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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.

My mate (who claimed his name was Myx O'Lydian) used to make up codswallop like this and post it on Wikipedia. I'm wondering if he's at it again.

The issue is that organisations, government bodies, etc now insist on photo ID. My cousin had to apply for a provisional driving licence for her elderly mum-in-law when was widowed, as the combination of an insistence on photo ID and some of the couple's accounts and paperwork only being in...

I hadn't heard about this, but I wonder if the denial was meant to be aimed more at healthcare professionals? I can see why it would be misunderstood as an attack on patients, even if it was actually meant in the spirit of support. People with ME have been pushed into a black hole created by...

That would probably save a lot of money, morbidity and lives...but I guess it also risks creating so many sub- and cross-specialisms that you eventually end up reinventing general practice!

Fair points. Perhaps I should have said something like cynically made-up diagnosis. Because whilst it was initially reasonable to formulate and argue out the BPS theory, deploying it in clinical practice without any supporting evidence—and claiming that just knowing is evidence—is a different...

I was just about to post the following... It's the hijack that bothers me. If doctors recognise a cluster of signs and symptoms for which a cause hasn't yet been found, they will give it a name. If they don't know how to treat it, they will say so. That's one thing. It's quite another for...

This also holds if patients are given a made-up diagnosis. And no level of confidence or authority will negate its made-up-ness.