Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

[OrganicChilli]

My partner who is also a pwME has episodes where she falls asleep very quickly in the daytime that do not feel to her like the regular feeling of getting sleepy and taking a nap.

I get daytime sleepiness, too. The important thing is that I HAVE to fall asleep to recover. If I just rest for hours on end, the sleepiness doesn't go away. But if I fall asleep, and usually I only fall asleep for 5 minutes, I wake up and it's like my system has been reset and the sleepiness is gone. Unless I've really overdone it just short of PEM then the sleepiness persists throughout the day.

 

[duncan]

I have episodes of temporary paralysis when I crash, and I know others do too

Brings to mind channelopathies and periodic paralysis variants.

 

[V.R.T.]

Brings to mind channelopathies and periodic paralysis variants.

I don't really know much about either

 

[V.R.T.]

I get daytime sleepiness, too. The important thing is that I HAVE to fall asleep to recover. If I just rest for hours on end, the sleepiness doesn't go away. But if I fall asleep, and usually I only fall asleep for 5 minutes, I wake up and it's like my system has been reset and the sleepiness is gone. Unless I've really overdone it just short of PEM then the sleepiness persists throughout the day.

Hers she says feels like she's been drugged. Like it doesn’t feel like normal falling asleep. And she sleeps for a couple of hours typically when it happens.

It's been the case since I met her, 2 years before we got ME but she had had post viral illness before then after glandular fever.

 

[duncan]

I don't really know much about either

There was a school of thought out of Australia that suggested ME/CFS was in at least some cases a channelopathy, or involved a channelopathy.

I am struggling so excuse this layperson's attempt to describe:
Channelopathies refer to ion channels in muscle cells that fail to one degree or another due to one of three elements being off (sodium, calcium or potassium.) The cells misfire and the result is abnormal weakness or even paralysis. The condition is broadly referred to as periodic paralysis.

Not much is known about it.

 

[rapidboson]

I am more and more thinking that there may be a close analogy between narcolepsy/cataplexy and ME/CFS as immunological processes.

FWIW baclofen and sodium oxybate are used in narcolepsy - and seem to improve my quality of sleep and restfulness to an extent as well.

Some S4ME posts regarding orexin antagonists and orexin in PASC

 

[jnmaciuch]

I am not sure T cell involvement in narcolepsy/cataplexy would be relevant to ME/CFS, iirc a Swiss group showed pretty definitively that it is mediated by antigen-specific T cells that target orexin-producing neurons. The damage to that neuron cluster was also quite visible in neurological studies.

In general, every piece of evidence I’ve come across involving T cells in neurological disease has evidence of antigen specificity and detectable damage to a part of the brain. Other examples of location specificity of T cells are mediated by local interferon signaling calling the T cells there (eg psoriasis).

Perhaps orexin is involved in ME/CFS in some way but I’m skeptical that it would be T cell mediated like in narcolepsy.

 

[Jonathan Edwards]

Perhaps orexin is involved in ME/CFS in some way but I’m skeptical that it would be T cell mediated like in narcolepsy.

For sure it is not gong to be the same error of T cells recognising an orexin-related antigen but that does not stop there being another error making use of the same window in the brain's exclusion of T cells.

My reading of the literature just this last week suggests that despite claims it is not clear that anyone has nailed a specific antigen though.