Significance of unrefreshing sleep in IOM diagnostic guidelines

It's hard to comment on a specific case, but in other fatiguing conditions sleep usually almost completely ameliorates the fatigue, at least temporarily. Like in MS, the fatigue gradually gets worse over the course of the day, but then sleep ameliorates it: . So someone could find sleep refreshing in ME, but if it still doesn't substantially ameliorate their symptoms, that seems consistent with ME.
 
Sleep including naps does take the edge off, there is usually some small restorative value, or at least a halt to feeling worse and worse after lack of rest. However in a crash I wake up feeling like I have been hit by a truck most of the time. I also almost never have any energy on waking, but rarely (depending on rest, diet, and who knows what else) I will wake up with less than three minutes of stored muscle energy. I conserve those few minutes and make them last, or do a chore, or make breakfast faster than usual.

I would would never, ever, describe my waking up as feeling refreshed.
 
For me unrefreshing sleep means waking up in the morning with very little energy. I feel like I've had a good nights sleep and I'm not tired or want to go back to sleep. I'm ready to get up and start my day, however, my energy level doesn't get refreshed while sleeping and I start of my day exhausted before I've even done anything.
 
I think if your unrefreshing sleep were to return without careful pacing, meds, etc, then you still have that symptom. It's just controlled, rather than removed/resolved.

For me, my sleep is okay sometimes, and I can get good stretches of a few days at a time where I sleep well, but it's like my body wants to move back to a state where sleep is unrefreshing, so I have to constantly adjust and tweak what I'm doing. If I didn't do that, and didn't take any meds, my sleep would be uniformly awful again.

So I consider myself to still have that symptom even if there's a portion of the time (much less than half) when it's not so much of an issue. Even if I had good sleep 100% of the time, I would still think I had the symptom if I knew it would return without my efforts to manage it.

I think of it like migraines. If you take prophylactics, you might not get them anymore. But you wouldn't say you were cured of migraines and you'll probably always be a migraineur.

But YMMV, of course.
 
If we contrast it with refreshing sleep of a healthy person who perhaps has a period of stress or more than usual activity, they are restored back to feeling fully healthy after a night or a few nights sleep, and in normal activity times they feel tired when they go to bed, and refreshed when they wake, and ready for another day of normal or extra activity, provided they have had enough sleep.

For me, since I got ME, I have never woken in the morning feeling healthy, or that sleep has refreshed me. It may reduce my sleepy tiredness, but I still feel ill, in pain all over, drained of energy and my limbs feeling heavy and my brain slow. I never feel refreshed.
 
Trish said:
If we contrast it with refreshing sleep of a healthy person who perhaps has a period of stress or more than usual activity, they are restored back to feeling fully healthy after a night or a few nights sleep, and in normal activity times they feel tired when they go to bed, and refreshed when they wake, and ready for another day of normal or extra activity, provided they have had enough sleep.

For me, since I got ME, I have never woken in the morning feeling healthy, or that sleep has refreshed me. It may reduce my sleepy tiredness, but I still feel ill, in pain all over, drained of energy and my limbs feeling heavy and my brain slow. I never feel refreshed.
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This too. My 'good sleep' is quite a bit worse than a healthy person's. Feeling refreshed has probably happened fewer than five times in the last year, and that's likely an overestimate.
 
NelliePledge said:
I always feel at my worst on waking.
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For more than a decade after onset, I felt considerably more exhausted upon waking than when I went to bed. It may have had something to do with sleep apnea. Specifically, "central sleep apnea," which may result in an irregular breathing pattern due a problem with the brain responding inappropriately to changing carbon dioxide levels in the blood. https://www.sleepassociation.org/sleep-apnea/central-sleep-apnea

I'm not sure if ME caused this, or if ME just made it worse, but I had no noticeable issue with it prior to ME.
 
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Trish said:
If we contrast it with refreshing sleep of a healthy person who perhaps has a period of stress or more than usual activity, they are restored back to feeling fully healthy after a night or a few nights sleep, and in normal activity times they feel tired when they go to bed, and refreshed when they wake, and ready for another day of normal or extra activity, provided they have had enough sleep.

For me, since I got ME, I have never woken in the morning feeling healthy, or that sleep has refreshed me. It may reduce my sleepy tiredness, but I still feel ill, in pain all over, drained of energy and my limbs feeling heavy and my brain slow. I never feel refreshed.
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Same experience here for ever so long. The night is awful in the sense that it is not restoring anything, and way worse morning than in bed the night before. As a main rule. The dynamics morning is improving slightly and slowly during the day, in general. Can add that sleep hygiene is optimal.

What I find fascinating, is that I very seldom is tired the “normal way”, as yawning, that kind of tired. Almost never yawn!? But never ever restored?

Sleep is some kind of mystery, and it plays a major part. It’s like starting all over again every single morning, never restoring. It may be some kind of sleep that happens during night, but it is never of the restorative type.
 
Pre ME after a good night's sleep I would wake up feeling good and raring to go.

Now, it seems the more sound my sleep, the worse I feel.

Some of that might be due to fluctuating thyroid issues - when I need to increase the dose I sleep much more soundly and for longer. Naturally, I will feel unwell if the thyroid meds need adjusting.

Eveb when the thyroid levels are optimal for me, the longer or more soundly I sleep the more awful I will feel on waking.
 
Subtropical Island said:
(Mods please move if there is a better place for this question)

Given that in the IOM diagnostic unrefreshing sleep must be present (correct me if I misinterpret) for a diagnosis of ME/CFS, if that one criterion is under control (no longer present/significantly true) does that mean the patient does not have ME/CFS by that IOM standard?
If so, what does that mean? Cured? Remission? Never was? Is there a differential diagnosis to consider for that case?
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Several years late but I came here wondering the same thing; I am housebound, with PEM (though no flu-like symptoms with PEM), OI and cognitive issues, but wake up most mornings with my brain feeling good, and with no physical feelings of fatigue, weakness or malaise. In the first year or so I did wake up feeling like someone had hit me over the head but that went away as my cognitive issues improved.

Relatedly, I am confused about why OI and cognitive issues are in the IOM diagnostic criteria; both are relatively common in other conditions, and PEM uniquely characterises ME/CFS?

I also don't meet CCC bc of no pain, but that seems common. I am confused by the long list of additional categories in CCC also, again for similar reasons as above.

The various confusing criteria leads me to often say that I have Long Covid with OI and PEM, rather than directly say I have ME/CFS.
 
I find the term unrefreshing completely unscientific and ambiguous.

If I don't understand a word I try to break it down. Unrefreshing must be the opposite of refreshing. Refresh must be the process being described. What does that mean for a person? Should I feel "fresh"? Again? What would that feel like? Does it have any validated ways of discovering it or any measurable correlates?

I think it's a shit part of the criteria. Maybe I'm just in a bad mood, I woke up feeling terrible!!
 
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