And it's quite hard to envision that until we see evidence a treatment can modify the disease.
I doubt even that would shift things quickly, but strong trial results would start the process. I think part of the problem is that doctors don't really know what to do with us; that changes if there are treatment options.
I’m not sure that will change the issue. If there is a cure that undoes all damage for everyone (unlikely as those having it worse for longer might have other things made worse or still bad left after ‘the thing’ has gone - another ‘splitting point’)
Then there will still be the split and spectrum between those who had it timing, length of time, severity and support wise how it wrecked all their human relationships- and no one wants to apologise nevermind look back and rewrite the narrative they stuck on someone for 30yrs and realise EVERYTHING they assumed in their story should now be rewritten to ‘oh that had something completely different and so when I thought whatever I do make it clear it’s ignore it or fail as I’ll make sure there’s no safety net to incentivise them each time and made them iller that caused the next thing that I called them even more pathetic git struggling through even more for’ etc
And I’m sorry but those who had it mildly for a few years that mattered less but kept their relationships, had a family they still have now and didn’t have the snowball effect of it affecting their qualifications do getting jobs that were tougher on them than well people had and having to perform twice as well in those just to keep them as well people because disability bigotry does exist and you know it every day. Well will they be like ‘well I’m now working so there’s really just psychology work need for those other people as it just just be trauma they need to take responsibility for’ instead of acknowledging they didn’t get the brunt of the whole world labelling them as a different person than they are whatever they did and were and even after it’s proven not to be that won’t give you back your identity or respect. Because it didn’t happen to them after 20yrs of being x having a support network when they were ill a few years those who only starting to receive the odd person being a bit funny are often even worse than those who never had me/cfs at all
Exact what @vrt says 2posts up and agree with
@Nightsong
We’ve organisations speaking ‘for us and about us’ who no longer ‘get it’ and I think that has changed over time or the problem ones within got quieted when it was just the guidelines committee and the staff working closely to finally sort the press issues were the focus back around 3020.
Theoretically even bacme could have some less ignorant members given the reigns and move out the evangelists from controlling direction and also be quite different, but it would require them to see that it’s going to be required if them / a come to Jesus that that’s where they need to head as the wrong way isn’t profitable anymore. Etc.
We I agree can’t do much huge fast but I think we can plan long and do good strategy to make the little we have count by not trying to compete on the terms of people with more energy by just taking on the work rather than being really smart about where we are limited and what we can ‘keep up’ and what we can do to get more on board who would help in the right way without it being free reign etc.
I think there is an internal community hearts and minds (not noise and passion) around having a doable ask and why we have to be precise in what we ask for not just fuzzy (and leave the one asked to do what they think.want/want to hear) and we need the same clarity and rationale and calmness to then work on a programme of not just ‘getting allies’ but ‘educating allies’ - and we might find the type who support us in what we need aren’t those who’ve been attracted to whatever those who say they are now think we actually have or that they’d dump on us if they were honest.
There are people out there though who do ‘get it’ but just are quiet until one day I have to chat about something else but their position isn’t easy because we’ve not made it easy for them. If I wasn’t ill I ask myself how would I support ‘pwme’ and know I wasn’t sponsoring someone or something that’s actually ‘the wrong thing’ with what’s out there.
And there’s loads - allies, well-intentioned public, and loads of one who can’t think and don’t think just liking and donating to the biggest and easiest thing atm . And that’s normally the big charity. Without asking if what they do is useful. Even when some things in fact seem dodgy they hope to assume it’s just a hiccup. And ‘where’s better’ anyway.
Well right now those people are getting repeats of old history instead of clear messages from the few pwme they are rubbing past subtly keeping them up to date by eg the fb birthday fundraiser that gently says ‘sewurnceME us where I want you to give funds if it’s in my name or for my illness (not just any old charity that uses ME in its name)’
Not everything has to be in detail unless someone asks (genuinely- if they are antagonists doing god the sake ignore em) because in the last decades people are aware of chuggers and some big scandals elsewhere meaning questions are more to be asked vs in the 2000s and so ‘not making the right moves’ or ‘supporting things that have been detrimental’ or whatnot is enough. Tactful and appropriate to context (if it’s a friend vs public on social media you’d be careful of it not being taken the wrong way).
But having somewhere else for someone who at that point is really only offering what they are offering - be it a small chunk of money or time to reshare something - in a direction that helps the right way and hopefully by doing that gets a message to others who might do the same.
What I think the research does do is provide those other , better things as directions that give those with good intentions ‘something they can do’
It is down to the community to then work on the other orgs that are an issue and get those who do have the right listening and governance more supported than those who don’t.
And I agree that even getting people in a close ish network to agree to discuss and then stick to a line …. Well that’ll need a new level of plan ?
