YepA significant proportion, if not a majority, will not have been given basic information on factors that need to be understood to begin self managing the condition: including PEM, pacing, sensory hypersensitivities, OI, potential food and drug intolerances, the unlikelihood of recovery for the majority, the absence of any effective curative treatments, etc.
I reckon as well that whatever you name it as or they’d be willing to acknowledge
I’d guess if put them all in a situation where they had to stand up still and couldn’t instinctively do things like moving feet, lean or perch etc then they’d all feel pretty unwell by twenty mins in or have had to ask to sit down