i cannot follow forum or threads adequately but:
The supplementary material includes the full questionnaire. It consists 55 concrete questions about activities where you can give 7 different scores, depending on how impactful it would be for you (thus including PEM).
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is this adequately aware of disease progression? and adequately aware of levels of severity?
unless i am missing something, which is likely given that i only saw this post, this is unsuitable.
for context, on teh scale that has moderate = housebound [leave house once every 6 months or so] and severe = bedridden [vertical for bathroom], i am relatively recently at very severe. my doctor diagnosed me as such. i a very close to extremely severe.
each new severity level is a qualitatively different disease in a sense. it is not "more of the same just worse". it is like normals thinking m.e. = marathon run pleasant fatigue.
[digression but for example, for most of my life i have had delayed/reversed phase circadian sleep. doing what my body wanted was best for my body; fighting it to meet society's whims and desires and norms and manufactured needs was wrong. but recently, it feels to me like the body must have many diurnal / circadian rhythms [cell waste, consolidating memories, immune resetting, who knows], and now, more of them are out of sync. the result of that, it feels like, is that fighting the reversed phase is better for me because sleep before dawn is highly significant for health/pem although extremely difficult to achieve.]
i must be missing something because here is my case: if i have to exert or get hit with intolerances [e.g. standing up for a few seconds, talking, eating, lifting arms, mold, noise: any impact on system], i can experience worsening.
that worsening can be, for example, a very severe worsening of oi or cognition or stamina. it can vary and it is not always predictable.
if i am lucky, the worsening from that one exposure/exertion/intolerance exists only at that time, or only for hte next few days, as referred to in the picture in the post i am replying to. [also, incidentally, the worsening can be one of hte answers or more than one simultaneously. not mutually exclusive.] but it can also be permanent. i.e. never recover to any given point after it.
this has occurred many times. this seems a likely component of my progressive course. i do not know what the other components are. in principle maybe much of deterioration is due to the accumulation of pem-causing events.
significantly, if i get good restorative sleep, perhaps needing also on nights /after/ the night of the exposure, which might require high levels of medicines due to very screwed up sleep and diurnal / circadian cycles, i /might/ get back toward, or even back to, the pre-exposure status.
[it is possible that e.g. next-day worsening is to some degree a consequence of sleep on exposure night being screwed up.]
restorative sleep is for me /healing/. [it is not a brief respite, except in that further pem later makes me worse.] in principle, if no further pem [not in practice given env, internal body functions, etc.] then that restorative sleep could keep me at its level for long periods.
btw, there are more things than functioning that matter or for deciding whether treatment works etc. i hope the authors ack that.
in the above, i brought up several things that seem inconsistent with the question format matching things like a case like mine, or progressive course, higher severity levels than very mild, the role of restorative sleep, permanent worsening, and more.
to me, those are /essential/ attributes of the disease for at least some pwme. it doesn't even mention being knocked out for weeks. that is what francis collins was so expressively amazed by in an interview with charlie rose. perhaps collins couludn't imagine worse than weeks.
due to the exponentially-worse levels thing or the match/nuke thing, or othr resasons, it is infamously difficult for even pwme to accurately imagine worse severity than their own, or one's patients if one is a doctor. i'd like pwme and biomedicine to get past that. oh, and society.
the above seems related to the "the order of magnitude is off" problem which i have a thread on someplace with i think those words in the title.
the above also implies my intolerances conception of pem [viz. pem/pene is not only caused by cognitive, physical, or emotional exertion, and not only exertion as normally defined, but also oi, mold, and ANY impact to the system].
also, maybe most pwme recvover by time alone. but even if so, i am not sure that that is always the case. it could be e.g. in large part sleep + lack of further pem. [incidentally, i want a positive english word for lack of iimpact tot he system. like peace is sorta lack of war or noise.]
[as an aside, i usually cannot view any white-background pictures; text transcriptions/ocr of them would be useful to me as a forum member. they would also allow search. otoh it might be hard to transcribe.]
ETA: maybe francis collins was amazed by the duration of hte disease being weeks rather than by pem being weeks. either way.
