Open (Boston, Massachusetts) Characterizing Non-Restorative Sleep in Post-Viral Disease to Advance Intervention Innovations (ME/CFS, LC, Healthies)

https://www.omf.ngo/mecfs-sleep-disturbance-study/

From the Desk of Janet M. Mullington, Ph.D.
Professor of Neurology, Harvard Medical School and
Beth Israel Deaconess Medical Center

Open Medicine Foundation (OMF) has funded over 50 research studies investigating core issues central to ME/CFS. Additionally, this year, we are grateful to have received funding from the Patient Led Research Collaborative for a variety of Long COVID studies that focus on overlapping ME/CFS symptoms that so many in our OMF community can relate to. Your support of May Momentum makes our full research catalog possible. Take a look at one of the pioneering projects that exemplifies the innovative, patient-centric research OMF is known for.

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Characterizing Non-Restorative Sleep in Post-Viral Disease to Advance Intervention Innovations
Research has shown that even in healthy sleepers, repetitive sleep disturbance leads to circadian, hormonal and immune system disruption. Moreover, disturbed sleep is consistently one of the most debilitating symptoms in Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID.

Since we know that sleep is important for immune function, we hypothesized that disturbed sleep may slow or prevent the return to health following infection, and may even lead to worsening of symptoms or the emergence of new symptoms in ME/CFS and Long COVID. This research seeks to first investigate and characterize the pathobiology of sleep disturbance in ME/CFS and Long COVID. It is our hope that characterizing the sleep disturbance will lead to better understanding of the mechanisms and root causes of post-viral diseases, and provide a path to prevention and cure.

The study will measure a variety of factors across multiple systems that affect sleep quality in patients with ME/CFS, Long COVID, and healthy sleepers.

We will investigate:

• Sleep-circadian hormonal markers – we will measure hormones that are involved in circadian and sleep/wake cycle regulation, including melatonin and cortisol (and its precursor ACTH). These hormones will be measured through wake and sleep, hourly, throughout the 24-hour day.

• We will investigate Immune regulatory profiles – in blood, to determine if they show a 24-hour pattern of deficiency, particularly related to immune functions that are involved with dampening down an inflammatory response.

• We will investigate Brain electrical activity including sleep spindle activity, for biomarkers and signatures of non-restorative sleep in ME/CFS and Long COVID.

• We will investigate State-boundary control. Orexin is a peptide produced in the brain by orexin neurons and this peptide helps to regulate state boundary control.

We hypothesize that virally induced impairment of central nervous system sleep regulatory centers causes sleep to become fragmented and deficient, resulting in the symptom of unrefreshing, non-restorative sleep. The goal of this research will be to characterize, taking a multi-systems approach, several features of sleep regulation in ME/CFS, Long COVID, and in age and sex matched healthy sleep controls.

We look forward to sharing the results of this work with you!



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Links in image:
https://www.omf.ngo/mecfs-sleep-disturbance-study/
astokes1 at bidmc.harvard.edu

 

I'm guessing that they won't actually listen to any ME subjects about sleep; they have preconceptions that they want to find supporting evidence for. The quality of my sleep doesn't seem to affect my ME symptoms. Nights when I get longer/better sleep don't make me feel "more restored"; in fact they usually make me feel worse when I awaken. Nights of insomnia don't make my ME symptoms worse either. In short, I see no correlation between my ME severity and my sleep.

Also, choosing to use healthy controls weakens the study. They need appropriately unhealthy non-ME, non-LC controls.

 

I sent her an email suggesting using unhealthy controls, and about how ME's "unrefreshing sleep" symptom might not be related to sleep. Will that change the study?

 

If they can get to the root cause of why some pwME experience severe insomnia that would be a great relief for many. I had a close friend who suffered severe insomnia from day one of post-infectious illness for 18 years.

I don't experience insomnia and getting refreshed sleep will not lessen or prevent PEM.

 

That's been my experience too. Sleep has been more of effect than a symptom or cause. I feel worse when I sleep better, not because of sleep, but because I sleep more when I'm sicker. Then again, there are patients reporting sleep disturbance as one of their symptoms and they may benefit from the study.

 

i have a progressive form of m.e. sleep strongly affects m.e., and m.e. affects sleep. poor sleep gravely risks never recovering to baseline.

what i mean by poor sleep includes not getting restorative sleep, by my definition below, and being disturbed when my body is not ready.

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i have had delayed or reversed phase sleep my whole life.

due to persecution and the "circadianist" structure of society, i fought it at the wake end by forcing myself, then found it was better for my health not to.

now, i find that fighting it at the sleep end and trying not to wake, with a lot of medicines, is better for my health at least in the medium term.

unlike before, getting to bed after astronomical twilight can be murder on the system.

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many medicines and supplements i take. the purpose is to get to sleep at all, to get back to sleep or at worst rest at each of many uro, to make uro less bad, and to get restorative sleep.

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--> what i mean by restorative is SLEEP THAT HEALS BY, IF IT WORKS, RETURNING TO OR TOWARD BASELINE. nothing else seems to really work. pem doesn't heal by itself so much as heal from the right kind of sleep.

the key thing: slowing or stopping progression by allowing body to recover from impact to the system (or perhaps worsening unrelated to known causes). i spend almost all of a 24h day resting or sleeping for this purpose or have to.

poor or interrupted sleep or waking are among the worst of impacts to the system that have made my m.e. progress. there are others such as mold. progression might occur even without impacts, but impacts gravely risk permanent harm.

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restorative sleep for me is a completely unrelated thing to refreshing sleep. restorative sleep refers to healing from pem or similar.

 

Good to see they're looking broadly at non-restorative sleep and sleep disturbance, not just that mysterious 'unrefreshing sleep', too often there's a gap between patient speak and clinician speak.

Patient speak: unrefreshing sleep = any sort of sleep problem from waking up feeling drugged after 14 hours sleep to insomnia or day-night reversal, and just to add to the confusion, the same pwME can experience different sleep problems at different times yet call them all 'unrefreshing sleep'

Clinician speak: unrefreshing sleep = pwME sleep lots but don't feel better for it

So it's promising that this study is looking at a range of potentially dysregulated sleep features. And no mention of sleep hygiene either, yay!

I think in this particular context using healthy controls makes sense. They're looking to see if some very specific parts of the sleep mechanism are broken. By definition that means comparing to HC. If they find some broken mechanism/s, at that stage it would make sense to use disease controls to check how disease-specific the findings are. Although, depending on the findings, that may already become obvious from a much cheaper literature review if the same dysregulation has been documented in other diseases previously.

Granted, theoretically there could be an extra disease control arm from the get-go but that would absorb more funding which might have been better spent elsewhere esp if nothing is found or if a simple literature review can settle the matter of specificity. It could also slow the recruitment process, delaying results. I wonder why they're struggling to recruit pwME?

What does concern me though is the small n. I hope it won't be another one of those tiny studies that just end up with a few inconclusive hints nobody bothers following up on

 

Even mild sleep deprivation lowers my injury threshold and deterioration threshold and has caused many permanent deteriorations of my condition, so I think it's worth studying.