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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation® Canada

Pioneering Research on Sleep Disturbances in ME/CFS & Long COVID

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 & OMFCA 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. 


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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