I have the opportunity to give a presentation on ME/CFS to the local branch of the political party that I am a member of, and while I may not have the resources to take advantage of it, it did start me to wonder what local level advocacy 'asks' I could I make at the end of the presentation. Obviously there are the large structural issues like better research funding and medical care but I'm more thinking of things that individuals who might be inspired by a presentation can do themselves.
Any and all ideas appreciated.
I will have a careful think but yes it gets complicated about where to begin as the right message is as important as to who and where given I'd imagine the 'getting done' will involve talking to whoever itself and then the palaver where they convince said politician of eg the solution being to get us all to CBT and noone will need to worry
However off the top of my head I think the most important first steps are indeed:
- slowly getting proper allies who understand both the condition properly and then some very specific asks (and that the current bacme/iapt/bps offering is neither helpful nor cheap in as far as how much funding goes into those bps kingdoms and research overall) that somewhat describe the can't win space that most of us live just trying to survive due to misinformation vs both actual support and day-to-day things that crop up
Sounds small but I think there is an 'ad populous' effect going on where things go backwards because those believing in certain ideas are most vocal so everyone assumes that's the truth and so when anyone presents with a problem they look like they've a motivation issue without trying to explain how the illness makes sorting it themselves impossible (why can't you just make the phone call yourself?) and how these seemingly nice people are inadvertently making things impossible because they've been misinformed that we aren't that ill etc.
I do get however that we need 'the list' to try and describe why that matters and the problem is that 'it's everything' from employers, to retailers to services of all kind and so on. And the varies in severity and situation as to what will crop up next and for whom.
We probably need the below to actually even help us in articulating and being believed on some of these issues to get across 'the nub'.
- getting local advocates who are specific to ME/CFS. I can't find a way around this, and it needs to be assured that these are going to continue to be people who won't over the years end up doing their own thing or coming up with 'helpful ideas' along bps lines because someone suggest it helps.
There seem to be ones specific to autism or learning disability or other illnesses in certain areas - I don't know if there are any good models as you just hear the odd good anecdote. But they seem to have consistent people who will be able to do the talking for various issues that are likely to come up eg school meetings or whatnot.
Sadly it is impossible to nevigate most/many(?) services due to misinformation but then most 'help' provided generically to cover everyone who might struggle has been taught the misinformation badly enough that it not only takes as much time educating said 'help' but that help is only allowed 'x amount of time per person' and/or they get put off when what we try and tell them about cfs not being treated by cbt then we get quietly dumped. SO that becomes an added waste/suck.
In some of these cases the most important thing we need is also witnesses who know enough about the basics they aren't going to side with the person suggesting we just 'try and do a bit more each day, then we don't need x' and come back to us thinking they are bringing good news having 'talked for us'.
Even paying for a service doesn't mean we don't get that energy waste so there is nowhere for us to go. And we'd need so many more hours not due to fault of our own to sort issues either due to explaining the illness but also the disbelief issues and why x is an issue.
And without that we can't access the actual services themselves, which we need advocates for.
I also get the impression that if we had consistent witnesses and advocates they would begin to see the pattern, consistency in what gets thrown at different pwme or they could even do a mystery shop to test that could be advocated for not 'being us'. where everything might be hidden under claims of 'reading into it, maybe they didn't mean it that way' and the oversensitive trope cleverly (and I've noticed the game of attrition of energy is used a lot knowing you can't reply to correct a 'this is summary of conversation' email that is false for example) when someone is only seeing it happen to one individual. Eventually what happens can be so preposterous they look mad for telling it.
But also if we had a dedicated proper advocate service that could really be trusted then they could cut a lot of the describing work because there will be common issues. So you suddenly have someone who gets what a neighbour or building projects noise will do to someone with severe ME/CFS and what might be possible, or how moving parking will make something previously accessible into something inaccessible for a pwme, or wheelchair services or even shops work and if there needs to be a new framework that fits ME/CFS etc. or a service that can offer the middle-ground and give advice so people don't waste their money and energy buying something wrong and the issue of how that might be transported.
It could have a list of trusted suppliers like AgeUK does for tradesmen or whatnot and help sheets both ways to ease communication and what is involved with certain tasks.
