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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
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Crash-Course: Studying PEM/flares in ME/CFS, PTLDS, Long COVID

Study Aim

The study will compare biological markers during mild symptoms and flare/PEM events in individuals with ME/CFS, alongside PTLDS and Long COVID patients, using finger-prick blood samples and continuous data from wearable sensors to understand symptom variability.

Investigators

  • Linda Lan, PhD
  • Yue Wu, PhD
  • Jessi Li
  • Longsha, Liu
  • Jaime Seltzer
  • Michael Snyder, PhD
  • Christopher Armstrong, PhD

Updates and Potential

Recruitment ongoing.

Work has begun on data collection from biofluid samples.

FitBit data and symptom data being assessed.

Beginning some analysis of early data has identified hemodynamic data differences in all patients on an average day vs a crash/flare day.

Successfully attracted internal funding from Stanford University.

STUDY HYPOTHESIS AND DESCRIPTION

In our study, instead of just comparing people with ME/CFS to those who are healthy or have other diseases, we’re taking a different approach. We’re looking at the same ME/CFS patients at different times: when their symptoms are mild and when they have a flare-up, which is a sudden worsening of symptoms often called post-exertional malaise (PEM). This method helps us see how symptoms change over time in the same person.

Additionally, we’re comparing these patterns with those in people who have Post-Treatment Lyme Disease Syndrome (PTLDS) and Long COVID, to understand if flare-ups are similar across these conditions.

Participants in the study will provide small blood samples using a finger-prick method at various times. We’ll need samples from seven normal days and seven days during a flare-up, collected over about three months. During the study, participants will also use wearable devices like FitBit and apps to track their symptoms, providing us with continuous data.

We will analyze the blood samples for hundreds of biological markers to try to find patterns or triggers related to the flare-ups. This detailed tracking and comparison may help us better understand and address the fluctuations in symptoms seen in ME/CFS and related conditions.

OBJECTIVES

a close-up of a finger with a drop of blood on it, against a white background.

  1. Identify biological patterns that correspond to ME/CFS, PTLDS, and Long COVID symptoms.
  2. Characterize biological differences that occur between baseline and flare/PEM.
  3. Analyze the continuous heart rate data provided by FitBit to look at differences between metabolism and hemodynamic data.
  4. Cluster patients based on similar biology-symptom dynamics.

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.