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UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020
- Thread starter Andy
- Start date
Simon M
Senior Member (Voting Rights)
Lucibee
Senior Member (Voting Rights)
Shame about the lack of live streaming. I wanted to go to it this year. Probably a good thing I didn't get my act together in time though.
Simon M
Senior Member (Voting Rights)
The conference program looks pretty interesting to me. PDF of two day programme attached, and here are my personal highlights:
Day One
9:45 AM a community partnership: the MRC/NIHR application — Chris Ponting reports on the huge GWAS application that includes two patient representatives, including our very own @Andy.
This is followed by a speaker from the NIHR National Biosample centre, which will process and holds the saliva/DNA samples from the GWAS.
10:35 — Alan Moreau on the Canadian collaborative
12:45 — a video section about "understanding post-exertional malaise", part of a Welcome Project Engagement Fund project. (Natalie Boulton & Josh biggs)
Afternoon
Workshop 2: Chris Ponting and Stephen Holgate lead a workshop called "beyond genomics — identifying and supporting the next phase in ME/CFS research". This is presumably focusing on building on the GWAS and 20,000 cohort, perhaps including the development of an expanded biobank (as per the original plan) and Omics work. (I am guessing; I have no inside information)
5 PM: "the crisis of reproducibility in ME/CFS research". I really want to hear this one. It's by Joshua Bibble Chris Ponting's PhD student who I understand is focusing on the need for appropriate use of statistics.
5:15 PM, Cochrane reviews, protocols and plans – again, can't wait for this.
Day two
Plasma metabolomics – a tale of two cohorts – Karl Morten.
10:15 AM is there evidence for T cell clonality a a ME/CFS biomarker? Chris Ponting reporting on the work to try to replicate the amazing initial findings reported by Mark Davis at Stanford of T cell clonal expansion in ME/CFS patients — potentially a smoking gun. Again, I have no idea what this is going to say.
2:15 PM abnormal cerebrovascular reactivity among ME/CFS patients. By Michael VanElzakker, and I'm always interested in what he has to say.
2:45 PM Bhupesh Prusty — I suspect everybody wants to hear what he has to say given the intriguing "something in the blood" findings he has reported.
Conference agenda attached, and here https://www.actionforme.org.uk/uploads/images/2020/03/CMRC_2020_programme_Final.pdf
Day One
9:45 AM a community partnership: the MRC/NIHR application — Chris Ponting reports on the huge GWAS application that includes two patient representatives, including our very own @Andy.
This is followed by a speaker from the NIHR National Biosample centre, which will process and holds the saliva/DNA samples from the GWAS.
10:35 — Alan Moreau on the Canadian collaborative
12:45 — a video section about "understanding post-exertional malaise", part of a Welcome Project Engagement Fund project. (Natalie Boulton & Josh biggs)
Afternoon
Workshop 2: Chris Ponting and Stephen Holgate lead a workshop called "beyond genomics — identifying and supporting the next phase in ME/CFS research". This is presumably focusing on building on the GWAS and 20,000 cohort, perhaps including the development of an expanded biobank (as per the original plan) and Omics work. (I am guessing; I have no inside information)
5 PM: "the crisis of reproducibility in ME/CFS research". I really want to hear this one. It's by Joshua Bibble Chris Ponting's PhD student who I understand is focusing on the need for appropriate use of statistics.
5:15 PM, Cochrane reviews, protocols and plans – again, can't wait for this.
Day two
Plasma metabolomics – a tale of two cohorts – Karl Morten.
10:15 AM is there evidence for T cell clonality a a ME/CFS biomarker? Chris Ponting reporting on the work to try to replicate the amazing initial findings reported by Mark Davis at Stanford of T cell clonal expansion in ME/CFS patients — potentially a smoking gun. Again, I have no idea what this is going to say.
2:15 PM abnormal cerebrovascular reactivity among ME/CFS patients. By Michael VanElzakker, and I'm always interested in what he has to say.
2:45 PM Bhupesh Prusty — I suspect everybody wants to hear what he has to say given the intriguing "something in the blood" findings he has reported.
Conference agenda attached, and here https://www.actionforme.org.uk/uploads/images/2020/03/CMRC_2020_programme_Final.pdf
Andy
Retired committee member
From the final programme linked to in Simon's post above.
We, the committee, have been contacted about the forum taking part in the Priority Setting Partnership process. We feel that this is something that, in principle, it would be important for the forum to be part of, but at this moment we are still trying to clarify the details of our potential involvement, which is why we haven't brought it to the forum membership yet.
ETA: I have created this thread, Priority Setting Partnership for ME/CFS, for discussion of the PSP.
We, the committee, have been contacted about the forum taking part in the Priority Setting Partnership process. We feel that this is something that, in principle, it would be important for the forum to be part of, but at this moment we are still trying to clarify the details of our potential involvement, which is why we haven't brought it to the forum membership yet.
ETA: I have created this thread, Priority Setting Partnership for ME/CFS, for discussion of the PSP.
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The accessibility bit has not really taken hold.
Given the circumstances this year in particular, I would have thought live streaming would have been a no brainer.
I don't have a clue as to what lead times would be involved to facilitate this though
I decided not to go. I'm really disappointed not to be there, but I was concerned about getting entangled in international travel restrictions/cancellations and geographic lockdowns and not being able to get back to US. Berkeley has cancelled on-campus classes and moved them all online at least through the end of March. Stanford, Columbia, Harvard have also.
I don’t blame you it would be a nightmare to be caught in quarantine away from home.
I think that is the right choice.
Non-essential travel should be considered a luxury until this is under control. Especially for those in higher risk groups, like the over 60s.
MSEsperanza
Senior Member (Voting Rights)
Sly Saint
Senior Member (Voting Rights)
what about 'pacing up' doesn't that count?
https://www.s4me.info/threads/pacin...oklet-revised-and-updated-january-2020.13320/
Sasha
Senior Member (Voting Rights)
I'm relieved you made that choice, Dave! I think this is no time to be away from home.