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

[InitialConditions]

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.

I agree. We've got patients at the table now. PAG must continue, and I hope they can recruit enough new members to lower the workload on individual members.

 

[Adrian]

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 number is up to 20 which helps spread the workload considerably. But having a larger number of people allows for views from a larger population of people with diverse experience to be represented to researchers and for projects and currently for feedback into the UK ME delivery plan. It can also help avoid things like group think etc.

As with any group, including here, a few people take on a lot of the work but groups can collect and represent a variety of information. For example, this happened here in our feedback for NICE (where you and a few others took comments from members on threads to use in our response).

This does mean that the overall workload for many doesn't need to be that great. But there is an intent to rotate through those doing the co-ordination work (but as you know from here that doesn't always happen well).

 

[Trish]

Thanks for explaining.

 

[NelliePledge]

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Unfortunately the secretariat support, once provided/funded by AfME and MEA, was withdrawn.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.

I would have thought this would be a priority for the charities. If they can’t fund need to get bidding for lottery funds, get on to some of these trusts that are happy to fund Crawley.

 

[Trish]

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.

I agree. We've got patients at the table now. PAG must continue, and I hope they can recruit enough new members to lower the workload on individual members.

I really appreciate these explanations, and have now read more carefully through the materials and application process. I agree it's important to have the patient/carer voice fully represented at the DHSC groups set up by Sajid Javid, and can see why there needs to be more people available to do this.

What I'm not seeing in the description of how the PAG operates is why people suitable for those roles and for other research and medical education roles also need to commit to being part of an ongoing group of 20 with its own private (secret) regular meetings, commitment to take turns chairing, expectation that some will provide admin services etc.

I can see the value of having a list of people with suitable skills and experience being available to be appointed to serve in particular roles, but why does this require them all to be sourced from within a private 'in group' whose meetings, activities, membership, and even the process of selection to the join the group are so opaque.

I admit that reading through the description of the way the group functions, with interesting sounding discussions in private slack and email groups etc. made me feel excluded from activities I'd love to be part of, but am too sick to apply.

 

[InitialConditions]

What I'm not seeing in the description of how the PAG operates is why people suitable for those roles and for other research and medical education roles also need to commit to being part of an ongoing group of 20 with its own private (secret) regular meetings, commitment to take turns chairing, expectation that some will provide admin services etc.

Because individuals represent PAG at such meetings, and PAG therefore needs to discuss their collective position on a range of different matters — one that should be in line with that of the wider patient community (if possible) — both before and after meetings. Otherwise the individual is just representing *themselves* as a patient or carer. Further, these roles are often too much for one individual to take on, so there is rotation amongst the group, to account for illness fluctuation etc. And at the weekly meetings, all the different activities are discussed for feedback etc. At the very least, PAG has to meet before all these other meetings (MERC, FME, DHSC) to decide who will attend, and then after, to report back.

 

[Trish]

Thank you for your patience with me and your explanations.

 

[bobbler]

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.

100% agree. If you haven't experienced severe or very severe and haven't had ME/CFS for a certain length of time with a variety of different life situations (because you might be fortunate and accepted for a few years, and generally be OK with the say 2-3yrs 'whilst you recover'...... and then it gets boring, problematic, not temporary etc) you can't understand much of these real issues than can crop up with these. EDIT: I don't know how to put this well, but it is stuff you can't anticipate or imagine easily because of how the being boxed-in energy/health-wise accumulates on issues over time (one issue creates another too)

I don't understand the 'recovered' - the idea of one out of 20 is still generous based on the stats, and there is a worry that people get carried away when they have a good few years (or perhaps were one of the fortunate who did recover but don't realise that) and attribute more to certain things than might be relevant. Those who became severe and spent 5-10 hard years winding it back to less severe a different matter altogether.

You can't imagine severe when only ever moderate/mild much better than someone genuinely trying but who never had ME/CFS can imagine mild/mod, it is all academic thought exercise and misses things you only know and notice if you've been there because of the nature of the quicksand.

I worry when demands are talked about as having to be carers and only mild. One massive oversight in understanding the fundamentals of what the condition is they are studying has been 'splitting the spectrum' (given anyone might theoretically get more and more severe if put in enough over-exertion over enough time), with support of 'advocate' or rep maybe, but otherwise you exclude what could be (I think is) a significant group of those who are pretty severe and don't have a supportive partner or relative and are commonly unheard because of how impossible that makes for as even a basic life situation re: access etc. And because of that needs to be represented.

Similar to those who are mild/mod and have little support and are having to work - won't have the spare energy to participate unless something helped to change this balance (advocate support and/or financial/working with employer to allow the space to participate), and yet are again probably the more common group and situation (before it all ends up making them more severe) given current set-ups and again a highly pertinent situation to represent.

Some of these boxes might be ticked by the odd person who had these but are now in better situations, but the nature of the illness is such that I'm not sure how many who've really been on those front lines will have recent enough experience and yet be in a changed situation enough without some bridging support.