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

I think Chris Ponting is doing a great job trying to get some useful research going. Credit to him and Nina Muirhead for actually doing stuff. Countess of Mar for getting involved as well. Trying to work on influencing MRC from within.

Unfortunately with those who are hangovers like Murphy and Pariente the complete lack of impetus from AFME and Holgate these people stuck in status quo mode are a drag on progress. Clearly from the minutes nothing is actually being achieved other than Chris Pontings proposals and Nina Muirhead medical education work. Pariente is supposed to be leading a work stream on immunology and has reported precisely nothing in terms of activity this year. Similarly zero progress on “strategy”.
 
Andy said:
Minutes of UK CFS/Medical Education Group: SB updated on the work NM has been engaging with health professionals from different fields and assisting SB withthe preparation for RCGP conference. GM gave an update on producing learning modules.Research Collaborative Executive Board Meeting 16 October 2019
  • MRC progress
  • CMRC Working Groups
  • Conference
  • Cochrane
  • International updates
https://www.actionforme.org.uk/uploads/images/2019/11/CMRC_minutes_16.10.19_.pdf
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Medical Education Group: SB updated on the work NM has been engaging with health professionals from different fields and assisting SB withthe preparation for RCGP conference. GM gave an update on producing learning modules.
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Gabrielle Murphy's involvement with learning modules sounds terrible.
 
I dislike the short hand Of the minutes and lack of who’s who for patients.
The genome study seems very behind the scenes and we are Waiting on news of submission?
I think the progress of the groups is poor to say the least.
Medical Education Group: SB updated on the work NM has been engaging with health professionals from different fields and assisting SB with the preparation for RCGP conference. GM gave an update on producing learning modules. DB looking to coordinate activity with NM to assist. Physios 4 ME were invited to join the group.
 Priority setting partnership: SC updated on the work with the PSP. Looked to get agreement to explore more closely as it is a large piece of work.
 Omics and Big Data. Meeting held earlier in the month. CPS spoke on Patients Know Best. It allows you to communicate directly to physicians and access help online.
 Mitochondrial biology: JE was unable to attend the meeting
 Immunology: CP wishes to step down as leader of this group due
to work commitments and we will be looking for a new chair.
 PR: OWP talked about her paper and the PR working group.
Meeting held in September to discuss driving group forward and being more inclusive.
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MRC at some point will make the community aware there will be a project proposal submission.
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Planning to eventually plan for planning. One day. Decade unsure.

SC introduced Karla Soares-Weiser to the meeting from Cochrane. She gave an update on the Cochrane review and said she is aware of controversies around this. Acknowledges they need patients at the outset of any full review.
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Does that awareness of "controversies" cover the fact that it is the people who have sabotaged this disease who are themselves the main point of controversy, that it is their very involvement that causes most of the problems and impairs progress? Remains to be seen. Evidence so far from the latest turd polish suggests otherwise. How do we find out the substance of that update?

The MRC keeps pretending ME is a priority. The CMRC appears to slouch in no particular direction so far. This is not consistent with a priority, pretty much the opposite, which is consistent with there being exactly zero progress and much regress. Priorities are not defined by words but by funding and effort. As is typical, there is a very large difference between objective outcomes and the subjective ones prefered by some.
 
Cinders66 said:
Kings have a new research project, something to do with the arts as useful for illness, dance song etc I think that pariante is head of that. Not that he was either useful or Especially interested in CFS I don’t think.
https://www.kcl.ac.uk/news/worlds-largest-study-into-impact-of-arts-on-physical-and-mental-health
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Well, no loss then. Of all the nonsense it's the super-condescending nonsense that treats us as stupid children that disgusts me the most.

Not really sure what he was doing there anyway. Good riddance.
 
Andy said:
I can't say any more at the moment but updates on both will appear soon.
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thankyou.
are you in the pag or has someone from the CMRC or insider charity told you that? It has been kind of intimated for a while that we are waiting on something, on social media it feel charities are just killing time “let’s talk about fireworks”: let’s talk about pacing , again” because there’s no other real news yet.

To be honest as I’ve said before I personally am not putting any hope in the CMRC nor am I waiting with especial interest on the gwas, I’m more just mildly interested in how Long they Are stringing us along with essentially nothing solid with little pretence even of the CMRC being an effective, well organised, enthused, research org, obviously the gwas study is being held up as a tantalizing prize for our long wait.but if it’s just a submission surely there’s no guarantee of funds, or it becomes a deal?

Holgate has had a year to explore the company option to “set priorities” when he could just ask the mea or whoever have done the recent surveys to do a patient input thing, if they’re really interEstéd. Some of us were groaning at length of the 2008-11 priority setting of the ME expert group or remember at CMRC launch the focus on priorities then, with workstreams mentioned, severe ME was one apparently.

To me, the minutes with no guide as to who people are, short hand names published etc are not intended to be particularly patient friendly , perhaps the mrc and charities are holding the workshop mentioned today ...who knows.

I’m aware any negativity around the uk situation is sometimes not appreciated so I’ve kept my comment short but am just speaking as freely as others do about other initiatives and in the same type of exasperation that Some others feel eg around the alleged failings of nih for our community.
 
A small point to clarify in the latest minutes, if you are wondering who Anita Lim is, and what her role is within the ME world, I can confirm she's my wife and happened to accompany me up to London - other than having the misfortune to be married to me she's not involved in anything to do with ME.

I was attending a GWAS meeting later in the day which was very close to where the CMRC meeting was happening, so took the opportunity to go along and observe, Anita should have been down as an observer as well.
 
From the minutes.

Agenda Items

Welcome & Introductions

1 Minutes and Matters Arising

2 Mainstream Research Funding
2.1 Biomed Application [see UK Genome Wide Association Study (GWAS) project - draft website goes live and feedback sought on recruitment plan discussion thread]
2.3 Future Research

3 CMRC Working Groups
3.1 Medical Education Group [see The Cambridge Lectures: Demystifying ME/CFS, Cambridge, 19th March 2020 for discussion thread of one example of these efforts]
3.2 Omics and Big Data
3.3 Mitochondrial biology
3.4 Priority setting partnership (PSP) [see UK: Priority Setting Partnership for ME/CFS for discussion thread]
3.5 PR

4 Conference [see UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020 for discussion thread]

7 AOB
 
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