This offensive junk is far more dangerous than whatever RFK Jr is doing as health secretary in the US, because although it's just as wrong and absurd, it's taken seriously by the medical profession, making it more impactful. Absolute waste of money for a research fund that is supposed to be about innovation, and only serves to kill it entirely. Medicine is enshittifying faster than anything else, mainly because it operates in a completely insulated bubble, untouched by anything outside of it.
And because the review and validation process is completely broken, notice how the highlights include the idea that "clinical clues may identify patients at risk of converting to Alzheimer's disease". Which makes no sense, they have no such clues. But also there is zero additional mention beyond being in the highlight other than the paper being tagged "conversion disorders". So they put in highlights something that is literally not even discussed in the paper. Just a clue, a hint: think conversion disorder, everything is conversion disorder.
Also, there is an odd misrepresentation about Stone's website: it's not for patients, it's for professionals. They use it to send patients away. For patients it's utterly useless, its only function is allow clinicians to give up while feeling good about it.
It is and I can’t help but note the very specific context Alzheimer’s has always presented in the UK
Basically uk people are responsible entirely for their own care costs in old age. Unless their income and savings (including the property they live in) are below a certain threshold - and then they don’t get to eg choose their care home etc. But it’s different if they have an illness that isn’t ’old age’ and need care. Although of course that last one is another social contract issue to look at.
It has been an ongoing ‘third rail’ issue for elections (eg Theresa May talked of capping this liability and there’s been talk of ‘just £100,000’ or ‘just £23,000’ of peoples savings that I can remember) because eg an old age home is so expensive a whole inheritance and having to sell home in that can be gone from eg just a few years care or less.
But people with AD in particular can be so ‘ill’ they need to be in a home with 24hr care …. for eg a decade.
It’s known as in the UK the one from a finances for family perspective the one that wipes people out and more.
AD is an illness BUT it’s the one illness where from a ‘who pays’ situation for some reason it is counted as the ‘old age’ scenario when it comes to care , instead of ‘nhs disease’ eg if you got cancer.
This seems sort of based on weird historic assumptions, not noticing it can be early-onset and assuming its similarities with ‘other types of dementia’ seen as old-age rather than what’s clear in recent years to be illness.
I’m never surprised when I realise how certain groups are the most vulnerable (we are one and should have had protections from what we now see with gravy trainers lining up to take advantage due to the unique lack of oversight healthcare has for understandable reasons of politics not running it, but that accountability never having been replaced leaving concentrated power for a few in healthcare over certain individuals) that this one crops up because if you’ve ever been near any family where Alzheimer’s has been part of their life you are very aware of this.
I find this another unconscionable situation given what those with AD have suffered thru historically and are still only just getting some research results etc to have someone doing anything that might undermine the research and prognosis stats by siphoning off or splitting out , just as we have for cfs, those less ill into other buckets where that early stuff then isn’t being studied as part of the proper trajectory by the right illness experts.
But I can’t help but assume there is something going on that squares the circle on these two well-known aspects that I just haven’t put enough thinking towards yet.
I can see a two tier system tho where those in a position to get good healthcare get cutting edge early diagnosis, treatment and support (as much as it can be for AD) whilst the poorer/those in other parts of the country get bucketed to miss all those windows and be treated behaviourally as if they just need to practice their cognitive function
And it feels like taking an nhs for all and distorting it to all for some and ‘job coach’ type treatment for the rest until they are so ill they can’t fight and get on record they had AD all along and got mis treated etc and the whole family is too overwhelmed having to just sort whatever care with the crumbs this ‘intervention’ has left.
