Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

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
  • Janet Mullington
  • Donna Felsenstein

Problems with sleep in ME/CFS is essential to understand and to begin to effectively treat or in the prevention of crashes. Previous studies, using technologies at the time, have failed to identify any specific sleep abnormalities. 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 in well characterized patients with ME/CFS.

STUDY HYPOTHESIS AND DESCRIPTION

In previous sleep studies using traditional methods and techniques, no specific sleep abnormalities have been seen with a single exception highly investigative methods. This proposal intends 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.

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, if not likely, 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. From the perspective of symptoms and signs as well as a suggestive prior study evaluating spectral coherence data, the possibility is worthy to explore.

OBJECTIVES

  • Obtain human studies approval and technology transfer approval to examine many of previously recorded sleep studies in a cohort of ME/CFS patients.
  • We will simultaneously develop methods to measure a critical protein in brain fluid that is a key regulator of sleep.
  • Based upon our pilot studies, we will study a small cohort of ME/CFS patients using the most advanced techniques available to probe any suspected abnormalities in deep brain function.
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

What are the advantages of giving from your Donor Advised Fund (DAF)?

  • Your gifts to your donor advised fund entitle you to an immediate income tax deduction at the time of contribution.
  • You avoid capital gains tax on appreciated assets you place in your donor advised fund.
  • Your fund’s investment gains accumulate tax free.
  • Funds are distributed to Open Medicine Foundation in your name and immediately put to use to support our worldwide research efforts.

How do I make a donation through my DAF?

Just click on the DAF widget below. It is simple and convenient to find your fund among the over 900 funds in our system.

Still can’t find your fund? 

  • Request a grant distribution through your Donor Advised Fund sponsor
  • Be sure to use OMF’s EIN #26-4712664
  • You can also designate OMF as a beneficiary for your Donor Advised Fund
  • Questions? Give us a call at 650-242-8669