Thread for all minutes of the UK CFS/ME Research Collaborative [CMRC] Executive Board Meetings

Minutes of meeting January 2019.

Agenda

• Minutes and Matters Arising
• MRC Strategy Board
• CMRC Working Groups
• CMRC Membership
• AOB

https://www.actionforme.org.uk/uploads/images/2019/01/CMRC_minutes_1.pdf

 

There seem to be two Charles Shepherds?

Charles Shepherd(CS) Charles Shepherd (C)

I didn't realise Gabrielle Murphy is also on the CMRC (although she didn't attend this meeting).

 

Is this something I missed/I've forgotten? Any clues anyone?

 

The CMRC has put together a proposal for MRC in response to an invitation to do so following initial approaches. The proposal that has just gone in is still a first stage application as I understand it.

This was not trumped in the way that MEGA was and I would probably not have known about it had I not been asked to advise, along with two US investigators.

At an early stage I thought any further move needed to include the relevant groups with expertise in order not to duplicate, as happened last spring with Wellcome. My impression is that the relevant groups have been included and although I have not seen the application I have seen an outline that looked to me sensible.

 

Thanks for the reply. With my patient head on I was reading collaboration as being with patient groups, I guess though that it is with research groups?

And

is then about the level of confidence that this application will be acceptable to funding bodies?

 

I guess so. It seems a good plan to present a project that includes all the most relevant people. There is a credible claim that this is the best package UK science departments can put together for ME and ME needs funding. That is a lot better than any hint that this is one group trying to corner the market.

 

I asked this question "Does this mean merely that the CMRC are interested enough in efforts of the IAFME to want constant updates on their progress or is there an intention for the CMRC to become a member of the IAFME? Or something other than those two options?" directly and Sonya has responded "In response to your question, there is no intention that I’m aware of for the CMRC to join the IAFME but members were keen to hear updates from me at each meeting, as and when there are any." - I had her permission to share her response.

 

See Jonathan E's replies - pretty much covers it. It's a proposal to the MRC which hopefully can lead to large scale funding (which we all need so badly, as JE states) towards the CMRC's goal of thoroughly researching the biology of ME/CFS.

Andy - there were other supportive letters for the bid, as stated in the minutes, but the only actual patient group that contributed was us, the PAG to the CMRC, as far as I know. Hope that helps!

 

Does "relevant people" include BPS researchers or not? I hope not.

 

Absolutely not! the CMRC is not interested in any BPS approaches whatsoever (I'm glad to report!). We want proper science.

 

What @phil_in_bristol said.

 

minutes from CMRC meeting April 2019
https://www.actionforme.org.uk/uploads/images/2019/04/CMRC_minutes_10.4.19.pdf

 

What can possibly go wrong??

Hopefully this is evidence of them actually getting properly organised although, yes, this is the sort of thing that should have been done years ago

 

Also, who is NM? Is it possible that refers to GM too?

The primary thing we need to do with PR and medical education is make it clear that people like GM are not trustworthy. I'm not sure GM is the right person to lead on that.

 

I presumed that it was Nina Muirhead but, on checking, she does not seem to be recorded as having been there.

 

I had the same thought, but there have been typos in older minutes where the wrong initial was put in, and I could see no 'NM' there.

 

2008 -2011 MRC and ME expert groups debated priorities
2013 workstreams were set up in new CMRC to discuss priorities, severe ME was identified....
2017 patients priorities decided as important
2018 SC looked into priorities setting organisation and workshops on areas were considered good idea after 5 years spent soley on area of genomics
2019 SC has phone call with priorities setting organisation and the focus of the workshops is discussed

Gotta say this is all progressing at lightning speed

 

Which will come first: heat death of the universe vs. competent work from the MRC related to ME?

The only question is about proton degeneracy, whether it takes trillion or quadrillion years, or more. Tough race. A true quantum finish.