Minutes of CMRC Meeting 7 May 2015

Present: Stephen Holgate (SH) Sonya Chowdhury (SC) Ed Sykes (ES) Charles Shepherd (CS) Jan McKendrick (JM) Hugh Perry (HP) Mary Jane Willow (MJW) Neha Issar-Brown (NIB)

Joined via teleconference: Zoe Gotts (ZG) Julia Newton (JN) Esther Crawley (EC)

Apologies: Annette Brooke (AB) Joe McNamara (JMC) Alastair Miller (AM) Paul Little (PL)

Agenda Item Action

1 SH opened the meeting.

No additional conflicts of interest were recorded.

2 Minutes of the last meeting held 17 December were approved.

All actions have been completed or are addressed in the agenda with the exception of the following:

 SH has written to funders with some success. SH has approached a number of other organisations and one will be inputting into the conference and become members. SH has written to Wellcome Trust but has not had a response as yet. HP will make a personal approach. There SH/HP needs to be further approaches to other mainstream funders as there remains a lack in involvement. CS fedback from contact that Forward M.E. has had with Dan Poulter – he had agreed to meet with group and CS suggested that a discussion could be held with him at that point. SH will liaise with PL re NIHR and who else to approach.  Screening Panel to support researchers: ZG has prepared the documentation. It was agreed to establish a Panel to assist enhance the SH/HP/EC/PL quality of grant applications. SH and HP will lead this with EC; will also approach PL.

3. Conference

SC introduced the update report she had written. All plenary chairs, keynote speaker (Prof Jose Montoya) and lead speakers have been confirmed. Additional speakers will be identified following peer review of abstracts. SC/JN are visiting the venue next week. It was agreed that all members of the Board will email SC to know what they are doing to market the conference so that a marketing plan All can be developed for future years.

The MRC have confirmed a contribution to the conference but final amount to SC/NIB be confirmed. SC/NIB will be discussing this in due course. CS reported that the

CMRC Meeting 24.9.14 Minutes 1 MEA will provide a contribution of £500 to include covering Jo Nijs attendance given that they are funding a research project with him. There are further discussions planned with another illness charity who have confirmed that they will make a contribution and input to the conference itself given overlaps with SC their work.

Three abstract forms have already been submitted. HP will lead the peer review HP of abstracts with SH or EC. There were abstracts that were not accepted last year and where this was the case, a third reviewer will be identified. It was agreed that the same process would be followed this year. The review will ensure that data presented will advance the scientific field.

It was previously discussed that there will be a session on Tuesday lunchtime on press engagement for researchers. ES will lead this session with a focus on research reporting in the press looking at how information can be reported ES accurately but can also be distorted and how to prevent this.

CS fedback from the Biobank Steering Group meeting yesterday that he and SC were at. The conference would be an opportunity to promote the launch of the Biobank for researchers. It was agreed that a poster should be submitted and peer reviewed. However, given its potential benefit to researchers, the poster would be displayed at the registration desk to ensure a good profile. CS to liaise CS with the research team to feedback.

Kirstie Heywood will facilitate the joint associate member and researcher workshop. This session will be designed with input from researchers and Action SC/EC for M.E.’s patient reference group. SC/EC to progress.

A communications strategy will be developed to maximise coverage of the conference and to consider press conferences. It will be essential to agree what SC/ES the comms hook will be for any press conference.

MJW fedback that the BACME conference has been set for October 2016. There are some obvious synergies in relation to translating research into practice and SC/EC members discussed the potential for an overlap with the two conferences whereby one day would be a shared conference. It was agreed that two reps (SC/EC) will consider this with BACME reps for 2017 for an event in London. A decision will be taken by the Board in due course.

4 Membership of the Board

Paul Moss has had to resign due to workload and other commitments as has Peter White. There have been previous discussions regarding new members of the Board and some researchers suggested. Ideally, it would be good to have a genomics person on the Board alongside an MRC-funded researcher.

The Executive considered proposals on individuals to approach and identified SH three people that it was agreed SH will approach with a view to them being considered by the Executive as potential new Board Members. 5 Grand Challenge

SH outlined previous discussions regarding the idea of a Grand Challenge which would significantly embed research in this field. SH would be willing to commit some funding to this but there will need to be greater investment if this is really going to be achieved. SH challenged members of the group to consider their role and how to take this forward.

NIB reported that she has discussed with SC the potential to undertake a portfolio analysis to establish who is working in the area and related fields. This NIB/SC is a significant gap and would benefit from use of a platform such as UBER Research which has been used previously in epigenetics globally vs UK vs MRC. NIB stated that the MRC would be willing to coordinate this.

HP added there is likely to be a higher proportion of observational studies that are taking place but the need is for experimental medicine trials as this is significantly lacking in this field. This analysis would prove helpful in really highlighting the gaps and inform work of the CMRC to address this with mainstream funders and to better understand the biology behind symptoms to inform interventions.

It was agreed that a workshop would be established to kick-start this followed by a series of further workshops with UK researchers before bringing together the different strands. The key focus would be - intervention, experimental medicine and outcomes. The IOM report that was released is watershed in the US and this can be used to help drive this Challenge forward. SH will write to each of the SH Boards to ask them to commit finances to enable this to happen.

A plan and case for support will need to be pulled together within the next month which will include the portfolio analysis as part of the Grand Challenge. SC/NIB SH referenced the seed grants from Wellcome Trust and it was agreed that this should be explored.

6 Patient & Public Involvement

Members reflected on the workshop and the report produced by Sally Crowe, exploring different elements of it (see report for detail). SH acknowledged the quality of output from the workshop. It is a comprehensive analysis of key issues alongside a rich overview of ideas and suggestions.

The Board discussed the importance of effective engagement that creates value i.e. bringing together patients/researchers/clinicians to go through a rigorous process to come up with some shared priorities for research that has been through a to enhance future grant applications. This has been very effective in other areas such as MS working in conjunction with the James Lind Alliance. This will form a third element of the Grand Challenge and any seed funding SH application.

SH and NIB are attending an event with ARUK regarding their work with James Lind Alliance and will explore how to get engaged in the broader agenda and SH/NIB open up the debate. It was agreed that further work would then be undertaken

CMRC Meeting 24.9.14 Minutes 3 to translate the report from the workshop to be translated into action.

7 Working Together Effectively

The Board discussed how to enhance the way in which it works and ensure effective communication. It was highlighted that the charities need to maintain their independence and should be able to question research appropriately.

It was agreed that a Code of Conduct for Communications would be developed and that a Code, agreeable to all Board members, be presented for approval at the next Meeting. It was also agreed that all members be present at the next meeting to discuss and, if appropriate, approve and sign the Code.

This will be made publicly available so that it is clear regarding the relationship between members and the Board. MJW agreed to develop a draft to circulate to MJW the charity members before then going to the rest of the group.

Website: SC and ES are working on setting up a website with up to £1,000 funding from MRC. ES has identified an individual who could help with this; SC ES/SC will progress.

Date of next meeting The next meeting is due to be held on 23 July. However, a number of people are SC not available so SC will circulate some alternative dates.

Post meeting note: next meeting has been confirmed for 7 July 2015

Minutes taken & typed by SC Chair approved: 10.5.15