I'm divided. I 100% agree with what you are saying, and I don't think it does much for longevity of any issues if they haven't anticipated that working out how to spend something well might end up being the harder task than getting the money
I know there is a chicken and egg situation going on re: funding, but historically we've been played pretty well for many years with claims of 'there's funding but noone seems to apply' - and has anyone confirmed what's actually going on there, are there some weird criteria or something ? I think this issue is worth dissecting too.
Out of curiosity there was a post a year or two back of I think Action for ME advertising for a research admin type role that was at least reasonably (but for the level of qualification you want not 'brilliantly high') paid - I can't remember the details at the time but it seemed to be about trying to get a bit more organised into a strategy of what was needed. I assume it might have been able to pipeline support with funding applications and also scouting those who could have useful skills and just don't know enough about the condition and how to put those two together also.
Does anyone know more about what ended up happening with it?
On the other hand the only campaigns that are going to do well I think for ME currently are going to be the ones that talk about cure and moving things properly forward. It just isn't sexy and pretty hard to get across how 'worth-having' and 'important to reduce unnecessary intolerable hardship' it is for someone who is severe or very severe to get an extra 10% health (if even that was possible from a combination of carefully managed treatments and sorting out the environment etc over time), because it means they can now wash themselves sometimes and/or get the odd bit of social contact vs the hell of the dark room.
But 'treated properly' might work given they've coordinated timing with the inquest so hopefully people know there is an actual issue (though that comes with the usual catches of people who claim their initiative is just that 'special treatment' that puts laypersons mind at rest whilst not really making things much better)
Much easier to sell a happy ending that laypersons can relate to vs the people who respond to campaigns to keep someone in an awful situation's head above water seems to be the truth on what gets traction. And whilst you can't define 'it's not good enough' then we probably do need some follow through so that for once the most knowledgeable and experienced of what goes wrong patients are informing anything new to see through any 'catches', to avoid one of the really big issues I think that happens which is paternalism.
Even if something is 'slightly better than it was' but still misses the point on how our condition works and the cumulative impact of something that has good intentions but doesn't get offering someone a nice-seeming therapy or kind person is actually taking energy - hard one to explain to laypersons who aren't massively interested in hearing mounds of detail.
And to be honest I think a lot of those who have had ME badly enough have at some point thought to themselves that the only way out is indeed something that does help the actual condition enough because it feels an unsustainable state of being. SO it is absolutely the only thing that laypersons might think makes sense that we are asking for.
Last edited:
