Search results

Yep. Some brains cannot comprehend the critical difference between PEDE, paed, and pedo.

For me it is mainly lack of capacity to engage (beyond S4ME, and even that is increasingly limited), and severe lack of funds to otherwise support others' work. I do donate a bit, but after 40 years of well below poverty line income there just is not much to spare. Indeed, now I am entering old...

Children should not be experimented on until the treatment has been proved both genuinely safe and effective in adults. Especially vague dodgy psycho-behavioural treatments with shitty track records. So, a flat no from me. (Option 3B)

This is one of the best and most important posts on this whole forum, and it needs to be spread far and wide. Thank you, @Trish. :hug: What they said. And especially this:

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.