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I agree, I'm quite willing to believe Walitt really thought he could use fMRI machines to find the toadstone. And it doesn't surprise me that, millions of dollars later and having not found it, he felt a need to claim he'd caught a glimpse of it. What really disappoints me is how few have...

This is what grieves me so much about the waste. Care for chronically ill people needs reorganising from the ground up, to recognise that significant improvements to people's lives are possible if you stop spending money on pretending to do what you can't, and start spending it instead on...

The whole thing appears to have been a decades-long academic exercise. There's almost nothing in the publications about trying to find out what patients need or want. The entire focus is on measuring outcomes, and the sole objective is sustaining further study of measuring outcomes.

They're not. That's crucial in sustaining the model, because if people knew the risks of engaging with these programmes, they wouldn't touch them with ten-foot pole. It's presumably the reason an entire branch of the industry has sprung up to discredit those who've been harmed.

I was very disappointed at the lack of a bedtime story in the offer.

Guys, I think we could do at least as well between us for next 1 April! :rofl:

And it isolates the victims. My friend was a shy 12-year-old when she had to front up the most intimidating teacher in the school. Students of colour probably made up about 12% of the population, but as far as I know, no one else in our year group ever made a complaint. Having to endure it was...

That's interesting, because I've been wondering if one specific thing could potentially be assessed: the quality, clarity and usability of pacing and management advice given to newly-diagnosed patients. I've had briefings on everything from post-operative care to using mobility aids to...

In 1971, my friend asked me to go with her to see the deputy head. She was the only black pupil in some of our tutor groups, and wanted to complain about almost daily racism from other pupils. His response was: "Well of course what X said was wrong, but you know, if you complain about every...

In other words, this 'rehabilitation' is for people with illnesses, impairments, and living situations that can't, in many cases, be rehabilitated. So is the word rehabilitation is used to make it sound as if the service is doing something that can (unlike the ongoing support that some of them...

From @MSEsperanza: Probably not relevant for the main points of the discussion but the abstract only says the controls had mostly sleep disorders while the FND group had functional movement disorders (demarcated from "various neuropsychiatric disorders including the seizure subtype of...

But it could be simpler than that. Doctors could say there are a lot of things medicine doesn't yet understand, and this is one of them. Why is there one list of things where it's acceptable to admit lack of knowledge, and another where a story has to be concocted because it's not?

Sure, but in the world of proper medicine I get the impression they'd be under the auspices of the same clinic. The mode of delivery might be different, but it's usually managed by the same consultant(s) even if additional specialisms are needed for severely ill patients. I just worry these...

Are there other diseases where NHS clinics deem some of the sufferers too ill to accept as patients? I can't think of any examples at the moment, but maybe there are.

Good point, but there are no services for most pwME in the NHS. Once you've been diagnosed and gone through the pacing and management advice, that's it. Many long term patients have either never been referred to an ME clinic, or haven't attended one for years or decades. There is no...

But that might be the point? Doctors who use the term FND in the straightforward sense don't seem to be trying to explain the cause, they're trying to say the cause isn't known. If it's producing neurological symptoms there's a good chance there's been some shift in neurological functioning...

Until we know more about it, maybe those explanations are placeholders as much as anything? A "subtle shift in brain function" covers a lot of possibilities, and it doesn't even suggest the brain is necessarily the principal cause of the symptoms. Its function can be influenced by all sorts of...

Yes, absolutely. If functional means cause not yet known, it's as good a term as any. The problems start when there's a suspicion it's presented to patients this way to make it acceptable, but between doctors it means the cause is known, ha ha, it's hysteria, wink wink. It's funny how there's...

So just for clarity, @FMMM1, they're electroplating a measure of imaginary outcomes.

I reckon so. As usual, it misses the point that what patients really need is help with all the crap that happens when the rug gets pulled from under your feet, and most of it isn't medical.