The Implications and Predictability of Sleep Reversal for People with [ME/CFS]: A Machine Learning Approach, 2025, Dietrich, Jason et al

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The Implications and Predictability of Sleep Reversal for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Machine Learning Approach

Meghan P. Dietrich, Raam Pravin, Jacob Furst, Leonard A. Jason

Background/Objectives:
Impaired sleep is one of the core symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), yet the mechanisms and impact of sleep-related issues are poorly understood. Sleep dysfunctions for patients with ME/CFS include frequent napping, difficulties falling asleep, waking up early, and sleep reversal patterns (e.g., sleeping throughout the day and staying awake throughout the night). The current study focuses on sleep reversal for patients with ME/CFS.

Methods
We explored the symptoms and functional impairment of those with and without sleep reversal by analyzing the responses of a large international sample (N = 2313) using the DePaul Symptom Questionnaire (DSQ) and Medical Outcomes Study 36-item Short-Form Health Survey (SF-36).

Results
We found that those in our Sleep Reversal group (N = 327) compared to those without sleep reversal (N = 1986) reported higher symptom burden for 53 out of 54 DSQ symptoms and greater impairments for all six SF-36 subscales. The most accurate predictors of sleep reversal included age (p < 0.05), body mass index (p < 0.05), eleven DSQ symptoms (p < 0.01), and two SF-36 subscales (p < 0.01).

Conclusions
These features provide clues regarding some of the possible pathophysiological underpinnings of sleep reversal among those with ME/CFS.

Link | PDF (Healthcare) [Open Access]
 
The Sleep Reversal group was significantly younger and had a higher average BMI. The Sleep Reversal group also had a smaller proportion of participants who were married or living with a partner, a slightly higher proportion of participants who were separated, widowed, or divorced, and a higher proportion of participants who never married compared to the No Sleep Reversal group. The Sleep Reversal group also had a smaller proportion of participants who were retired, working part-time, or working full-time, and a higher proportion of those who were unemployed than the No Sleep Reversal group.
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It reads to me like the sleep reversal group are just sicker. It might not have anything to do with the specific symptoms.

But the age is notable. Maybe you have a higher chance of sleep issues if you have a higher chance of getting ME/CFS at a young age? The lower marriage/partner numbers suggest that the sleep reversal group got sicker early in life, before they had the chance to marry or find a long term partner.
 
Maybe just younger, or younger onset as you say @Utsikt and that would obviously impact marriage and never working.

I find the age one interesting, as I had significant sleep issues and I guess sleep reversal when younger, linked to depression. While much less so with ME/CFS which (some sleep issues obviously but it’s more the impact than the extreme level of sleep issues I had then).

So is there more a general link between sleep issues and age? People say, late teens or early twenties are more likely to suffer more extreme changes linked to different conditions? Maybe once they have started they are difficult to get out of too?
 
Amw66 said:
It would be interesting for a comparison with the corresponding younger age group.in the general population.
Sleep issues are common . Sleep reversal less so ,but may be worth comparing to see how different it is.
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I agree. I think if you had a bunch of young people who did not have to get up in the morning to go to school, university or work, many of them would have majorly shifted sleep-wake patterns.

Abstract said:
Impaired sleep is one of the core symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), yet the mechanisms and impact of sleep-related issues are poorly understood. Sleep dysfunctions for patients with ME/CFS include frequent napping, difficulties falling asleep, waking up early, and sleep reversal patterns (e.g., sleeping throughout the day and staying awake throughout the night). The current study focuses on sleep reversal for patients with ME/CFS.
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I think 'unrefreshing sleep' (waking up in the morning feeling rubbish) is actually the core symptom - that's not the same as 'impaired sleep' as described in that paragraph. I think BPS people like to extend out that symptom of unrefreshing sleep to all sorts of things, so that they can suggest we just need instruction in sleep hygiene and learning not to ruminate - so that's an additional reason to resist that conflation.

I wonder how much of the sleep dysfunction is just the result of lifestyle changes (e.g. not having to wake early to get children off to school and get to work), stress related to the impacts of the illness and, importantly, pain.

