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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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Extended Big Data Study in Families

STUDY AIM
Beginning in 2016, the aim of this study was to extend the Severely ill Patient Study (SIPS) and conduct a comprehensive “Big Data” analysis on ME/CFS patients and their families. 

LEAD INVESTIGATORS
  • Fereshteh K. Jahaniani, PhD
  • Michael P. Snyder, PhD
  • Ronald W. Davis, PhD
UPDATES AND POTENTIAL
  • Published a paper on the characteristics of immune cells in ME/CFS (read here).
  • Continuing to collect longitudinal samples from patients, their unaffected family members and healthy volunteers.
  • Functional studies such as immunostaining, western blot, and RTCPR/PCR, in progress.
  • DNA and RNA extraction for whole genome, transcriptome, and DNA methylation studies in progress.
  • Two manuscripts under preparation on ME/CFS autoantibody profiling and ME/CFS plasma proteomics and cytokine landscape, which are aimed to be published in 2023.

STUDY HYPOTHESIS AND DESCRIPTION

In 2016, Fereshteh Jahanbani collaborated with Ron Davis and Mike Snyder to launch a study with the aim of deepening our understanding of how genetic and epigenetic variations impact our health, including our susceptibility to complex diseases such as ME/CFS and related comorbidities and multimorbidities.

The study was designed with the rationale that using unaffected family members as a control group would enable researchers to identify genetic and environmental risk factors that are associated with disease development, while longitudinal multi omics profiling could help to identify biomarkers and therapeutic strategies.

 OBJECTIVES

A 2D rendering of a family

Use blood from each patient to compare patients to healthy relatives and examine:

  • Genome
  • Gene expression
  • Metabolomics
  • Proteomics
  • Cytokines
  • Microbiome
  • Autoantibodies

By comparing patients to healthy blood relatives, we are more likely to understand what genes cause or contribute to the development of ME/CFS. This data will also be integrated with the SIPS data.

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.