telephone as she was unable to attend in person.

2. Membership

New membership applications were approved. Further recruitment will be undertaken in the new year.

3. Annual Science Conference

The planning is progressing with some speakers confirmed and awaiting a response from others. Once these have been received, a programme will be established. The speaker list includes international speakers.

The patient session will be facilitated with external input and will involve researchers, including speakers, to enable opportunities for meaningful discussion and development.

Invites to the conference will be going out early next year and will include targeting invites from SH to local M.E. groups as well as researchers. The Board explored a number of ideas in relation to themes and issues to be covered and addressed during the conference. It was agreed that the planning group will now progress this.

There will be live blogging from the conference and the Board agreed to explore the potential for enhancing accessibility to the conference through a range of communications channels. Further work will be needed on this given the resource implications.

4. Patient Involvement

SC has been contacted on a number of occasions regarding the development of patient reported outcome measures, specifically, in
relation to the engagement of patients. The Board discussed how to stimulate research interest in this and funding for it. Board members agreed to explore how to highlight within their universities as a project for a PhD student and also to approach other researchers to request their support with this. Agreed we could also consider inclusion of a junior researcher session at the conference to highlight.

5. Workstreams

Suggested workstreams were previously circulated and work has been progressing in some areas. SH highlighted that the Collaborative is not a charity and does not have funding. It may be helpful to think about what we can learn from the Respiratory Collaborative.

A collaborative can bring people together to bring down the barriers that have prevented the field progressing. We should be finding ways to bring people together so that they can identify ways to work together, write it up and apply for grants. Creating workshops should be around the themes identified.

SH suggested the Collaborative invites MRC-funded researchers and others to the next Board meeting (starting with the March meeting) and discuss with them how to build on research in their area and attract more research and funding. This could be followed up with a workshop with a view to the output of a joint application. We could aim to do 1-2 of these each year. Agreed it would be good to have one prior to the September conference.

6. Communications & Website

It was agreed that each of the charities would have a section/page on their websites outlining the work and progress of the Collaborative. SC fedback that they have initiated this and would be happy to draft something for all to use. Agreed to finalise at the February meeting. SC is still pursuing a meeting with ES and the charities.

7. AOB

Industry involvement was discussed and previous contacts will be followed up alongside invites to the conference.

The Board acknowledged the outstanding contribution that Anne Faulkner has made, not just to the CFS/ME community but to many others through her commitment and passion to addressing inequalities. SH has made contact with the CFS Research Foundation to propose that a lecture at the conference is dedicated to Anne in honour of her work.

Next meeting: 20th March 2014.

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