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SPOT-ME: Serial Pediatric Omics Tracking for ME/CFS

  • 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

  1. Deeply profile the biology of paediatric 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.

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