I do think hypersomnia, sleeping for very long hours, is a particular feature of ME/CFS, common in young people. My theory is that it is common in periods of rapid physical growth. It would be great to see some study of that phenomenon.
 
Hutan said:
I think 'unrefreshing sleep' (waking up in the morning feeling rubbish) is actually the core symptom
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I do wish we had better language to describe the sleep problems in ME/CFS. Ok, sure, sleep is unrefreshing; I feel ghastly for the first few hours after my second sleep. But it doesn't capture the way the biology of sleep in this condition is just not working properly. I get it all: sleep reversal, insomnia, waking too early (I almost always wake at the five hour mark; have been sleeping in two "sleeps" for well over a decade now), hypersomnia when my body suddenly realizes I've gone several days with 5 hours or less. It's as if there are multiple diurnal processes that all need to be in sync for sleep to happen (temperature, urination, bowel movements, etc.). Or that some receptor(s) needs to click with some other receptor for sleep to happen but is just faulty for us.
 
Michelle said:
It's as if there are multiple diurnal processes that all need to be in sync for sleep to happen (temperature, urination, bowel movements, etc.).
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That's a good point.

My sleep is normally pretty good; I normally wake up almost exactly at the same time each day. PEM stuffs things up for me though, through pain delaying sleep onset or waking me up, and through fluid dysregulation (frequent urination).

I guess that's why I have the views I do - although my son has much more dysregulated sleep patterns. Assuming I have ME/CFS, I don't think sleep issues (other than 'unrefreshing sleep') are a necessary part of ME/CFS.
 
Hutan said:
Assuming I have ME/CFS, I don't think sleep issues (other than 'unrefreshing sleep') are a necessary part of ME/CFS.
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Agreed. It takes me forever to fall asleep, but I think that's because I'm inactive all day. Also, it's always taken me quite some time to fall asleep and ME/CFS just adds another hour. I don't think that really counts as sleep disturbance. I also wake up refreshed unless I have PEM that day.
 
I have had sleep issues for a while before me/cfs, but they do feel very different of what I consider me/cfs related sleep issues. "Normal" sleep issues were mostly that I struggled to calm down after a busy day, and woke up sleep deprived which caused a clear pattern of sleeping very little -> sleeping a lot in weekends and daytime sleepiness etc.

With me/cfs, its very clear that I get sleep issues as a symptom of PEM. I get it all, insomnia, hypersomnia, waking up early or fully sleeping trough everything etc. When PEM is really bad I sometimes fall in a pattern of sleeping a few hours with a few hours of awake time in between several times a "day". It just all becomes one big mess, and I am incapable of regulating my sleep patterns during those periods. I am not fully bedbound or very severe during PEM.

Notably, I am often able to revert back to my usual sleeping patterns that I had before me/cfs when im out of PEM.
It is a completely different experience for me, and I doubt caused by something like pain, psychological effects or inactivity in my case.
 
In my experience, I find the 'sleep reversal' is due to a mismatch in the amount of waking versus sleeping hours that the body demands. It means the sleep-wake cycle becomes out of sync with the 24 hour cycle. Napping can increase this risk too but sometimes you just must nap.
 
When I had to work, I had to get up. Sleep or no sleep. I used to have weeks where I’d come home and go to bed, get 8 hours then be up at 3am, ready to face the day! Or I’d be “tired and wired” getting up late and chugging coffee. I have been known to take the afternoon off because I couldn’t stay awake.

After I stopped working I didn’t have to try and it was much less hassle.

What is this review even for? Might as well add in hair/eye colour of the participants and see if we can’t find a correlation with that.
 
One of the very few useful management tools for me is not having to adhere to a fixed sleep cycle. Contrary to the psycho-behavioural view of 'sleep hygiene', being able to rest/nap/sleep whenever I need to is pretty helpful – indeed necessary.

My sleep pattern is fairly stable now days and of better quality, partly due to low dose Amitriptyline (10mg daily), but partly due to not having to rigidly follow conventional sleep practices/cycles. Has both physical and mental benefits. It does have limits though, and is no panacea.

If you want a good example of how disconnected the views of the psycho-behavioural club are from our reality, just look at their advice on rest/naps/sleep for ME/CFS.
 
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