The ME Association is delighted to announce that it has awarded a grant to a pioneering project, “Can We Reach Consensus on a Research Case Definition for ME/CFS?” This initiative builds on the momentum of the Research Case Definition Consensus Statement, which has already garnered international support from researchers, clinicians, and advocacy groups.
The statement highlights longstanding challenges in ME/CFS research—particularly the use of inconsistent diagnostic criteria and the inclusion of participants who may not meet core ME/CFS definitions. This new study aims to address those issues head-on.
Project Overview
The project will be led by Professor Leonard A. Jason from DePaul University in America, and will:
- survey people living with ME/CFS, patient representatives, clinicians and researchers to identify which symptoms are essential for a research case definition.
- conduct a scoping review of severity measures to ensure symptom intensity is consistently evaluated.
- host a panel discussion at the 2025 IACFS/ME conference to map out controversies and pathways to consensus.
By clarifying inclusion and exclusion criteria—and standardising symptom assessment—this work will strengthen cross-study comparability and improve the validity and reliability of future ME/CFS research.
The outputs from this project, plan to include a consensus-informed framework for ME/CFS research definitions, a published report, and practical guidance for researchers worldwide.
For decades, the lack of a consistent research case definition has hindered progress in ME/CFS research. This project is an opportunity to bring together diverse voices—patients, clinicians, and researchers—to build consensus around core symptoms and severity measures.
Professor Leonard Jason
By improving how we define and assess ME/CFS in research, we can lay the groundwork for more reliable studies and ultimately, better outcomes for patients.
Information
The team are conducting a research study because we are trying to learn more about the barriers to reaching and obtaining an ME research case definition. They would like to ask you to take part in this research because you are either someone living with this disease, a patient representative of someone with this disease, or a researcher focused on assessing critical issues around diagnostic criteria for this disease.
You must be age 18 or older to be in this study. This study is not approved for the enrollment of people under the age of 18. If you agree to be in this study, you will be asked to fill out a survey. The survey will include questions about preferences regarding case definitions and severity measures. If there is a question you do not want to answer, you may skip it. The study should take about 10-15 minutes to complete.
Research data collected will be anonymous. The information is collected online in an anonymous way, we will not be able to link your responses back to a person. So, any responses will remain confidential. The team will not try to re-identify the information or contact you.
Participation is voluntary, which means you can choose not to participate. There will be no negative consequences if you decide not to participate or change your mind later after you begin the survey. People can withdraw at any time prior to submitting the survey.
Once you submit your responses online, we will be unable to remove your data later from the study because all data is anonymous and we will not know which survey response belongs to you.
***THIS SURVEY HAS NOW CLOSED 12.11.2025***
If you have any questions, concerns, or complaints about this study or you want to get additional information or provide input about this research, please contact Jada Cripe at jcripe1@depaul.edu, Leonard Jason at ljason@depaul.edu, or Suvetha Ravichandran at sravich2@depaul.edu.
If you have questions about your rights as a research subject, you may contact Research Protections in the Office of Research Services at orp@depaul.edu.
Team Information
- Team: Principal Investigator: Jada Cripe
- Faculty Advisor: Leonard Jason, PhD
- Research Team: Suvetha Ravichandran
Further Information
- The ME Association: Add your signature to a Research Case Definition Consensus Statement for ME/CFS | December 3, 2024