OMF Canada Triple Giving November logo

 TRIPLE YOUR IMPACT during Triple Giving November | All Donations to OMFCA are TRIPLED through December 2

Donate now for a 3x match
Main Menu
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation® Canada
Donate
Sign Up

Sleep Disturbance in ME/CFS and Long COVID

Study AIM

This project will investigate sleep disturbance in ME/CFS and Long COVID through a retrospective evaluation of PSG data and a prospective sleep study.

LEAD INVESTIGATORS
  • Wenzhong Xiao, PhD
  • Janet Mullington, PhD
  • Donna Felsenstein, MD
Updates and Potential
  • Preliminary examination of the recordings shows increased fragmentation and sleep spindle deficiency in patients. The preliminary results were presented at the 2024 Stanford ME/CFS Workshop and 2025 PLRF Webinar.
  • The retrospective data will be compared with the ongoing sleep study of ME/CFS and Long COVID patients.
  • A manuscript comparing sleep patterns of ME/CFS, Long COVID, and healthy controls.
STUDY HYPOTHESIS AND DESCRIPTION

Problems with sleep in ME/CFS is essential to understand and effectively treat or prevent crashes. Previous studies, using technologies available at the time, have failed to identify any specific sleep abnormalities in ME/CFS. Over the past decade, improved technologies and understanding of sleep physiology has become available. Furthermore, more specific treatments and approaches have become available for usage in sleep disorders. We propose to use these current state-of-the-art technologies and understandings to reevaluate sleep studies that have been conducted in the past two years and performed at the MGH Neurology Sleep Medicine Laboratory in well characterized patients with ME/CFS.

Furthermore, in previously collected brain fluid samples, we will develop techniques to measure orexin, which is an important protein that control sleep boundary states.

Lastly, we will conduct a prospective study in ME/CFS and Long COVID with our sleep colleagues at the Beth Israel Deaconess Medical Center Clinical Research Center using the most advanced technologies available to better identify and understand any possible abnormalities in high frequency signals in the deep brain function, in addition to immune function and other components of sleep disturbance.

OBJECTIVES

Woman undergoing a sleep test.

  • Identify 20 ME/CFS patients; obtain Polysomnography (PSG) raw data recordings from the MGH Neurology Sleep Medicine Laboratory and EHR information to correlate demographic, medical, medication, and other relevant data.
  • In separate patients, evaluate prior collected cerebral spinal fluid (CSF) for orexin and multiple neuroinflammatory biomarkers in high throughput proteomics to determine feasibility to include these measures in future studies.
  • Conduct a prospective, in-depth sleep study on patients with ME/CFS and Long COVID, investigating:
    • sleep-circadian dysfunction
    • immune function
    • brain electrical activity
    • mechanisms of state-boundary control and neurodegenerative diseases

Consent management

Consent Preferences

Data Subject Access Request (DSAR) Form 

Microvesicles and viral sequencing
Microvesicles are a type of extracellular vesicle that is released from the cell membrane. Vesicles are small, fluid-filled sacs or vacuoles within the body. Sequencing is a technique used to determine the exact sequence of bases (A, C, G, and T) in a DNA (or viral) molecule.
NMR Metabolomics
NMR (Nuclear Magnetic Resonance) is an instrument/tool used to perform metabolic studies, metabolic profiling, and metabolomics in biofluids and tissues for more than 40 years using magnetic fields. There is a very close connection between metabolic measurements and NMR. This connection has flourished because of NMR’s many unique strengths for characterizing complex mixtures’ chemical composition.
Proteomics
The large-scale study of proteins, which are large, complex molecules that are required for structure, function, and regulation of the human body's tissues and organs.
Autoantibodies
Antibodies that react with self-molecules and that occur in healthy individuals and are referred to as natural antibodies or autoantibodies.
Extracellular DNA for viral reactivation and Mitochondrial DNA
exDNA (extracellular DNA), exDNA is often secreted actively and is used to perform several tasks, thereby offering an attractive target or tool for biotechnological, medical, environmental, and general microbiological applications. Viruses are intracellular parasites that rely to a significant extent on the host cell for replication. Viral reactivation occurs when an active replication of the viral genome results in a lytic (degradation of the cell) infection characterized by the release of new progeny (descendant) virus particles.
Immune cell profiling
The immune system has many important regulatory roles in disease development and progression. Given the emergence of effective immune therapies, reliable predictors of response are needed. Immune cell profiling determines response by evaluating immune cell populations from treated and untreated samples. For our purposes, we will evaluate the white blood cell response to the viral infection using a process called “Cytof.”
Leukocyte Genomics
A leukocyte is a colorless cell circulating in the blood and body fluids and is involved in counteracting foreign substances and disease. A genome is all genetic material of an organism. Genomics is a biology field focusing on the structure, function, evolution, mapping, and editing of genomes. Therefore, leukocyte genomics is the study of all genetic material of leukocytes.
Metabolomics
Metabolomics is a way to study metabolism – that is, through measuring amounts of the metabolites (small molecules) produced by our bodies as we convert food into energy and other molecules that our cells need to survive. Metabolomics technology is ‘large-scale,’ meaning that several thousand metabolites can be measured from a single sample of e.g., blood or urine.
Micro RNA
Cells use Micro RNA to control whether a particular gene is making too much, too little or the normal amount of its protein at a particular time.