UK CMRC 2018 Conference held September 19 & 20 at Bristol

@actionforme: Prof Holgate: "We will be working with @LindAlliance to consult with #pwME #carers, professionals and clinicians to do a piece of work on #research prioritisation." This will begin soon #CMRC2018

This was mentioned a year ago, memories of the years they spent on "priorities" before the 2011 funds came back to mimd

1h
Dr Muirhead:
@ukmedschools
have given me the green light to survey all the medical schools in the UK about how they teach students about #MECFS and #pwME. "I want to know details: what are they being taught, who is teaching it, what else they'd be willing to include."
#CMRC2018

And no ones done this to date? :banghead:



@actionforme: Finishing up, Dr Hunter highlights that more work is required to quantify cost of informal care for #pwME, and impact on quality of life too. Final comment from Prof Holgate: "The indirect costs will help us show why this illness must be taken seriously."
#MECFS
#CMRC2018

We have known for years that ME has great economic burden, we don’t need more info to make the case.
 
I’ve just looked through the MRC Twitter. I don’t think the contribution they’re making to ME science or the conference is enough either resource wise or effort wise. I just saw:

“Neurosciences and brain tumour research: joining forces for greater impact - About us - Medical Research Council”

https://mrc.ukri.org/about/events/n...r-research-joining-forces-for-greater-impact/

Which looks really good. I don’t think our science stuff looks equally high end professional or supported. I also saw many research calls with MRC funding put up for mental health, diet and health in Peru, hypertension and diabetes as part of some global effort and for a group of immune diseases with an acronym I forget. Then they say to us we can’t do it for you. I don’t need more time wasted on a project seeking patients priorities I need this field to be taken appropriately seriously, supported and intensely stimulated. The only recent thing about CFS on their page was the PACE letter, no promo of this CMRC conference, It’s a Token effort from an organization that probably is full of people like Fiona watt and Colin blakemore.

This report on the recent brain tumor movement, debate and response is interesting too, because it’s groups , including MRC seriously discussing why that field wasn’t progressing and what needs to change and trying to push through lots of change to make the field work , including I believe extra funding. This could be done for ME too but isn’t.

https://assets.publishing.service.g...ch_-_task_and_finish_working_group_report.pdf
 
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