Close this search box.

SPOT ME: Serial Pediatric Omics Tracking for ME/CFS

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.

  • 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
  • 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


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.


  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.
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