United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

Yes, I guess it's a sort of a front for her advocacy work. She has used the term 'Alliance' in various forms to put on events etc in the past.

 

With Sir Stephen Holgate stepping down as Chair of the CMRC, things at the CMRC have been a little uncertain as of late. The CMRC also recently lost its secretariat, which was Action For ME. AfME, and particular Sonya, has become very overstretched over the last two years, with key roles in DecodeME and the Priority Setting Partnership.

There was a proposal for the CMRC to be folded into ForwardME. The CMRC Patient Advisory Group (PAG), in particular, was concerned that this proposal would mean the relegation of the main body promoting biomedical research for ME/CFS in the UK, and felt that the CMRC should retain its independence and sole aim of increasing biomedical research funding and collaboration, while the PAG would potentially join ForwardME as a member.

Within the PAG, Opal was instrumental in securing Dr David Strain as the new CMRC chair, in essense securing the future of the CMRC in the short term. However, the CMRC still needs to find a secretariat or a suitable alternative to provide some funding and organisational duties.

 

That's the Steering Group you're looking at, not members. The ForwardME members are generally (representatives of) the numerous different charities, and then some individuals.

There CMRC members are generally individual researchers, like Chris Ponting (who is Deputy Chair).

I presume Stephen Holgate is still on the FME Steering Group.

Edit: There is, of course, overlap between the FME SG/members, and the CMRC members/board

 

SH is listed on the Members Page https://forward-me.co.uk/our-members/
This has a title of Members and Professionals.

It also lists him as chair of CMRC in this bio, so not very clear what his involvement is.

 

That's outdated info, but I suspect even thought he has stood down as CMRC Chair, he will remain on FME Steering Group, though I notice he hasn't been at most of the recent meetings (probably too busy).

 

So if PAG are going to remain "attached" to CMRC will you still be involved with Forward ME or not?

 

We're not sure yet; it's largely down to Andrew, the new ForwardME Chair.

 

I just came across reference to this book/booklet again. It still has a very low profile at least on Twitter with this being the only link to it.

The second tweet has an image with a table of contents.

 

Merged thread

UK ME Research Collaborative (MERC) - Applications invited for Patient Advisory Group until end of Feb 2023

https://meassociation.org.uk/2022/1...tions-invited-for-merc-patient-advisory-group

 

Adrian, I know you're really busy, but the MEA page for MERC and PAG desperately needs updating (https://meassociation.org.uk/research/cfsme-research-collaborative/). Perhaps now is a good time if this ad is to be posted, otherwise it gives inaccurate information about MERC and PAG. I think Russell Fleming does the MEA website, so I wonder if you could bring this up with him....

 

MEA advert for PAG applications now online: https://meassociation.org.uk/2022/12/applications-invited-for-merc-patient-advisory-group/

 

The real issue with PAG is the amount of admin work involved. That sort of work is not easy when you have ME.

Unfortunately the secretariat support, once provided/funded by AfME and MEA, was withdrawn. I still don't understand why they won't provide some further support. A related issue is that MERC itself has undergone a quite turbulent time over recent years, and is essentially on pause now that the UK ME Delivery Plan is underway.