Searching for inherited genetic causes of ME/CFS

Non-Invasive Multi-Modal Neuromonitoring in Adults Undergoing Extracorporeal Membrane Oxygenation

NIH-funded research University of Rochester · NIH-11232343

Researchers will sequence the genomes of relatives with ME/CFS to find rare inherited genetic changes that might cause the illness.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionUniversity of Rochester NIH-funded
Lab location1 site (Rochester, United States)
Project IDNIH-11232343 on NIH RePORTER

What this research studies

If you join, researchers will enroll adults from families with multiple ME/CFS cases, focusing on pairs of affected cousins and other affected relatives. They will collect medical information and DNA samples and perform whole-genome sequencing on affected cousin pairs to find rare variants they share. Identified genes and regulatory changes will be checked against larger ME/CFS datasets like DecodeME to see if the same signals appear elsewhere. The team uses high-risk family groups identified through linked genealogy and medical records to increase the chance of finding inherited causes.

Who could benefit from this research

Good fit: Adults (21+) with a confirmed ME/CFS diagnosis who have at least one other affected family member (ideally an affected cousin) and can provide medical records and a DNA sample are ideal candidates.

Not a fit: People without ME/CFS, those without affected relatives, or those seeking immediate clinical treatment are unlikely to gain direct benefit from participation.

Why it matters

Potential benefit: Discovering inherited genetic variants could reveal biological causes of ME/CFS and point to new targets for diagnosis or treatment.

How similar studies have performed: Prior genetic studies have nominated candidate ME/CFS genes but no validated functional variants, so this family-based whole-genome approach is promising but not yet proven for ME/CFS.

Where this research is happening

Rochester, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.