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Sleep Disturbance in ME/CFS

We intend to examine multiple 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.

  • Wenzhong Xiao, PhD
  • Janet Mullington, PhD
  • Donna Felsenstein, MD
  • IRB approval received for a pilot study of 24 or more sleep records.
  • Intent is to quantify sleep fragmentation seen in the sleep studies of the severely ill patient study (SIPS)
  • Examine fast frequencies of sleep/wakefulness regarding predominance and relationship to objective neurobehavioral output (psychomotor vigilance) fatigue sensitive measures
  • Evaluation through the electronic health record of ~100 potential study subjects completed, and available data retrieved from MGH sleep lab.
  • Preliminary examination of the recordings shows increased fragmentation in patients.
  • Data will be compared with ongoing study of long COVID patients.

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 revaluate 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, in a pilot study, we will examine a small ME/CFS patient cohort 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. Prior reports, using older methods that are highly influenced by more superficial EEG signals from the brain cortex, have failed to identify any identifiable similarities to sleep disorders. However, excessive sleep fragmentation is seen. Deeper brain function, particularly as identified looking at higher frequency events, are possible, if not likely, to be identified as dysfunctional in some way in these patients. Based on ME/CFS symptoms and a suggestive prior study that evaluates spectral coherence data, the possibility of sleep disturbance is worth exploring.


  • 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.
  • Negotiate a Data Use Agreement (DUA) between MassGeneral Brigham (MGH) and BIDMC CRC to share data in collaboration.
  • 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.
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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