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And so they don't.

putting the responsibility on the patient to know whether they're doing too much or not enough, but at the same time telling them they're not actually competent to decide for themselves Yes, unacceptable.

Yes. Enduring suffering and death absent medical care.

It should.

Shame indeed.

Every word, well said.

The whole summary is impressively detailed no wonder you're exhausted. This is such a unnecessary burden to place upon pwME & their people. I am so grateful you're here and using your precious energy to unburden us. Your list of remedies is excellent.

Yes. The foundation stone. People, professionals, who feel free to invent and recycle stories about us, our minds and bodies. Based upon nothing. A whim. A sand castle. No room for scientific rigour or ethics here. A material need to preserve a long held paid role, for themselves...

Harvest your DNA & biological data to later profit health insurance firms who’ll be denying you or your relatives current & future coverage. Quite possibly that’ll be the least of it in terms of eugenics.

Oh dear… This isn’t a surprise. But still a struggle to manage the disappointment that we don’t yet see a change of approach from the people who could- if they chose-help us. If not now when?

:confused: Don’t they want an abundance of researchers there?

Think there’s a discussion somewhere here from a year or two or three….ago where we were exploring the possibility that pacing is best done away with as related to this illness, and we concluded, on the whole, that the answer was yes? Perhaps I am projecting tho because I want rid. Aside from...

I think that was the note that I finished with, I understand the requirement. I was just wondering since medicine often doesn’t meet such requirements, why this particular category specifically was problematic. I’ve read a fair amount about POTs and I still don’t understand what it’s supposed...

I like this. I’d take it.

For OI, one could have symptoms other than raised HR or in addition to this, but is HR not measured because it can be measured and it is a common symptom that some or perhaps many people find tracks well enough with their other symptoms for it to be worth paying attention to? As for POTs I am...

Posts moved Why are POTS and OI in general flawed concepts?

Or a lack of predictive capacity on my part ‘cause…

I was agreeing with you. Are you disagreeing with me or….?

Mmm. Incurious enough not to bother laying down a foundational understanding, a flourishing academic career never demanded such. Or maybe even required a leap frog approach. Or, accidentally on purpose? A highly incentivised approach. Moving on from such knowledge. Selling something poorly...

Yes. We do.