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.
A bit nervous about this given you have to support the NICE guidelines/similar to be a member of BACME.
There were already clinicians from the NHS on the executive board so unsure if this was necessary.
Anyway, who knows, perhaps I have been looking too much on the negative and it could be beneficial.
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.
Discussing areas of concern, I think you missed something, Dolphin:
"EC has yet to invite an early career researcher to the Executive Board"
I might have misunderstood this, but if it is EC's responsibility to decide who is invited, I'm not very optimistic about this. I can't imagine her inviting an early-career researcher involved in cutting-edge biomedical research.
We've no idea how this project is going to pan out. It could be disastrous, but it could be transformational. I guess we'll find out in a couple of years or so.
I'm increasingly doubtful that any good will come of this. I doubt that much good will come from any CFS 'collaborations' when so many of those who have built their careers on CFS are quacks. So long as they're allowed to go on clinging to authority and money, things will only be able to progress very slowly.
Minutes from the CMRC September 24th meeting can be downloaded here.
This includes a report on the conference, as well as plans to evaluate the conference:
· Evaluation: we need to be clear what impact the conference has had e.g. What new collaborations and/or grants have resulted from relationships and ideas from the conference. Agreed SC to undertake survey with research attendees in 6 months.
· SH outlined his thoughts that he has shared at various patient meetings and the conference regarding the need for a systemic approach to be taken to enhance and catalyse more and better research in a coordinated, strategic way.
This will require a top-down approach (complementing the bottom-up approach being taken with researchers and PPI).
It will be a five year follow up to the workshop held previously which led to the MRC funding. It will need to consider delivery on a national scale and utilising new technology and the ‘omics’.
· All agreed that this would be a productive activity and should lead to more funding and ultimately more high quality research.
· Agreed that the Board will write to a number of key stakeholders, including those outside the field, to invite input to a workshop held early next calendar year. Will require work to identify funding for this.
More about this approach in Stephen Holgate's talk to patients (video, plus slide show for a faster version). IT has the potential to move things onto a much bigger scale, and I hope it gets somewhere.
b) Future Collaborations
· Invite other illness groups to present on how they have moved similar collaborations forward to inform future activity. Ideas to SC and contacts will be made by the CMRC as a whole. This would contribute to sustainability.
· Need to identify a mechanism for assessing the health, social and economic burden of the illness to help raise profile and engage those outside the field.