Yes, I think what I'm trying to get at (in a muddled way) is whether poor sleep in ME/CFS is primary to the disease, not a secondary consequence of symptoms or treatment. The latter might sometimes be the case in other chronic diseases.
I think if you are making the point that surveys aren’t differentiating those who have something which is probably ‘an ME problem’ (but hit called a sleep disorder by others because it meant they’d be awake for days then sleep for days and sleep at weird times etc) that is very specifically something to do with sleep (and to underline NoTHING to do with sleep training or behavioural as that quickly makes the ENTIRE illness and health hugely and permanently worse to an extreme level as all they do is deprived the windows of rest of sleep someone can get leaving them for weeks with no sleep which is so sxtremrly dangerous it makes me as angry as the term ‘psychologising’ playing down the aggressive slanderous made-up act of laypersons as if what they are doing is actually a form of psychology rather than misogyny - and that desperately needs a new term to describe how rude and obviously not harmless or kind that is).
Of course peoples sleep will also be affected by other factors as an illness with no PEM or effects that interfere with whatever bits of the system are doing this to those who have these sleep issues (and I know it’s very different to those who don’t as I’ve met enough who ‘feel better if..’ and just have to realise their me/cfs is utterly different to mine) such as pain etc.
And I think these need to be separated out clearly even tho there will be overlap because those who do have extreme shifting cycles related to PEM will find high pain etc happens with PEM because something caused both.
But there’s a difference between ‘didn’t sleep great’ but that being close to normal people with bad aches, and ‘I’m not getting to sleep until 14hrs after my normal sleep time if I’m lucky because I’m just awake even though I’m also exhausted’ .
And then even with those people there is also soecifucs within that it would be good to start unbundling. It’s as frustrating as people using brain fog when there is a massive difference between anomia but not ‘foggy’ and feeling like you can’t wake your brain that day or thinking you are speaking well but realising your words are in the wrong order (and as a background in psychology I know the source if these errors point to different things in the right school of psychology like cognitive or physical perception rather than nonsense clinical which is only looking at shortcuts to pathologies it only as a psych thing - very strange people don’t get it that other bits of psych do the ‘full/rest of the brain’ but that area has only a very specific angle).
Some of those ‘phenomena’ relate to the exertion/threhold/PEM type cycle and patterns and have specific timings and the being awake when your body needs to sleep then finally knocked out as your body is five days exhausted etc feels relevant to more than just calling it a ‘needs sleeping tablets’ definitely is made worse by sleep training etc and these are important clues.
But if there’s a big segment who gets none of these then it’s hard without the language differentiating us out because they naturally try to relate but you get it isn’t that they just got a milder of different form of what you are trying to describe on some things. But then on others like PEM maybe they have - I don’t know.
Of course goodness knows how to do said survey as they are always harder than you think but it’s always a process of draft redraft completely having learned lessons from trying it that way or needing a filter to separate off factors that need to be controlled etc (by decision trees) etc
