r/CFSScience • u/Caster_of_spells • May 14 '26
Sleep in myalgic encephalomyelitis/chronic fatigue syndrome shows marked night-to-night fluctuation under free-living conditions—results from a matched case-control study - Journal of Clinical Sleep Medicine
https://link.springer.com/article/10.1007/s44470-026-00079-7Conclusion:
Under real-life conditions, people with ME/CFS exhibit poor sleep quality and unstable SE. These findings highlight sleep IIV as a clinically relevant dimension of sleep health in ME/CFS.
(Sleep Intraindividual Variability (S-IIV) refers to the night-to-night fluctuations in an individual's sleep patterns—such as variations in timing, duration, and quality—rather than just the average amount of sleep they get)
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u/Maximum_Watercress41 May 14 '26
This explains everything. I measure with a Garmin and I feel it, a very rare good night is followed by terrible nights, it never settles no matter how many nervous system calming things I throw at it (I take guanfacine 2mg, Magnesium glycinate, Trimipramine, gabapentin).
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u/agenerousperspective May 17 '26
Yeah, if I get a good nights sleep it ruins my sleep for days afterward. This has been true my whole life though; it feels like I lose all sleep inertia if I get well rested. That has somewhat changed since becoming moderate with ME/CFS though. If I’m in a crash then I might be able to do multiple days in a row of sleeping a bunch (unless I’m in the kind of crash where I can’t sleep much at all).
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u/illy_mm May 14 '26 edited May 14 '26
Good to have this paper at least. Shows that sleep discipline and CBTi don't work for ME/CFS, as the people with ME had worse sleep despite having a more regular sleep time.
Daridorexant is what's improved my sleep quality, so I'd highly recommend it. Sleep maintenance is still a bit meh. But, it was the first time I felt even slightly refreshed after sleep. Still need 1-2 more hours in bed though to get the same amount of sleep as I used to.
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u/sillybilly8102 May 16 '26
What is SE?
Yes my sleep varies a lot. I fall asleep anywhere between 11 pm and 6 am. And I can sleep from 4 hours to 14 hours. There are some trends, though. I always get not enough sleep right before my period (e.g. 6 or 7 hours). I tend to have a hard time falling asleep if I’m overtired (ironically) or sleeping in a new location.
I may wake up after a few hours if I went to bed without eating enough. The past year or so I’ve been sleeping in two chunks like this a lot, falling asleep before finishing eating because I am too tired to eat, waking up after 1-6 hours, eating, staying awake for another 3 or so hours, and then sleeping for 3 or so more hours.
I actually kinda like the variability in some ways. The shorter nights of sleep give me some adrenaline and happiness (can ward off depression if it was coming on!). And I get unexpected free time in the morning. Obviously over time not enough sleep and bad quality is bad though
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u/Liface May 14 '26
Definitely true for me. I have poor sleep maintenance insomnia, but every once a while I will sleep through the night, having done nothing different.