UK CMRC 2018 Conference held September 19 & 20 at Bristol

https://twitter.com/user/status/1042369208640839681

 

https://twitter.com/user/status/1042368566140588034

 

Hi Binkie - you don't have to have a Twitter account (I don't) to see the tweets.

 

Yes, Thank you @Sasha

I got them on the link you provided. That’s where I saw Nina Muirhead had proposed a postgrad cert in ME/cfs.

 

https://twitter.com/user/status/1042377193614176256


.....not only drug trials !!

 

Yes, the point I was trying to make, thank you Nellie - not my best day today so thinking a bit hard at the moment.

 

All the talks so far sound very interesting, based on the tweets.

 

@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?



@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.

 

The tweets are starting up again...

 

https://twitter.com/user/status/1042415332252635136



would love to know what he makes of Trudie Chalders 'research' as they are both at KCL

 

What a weird idea
https://twitter.com/user/status/1042424989427879937

 

https://twitter.com/user/status/1042428916206587904

 

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

 

Very interesting. Neurocognitive problems would be brainfog and related symptoms. Neuroendocrine would be hormonal and neurotransmitter-related.

 

Anybody know how neuroendo stuff would manifest?

 

interesting exchange on this thread:
https://twitter.com/user/status/1042379110553735168

https://twitter.com/user/status/1042388789514121223

https://twitter.com/user/status/1042407375762870272

 

ooh ooh
https://twitter.com/user/status/1042456284849745921

https://twitter.com/user/status/1042457721377837056

 

Great that David spoke up on this mRC funded and supported study part forming the basis of nhs care

 

https://twitter.com/user/status/1042458699170807809