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There is evidence of perturbed microbial and host processes in the gastrointestinal tract of individuals with functional gastrointestinal disorders (FGID) compared to healthy controls. So when you will stop calling them functional disorders?

Lack of support leads to poorer health and increased social costs. So start offering meaningful support (including long-term research funding), not this infantilising psycho-behavioural fluff that could be written on a single page in large font and posted to every citizen for virtually no cost.

That is appalling. Besides being wrong overall, it places the responsibility for success and blame for failure right back on the patient. They are never going to give up their rehab and recovery framing, nor take any blame for it not working. Mostly by getting out of the way. Don't rule out...

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.