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Does have the somewhat problematic acronym of PEDE.

Worth repeating.

Inspiration porn. (Criticism of the media, not the person with ME.)

leads to extreme exhaustion Exhaustion is a better word than tired or fatigue. "We want to call the disease 'acquired mitochondrial myopathy'." Not yet.

And avoid cold buffets. Stick to the hot food.

And some will not even then.

IIRC insurance company admin and profits accounts for a huge chunk of those excess costs too. Count me among those opposed to the insidious privatisation of health. Or at least any of it being paid for by tax dollars. If a citizen wishes to pay for a private health service out of their pocket...

Uh-oh. :panda:

I think the single most important fact about human psychology is that we see what we want/expect to see, and it takes considerable disruption and contradiction to get us to see otherwise. Which is why robust methodology is so important.

THIS! It is infantilising, intrusive, and insulting.

Evidence Unmasked ME/CFS Research Unmasked Behind ME/CFS Research (Could substitute Science for Research.) ––––– ME/CFS Research for Dummies :sneaky:

Whose perception? The patient's, or the clinician's?

The whole purpose of this is to reduce the demand on the health system by discouraging patients from reporting these symptoms in the first place, not to actually treat or cure patients. It is a political and cost-cutting project, not a science-based medical one.

And disgust.

Good point. The name needs to be distinctive enough to not throw up vast numbers of irrelevant results in a general search engine.

But many diagnoses aren't as definitive as we think. Unless it is a psychosomatic diagnosis. Then it is inviolate, and how dare anybody suggest otherwise.

Combine angry Aussie koala with polite English restraint. :thumbsup: Nice work, @Trish.

:D

The one thing you can never get those who have seen the light to do is shut up about it.

ME/CFS Science Scrutiniser ME/CFS Science Auditor –––––––––––– I would definitely keep this tag line immediately underneath whatever name you end up with: "Bringing clarity to ME/CFS research findings"