United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

With Sir Stephen Holgate stepping down as Chair of the CMRC, things at the CMRC have been a little uncertain as of late. The CMRC also recently lost its secretariat, which was Action For ME. AfME, and particular Sonya, has become very overstretched over the last two years, with key roles in DecodeME and the Priority Setting Partnership.

There was a proposal for the CMRC to be folded into ForwardME. The CMRC Patient Advisory Group (PAG), in particular, was concerned that this proposal would mean the relegation of the main body promoting biomedical research for ME/CFS in the UK, and felt that the CMRC should retain its independence and sole aim of increasing biomedical research funding and collaboration, while the PAG would potentially join ForwardME as a member.

Within the PAG, Opal was instrumental in securing Dr David Strain as the new CMRC chair, in essense securing the future of the CMRC in the short term. However, the CMRC still needs to find a secretariat or a suitable alternative to provide some funding and organisational duties.
 
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Sly Saint said:
Isn't Steven Holgate still a member of ForwardME?
Looking at the ForwardME website it's members are basically the same as CMRC.
https://forward-me.co.uk/meet-the-team/
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That's the Steering Group you're looking at, not members. The ForwardME members are generally (representatives of) the numerous different charities, and then some individuals.

There CMRC members are generally individual researchers, like Chris Ponting (who is Deputy Chair).

I presume Stephen Holgate is still on the FME Steering Group.

Edit: There is, of course, overlap between the FME SG/members, and the CMRC members/board
 
MEMarge said:
SH is listed on the Members Page https://forward-me.co.uk/our-members/
This has a title of Members and Professionals.

It also lists him as chair of CMRC in this bio, so not very clear what his involvement is.
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That's outdated info, but I suspect even thought he has stood down as CMRC Chair, he will remain on FME Steering Group, though I notice he hasn't been at most of the recent meetings (probably too busy).
 
InitialConditions said:
That's outdated info, but I suspect even thought he has stood down as CMRC Chair, he will remain on FME Steering Group, though I notice he hasn't been at most of the recent meetings (probably too busy).
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So if PAG are going to remain "attached" to CMRC will you still be involved with Forward ME or not?
 
Merged thread

UK ME Research Collaborative (MERC) - Applications invited for Patient Advisory Group until end of Feb 2023

Are you interested in joining a patient and carers group which plays an active role in promoting the voice and inclusion of people with ME/CFS in research activities?

The Patient Advisory Group (PAG) to the UK M.E. Research Collaborative (MERC) is recruiting a number of new adult members, based in the UK. We are running a rolling application process that will be open for at least three months from the end of November 2022.
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https://meassociation.org.uk/2022/1...tions-invited-for-merc-patient-advisory-group
 
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Adrian said:
I think it should go back up soon (also to be posted on social media and via AfME). I will post links here as well.
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Adrian, I know you're really busy, but the MEA page for MERC and PAG desperately needs updating (https://meassociation.org.uk/research/cfsme-research-collaborative/). Perhaps now is a good time if this ad is to be posted, otherwise it gives inaccurate information about MERC and PAG. I think Russell Fleming does the MEA website, so I wonder if you could bring this up with him....
 
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I'm curious about this:

We seek to have a balance of those who have recovered from ME/CFS, those who are mildly or moderately affected, those who are severely affected and carers.
What is the numerical interpretation of this 'balance' I wonder. If it were based on percentages thought to fit in each category, then in the 20 people one might expect, say, 1 recovered, 4 mild, 10 moderate and 5 severe or very severe (of necessity given the work load, these are likely to be carers).
 
Trish said:
I'm curious about this:

We seek to have a balance of those who have recovered from ME/CFS, those who are mildly or moderately affected, those who are severely affected and carers.
What is the numerical interpretation of this 'balance' I wonder. If it were based on percentages thought to fit in each category, then in the 20 people one might expect, say, 1 recovered, 4 mild, 10 moderate and 5 severe or very severe (of necessity given the work load, these are likely to be carers).
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I think its around an intent to select people with a diverse experience rather than exact population representations (which I don't think there is any acurate knowledge of relavent proportions anyway.

I see it as encoraging people with all types of experience to apply and saying we will try to select to get a balance
 
I agree it seems to be really only feasible for someone with mild or the milder end of moderate to be able to meet the demands, with the added constraints that they would need to be in the relatively luxurious position of not needing to expend all their limited energy caring for a family and/or earning a living.

My concern on 'balance' is about this resulting in a preponderance of people with either only mild experience, or experience of significant improvement or recovery, giving a skewed impression to researchers they talk to that mildness and recovery are the norm.

I guess we have to trust that the CMRC will be able to find 20 people sufficiently scientifically literate, with first hand experience across severity levels and with time and energy to devote to this without any financial recompense.

I have no real idea of the contribution the PAG make, as there seems to be little or no reporting back on the direction or outcome of all these hours of dedicated service.

I don't want to sound cynical. I am not in any way criticising the individuals involved, in fact the opposite, I am hugely grateful that they are prepared and able to serve the community. But given the huge needs for volunteers of ME/CFS charities and organisations locally, nationally and internationally for patients and carers to participate in and help to run patient organisations, advocacy, research, and groups such as this forum, it seems like a lot for MERC to expect the volunteer services of 20 people, some of which might be better spent in other ways.
 
The real issue with PAG is the amount of admin work involved. That sort of work is not easy when you have ME.

Unfortunately the secretariat support, once provided/funded by AfME and MEA, was withdrawn. I still don't understand why they won't provide some further support. A related issue is that MERC itself has undergone a quite turbulent time over recent years, and is essentially on pause now that the UK ME Delivery Plan is underway.
 
Trish said:
Thanks, @InitialConditions. It seemed pretty crazy to me too to waste pwme's energy on secretarial support. It sounds like it might be be better to pause and rethink rather then recruiting.
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The PAG are currently heavily involved in the UK ME Delivery Plan and this is most of the activity and why more people are needed as its creating a high workload on a very small number of people. Its one of the reasons for starting this recruitment process.
 
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