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

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.

 

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.

 

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.