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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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SPOT ME: Serial Pediatric Omics Tracking for ME/CFS

STUDY AIM
This study seeks to understand pathological mechanisms of pediatric ME/CFS (13 to 18 years old), using case-control and longitudinal study design that meshes clinical measures and omics methods.
INVESTIGATORS
  • Natalie Thomas, PhD
  • Tracey Chau, PhD
  • David Fineberg, MBBS, FRACGP, DCH
  • Katherine Huang
  • Elisha Josev, PhD
  • Sarah Knight, PhD
  • Adam Scheinberg, FRACP, FAFRM, MMed(ClinEpi)
  • Paul Gooley, PhD
  • Christopher Armstrong, PhD
UPDATES AND POTENTIAL
  • IRB/clinical protocol completed and approved.
  • Recruitment has begun at the Royal Children’s Hospital in Melbourne and is ongoing. Recruitment ongoing and ending this year. Will require StudyME registry to help with final push.
  • Have expanded to include MRI study on the patients.
  • Protocol paper draft complete and submitted to BMJ Open.
  • Recruiting a PhD student currently to complete the data acquisition and analysis to occur over 2024-2025

STUDY HYPOTHESIS AND DESCRIPTION

Research on ME/CFS in teenagers is not very common, even though a lot of teens start showing symptoms of this disease. The goal of this research project is to collect detailed information from teenagers with ME/CFS during a single visit to a doctor. This visit will include an MRI scan, brain function tests, and collecting body fluids like blood or saliva. These samples will help scientists look at thousands of biological markers and check how well the mitochondria (energy-producing parts of cells) are working in these patients.

Additionally, the teens will get a kit to take home so they can collect more samples on their own. This will help us see what changes in their biological markers on days when they feel better compared to days when they feel worse.

This focus on teenagers is important because their ME/CFS often starts after the same kind of trigger, such as an infection by the EBV virus, and they are usually diagnosed early in the course of their illness. They also tend to have fewer other health issues compared to adults with ME/CFS. Understanding ME/CFS in teens is crucial because the disease can greatly affect their social life, schooling, and future job opportunities, not to mention the strain it puts on their families.

OBJECTIVES

A woman physician takes notes as a patient tilts her head and points to her throat.

  1. Deeply profile the biology of pediatric ME/CFS patients vs controls.
  2. Test cellular energy metabolism changes in ME/CFS vs controls.
  3. Evaluate “good day” signatures vs “bad day” signatures in pediatric ME/CFS.
  4. Assess biology for patterns that corresponds to patient symptoms in individuals.
  5. 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.