CMRC minutes November 2018

Merged thread.


Source: Action for ME

Date: December 4, 2018

URL:
https://www.actionforme.org.uk/news/cmrc-board-meeting-latest-update/

Ref: https://www.actionforme.org.uk/research/uk-cfsme-collaborative/

CMRC Board meeting: latest update
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Minutes from last month's meeting of the Board of the UK CFS/M.E. Collaborative (CMRC) are now available to read on our CMRC page, giving updates on:

* the CMRC's priority-setting partnership with the James Lind Alliance

* recruitment to the Patient Advisory Group, which ensures that the views and experiences of patients are central to the CMRC decision-making process

* the International Alliance for M.E. consensus document, which was shared with the World Health Organisation this morning

* the CMRC's presentation to the Medical Research Council's Population and Systems Medicine Board earlier this year

* the CMRC's fifth annual science conference, which took place in September.

A full report of the conference, with overviews of presentations and links to recordings on our YouTube channel, will be published in the next few days. Delegates at the conference had the opportunity to attend one of three workshops, one of which focused on biomedical research priorities. As a result, the CMRC is establishing four working groups to develop strategies and implement action plans on -omics and big data, medical education, mitochondrial biology and immunology.

https://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg

The Board of the CMRC will next meet in January.

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(c) 2018 AfME

 

Unfortunately, there seems to be no way now to do targeted Facebook ads for people with an interest in ME or CFS. My contact no longer wants me to do untargeted ads just aimed at people in an area if it only relates to ME or CFS. So I can only use the ads when they want healthy controls or healthy controls and people with ME or CFS. Also it takes some time to set up these ads and we have a limited budget so I don’t get to highlight all requests. So I wish more people would promote recruitment requests.

 

So what happened to the working groups that were set up in 2012 ?

 

Which Mark Edwards is that? The neurologist who is interested in functional movement disorders or the other one?

 

Pretty sure it's the other one.

 

From 2013

https://www.meassociation.org.uk/20...ess-think-piece-by-simon-mcgrath-4-june-2013/

“Getting down to work: Funding and more

The Collaborative is setting up four ‘Workstreams’ to get things done. Little was said about three of them – Publicity & Awareness, Increasing Capacity, and Organisation (presumably more will emerge on this in future) but there were some significant developments regarding funding priorities.

Funding priorities: severely-affected and sub-grouping

The Collaborative wants to stimulate more funding for research and support a strategic approach for future funding. Stephen Holgate has said that fundraising will be a priority. It’s quite possible that the UK Research Collaborative – backed by almost all the ME charities and all the main researchers – could pull in new and wealthy donors. Parkinson’s research was revolutionised by a donation of £5 million – wouldn’t it be nice if something like that came out of this initiative? (I do like to dream).

The MRC has already identified four priority areas including immune dysfunction and neuropathology, but the Collaborative has now also prioritised severely-affected patients and epidemiology (including sub grouping/phenotyping). Great to see the severely-affected (and severely-neglected) getting attention in research. The Board even discussed having ‘severely affected’ as a separate workstream, but it was better as a research priority to ensure that activity was cross-cutting and that the focus is on increasing funding to enable more research into this area.”

NB. AFAIC Nothings been done for the severe

 

What I quoted was from a blog written on the 2013 CMRC launch when there was supposedly work streams and priorities. As new ones are launched I was highlighting that the old ones didn’t get us far.

The Biobank including pwSME in a general ME project is good but isn’t anywhere near enough for something so complex And disabling. Severe ME, like advanced forms of other disease, might develop issues of its own eg cognitive issues are reported often as very distressing in severe ME yet many with mild to moderate can still function reasonably ok in that areas and the complaints are more physical. The CMRC hardly discussed severe ME at conference for the first 2-3 years.