Do people think it would be useful to focus advocacy efforts on specialist provision for people with severe and very severe ME to begin with?
In their case, there's no argument about a lack of effective support and treatment, and no one could argue 'therapist'-led rehab clinics are suitable for people who're so unwell they're not ambulant and in some cases can't eat. They need care from doctors, and a centre set up to provide care and develop protocols that could be rolled out more widely would gain significant understanding of ME/CFS.
If a specialist centre like that were established, it'd have a chance of gaining respect from other doctors. It seems that's required before anything else can follow.
I agree but with a however - which then starts to make me think something more nuanced is needed here. Specialist provision is an ambiguous term.
I definitely agree in as far as the starting point needs to be that care offered needs to begin with the illest, as it would for any other medical condition, and that works and measures proper outcomes long-term like you'd get for cancer or heart wards. And not, as we've historically had dumped on us, the starting point being the mildest (to the point they might just have fatigue and we've clinics for 'MUS' or whatever delusion that weirdo part of healthcare is imagining).
I do think that siloing the most severe into one hospice and calling the job done isn't the answer, and is dangerous. So really I'm not sure it is just one, and it absolutely has to be biomedical doctors and scientists and big enough that research and learning is taking place (which is where I think limiting 'intake' to very severe/severe is a question). And given even clout as a 'institution' to have a chance it will be able to change the rest of what is done over time (and a heck of a plan there in the mean-time to call that resource-leech out).
I don't think that separating the spectrum has done us any favours/ it's been part of how we have been screwed from moving forward. I think it could/would be a mistake because
size is going to matter, as well as the logic of the condition [it gets worse with exertion etc long-term and isn't just 'people with a bit of post-exertion fatigue' complaint] being studied, in the unavoidable issue of going up against this 'functional industry' to really get anything that sticks with anything there is a critical mass I suspect.
I absolutely think the aim needs to be proper clinics led by biomedical doctors and biomedical science, with support from nurse and a team who know what they are doing on implementing practical care and adjustments. They need a fighting chance to be respected and still exist as intended years down the line.
I also think that even if that was done the next step would
still have to be changing the hospitals to be safe somehow (blows my mind the more I open my eyes to it and realise what a massive delusion issue there is with this HUGE 'functional' emperors new clothes resource such that 'helps' noone but has a huge mouth and amount of funding).
It isn't just 'for ME/CFS specialist care' that the treatment door is closed. It is a barring of
people who have the condition from
any healthcare.
Which when combined with serious illnesses goes as far as behaviour so deluded it leads to watching people die. For care that isn't specific to ME/CFS, certainly not re: equipment or skillset to eg do feeding tubes.
All for the belief mis-sold deeply by a few, that those of certain demographics have to be weeded out as 'functional'. Pushed by papers like this (and the ones above it):
https://www.s4me.info/threads/financial-outcome-measure.39312/page-3#post-548092
And having funneled the illest off under someone in the back of beyond doesn't help the delusion that 'it's something to do with
us being weird' instead of brainwashing into NHS staff some very weird thinking invented by others.
But the only other way I can see to guarantee to keep the very severe safe right now would be super-protections where the hospital has someone there ensuring they are kept safe from all these issues and not being treated for reasons of bigotry. Who has a very big stick to enforce that vs the pressure from colleges on doctors to kiss the ring on believing in unicorns. Maybe the middle-ground is decent centres in some big hospitals?
But both aren't going to work for very long unless the planning includes a way to go up against that massive money-spinner (for those selling 'functional') who are determined to keep pretending 'it doesn't exist' in different veiled terms (a la the 'CFS is a delusion on has an illness called ME' propaganda-mill has gone into overdrive I think) needs much bigger than a few siloed genuine staff. And a way forward that will change the main healthcare to remove those tentacles of the functional industry picking off patients. Otherwise even if in the right hands to start with these centres will change hands.
So at the same time I think all those 'fatigue' and functional type centres and the BACME type staff need to be firmly removed, after staff have been deprogrammed and offered mental health support for that transition (otherwise they will just hit other wards with it). And there does still also need to be a massive removal of all of these functional initiatives that are embedded into processes spilling misinformation causing confusion. And hospitals and infrastructure will need ways to deal with professionals who have these 'belief' issues etc still.
