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

[Andy]

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

 

[Sly Saint]

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).

 

[Andy]

SH introduced the paper that has been produced as a vision for the field for the February meeting which has been submitted with letters of support including NIH, CIHR and the PAG. This has been a very collaborative process - engaging a wide number of individuals/organisations and the PAG has been central to this. NIB outlined the potential outcomes from the submission and potential timescales. She also highlighted the level of confidence that the amount of collaboration achieved should instil.

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

 

[Trish]

In the minutes and matters arising section:

IAFME (International Alliance for ME) Consensus Document: SC reported that the consensus document has been submitted and updated on progress. The Alliance has now been formally constituted and there are 12 members. The strategic plan is being finalised. SH requested that updates are added as a standing agenda item for future meeting.

I don't understand what relevance IAFME has to the CMRC. This sounds like more of AfME's empire building.

Working groups -
Medical education - Nina Muirhead leading - building contacts with medical schools.
Omics and big data ''has fed into the submission to the MRC''. Colin Smith is leading this group. 
Mitochondrial biology Karl Morten and Jo Elson are jointly leading the group.
Immunology: Carmine Pariante agreed to establish the first group meeting where a lead will be identified.
Imaging - new group led by Neil Harrison

 

[NelliePledge]

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

As @phil_in_bristol was at the meeting maybe he could say something about what this means?

 

[Jonathan Edwards]

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.

 

[Andy]

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

She also highlighted the level of confidence that the amount of collaboration achieved should instil.

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

 

[Jonathan Edwards]

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.

 

[Andy]

I don't understand what relevance IAFME has to the CMRC. This sounds like more of AfME's empire building.

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.

 

[phil_scottish_borders]

As @phil_in_bristol was at the meeting maybe he could say something about what this means?

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!

 

[Hoopoe]

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

 

[phil_scottish_borders]

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.

 

[Jonathan Edwards]

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

What @phil_in_bristol said.

 

[Sly Saint]

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

 

[Andy]

 PR: GM [Gabrielle Murphy] agreed to take the lead with this group alongside the PAG.

What can possibly go wrong??

CMRC Working Groups 

• Medical Education Group: NM gave an update from the first meeting of the new group, approved terms of reference and requested that the other groups feed in areas where medical education would be beneficial. 
• Priority setting partnership: SB detailed that SC had a call with the James Lind Alliance. Further details to be sent round to the board. 
• Omics and Big Data. CSm is leading this group and gave an update on the membership and discussions they have been having. 
• Mitochondrial biology: JE has arranged a meeting with Karl Morten to continue discussions around this group and move forward. 
• Immunology: CPa was unable to join the meeting for this part of the discussion. 
• Imaging. NH has been co-opted to lead this group and the scope was discussed. 
• PR: GM agreed to take the lead with this group alongside the PAG.

SB to send round ToR example for each group to adapt. Also board members were reminded to put themselves forward to groups.

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

 

[Esther12]

What can possibly go wrong??

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

Medical Education Group: NM gave an update from the first meeting of the new group, approved terms of reference and requested that the other groups feed in areas where medical education would be beneficial

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.

 

[chrisb]

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

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

 

[Esther12]

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.

 

[Cinders66]

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

 

[rvallee]

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.