We are now six months into the DePaul University research project, “Can We Reach Consensus on ME/CFS Research Criteria?” Below is an overview of progress so far and what comes next.
The project aims to understand the barriers to developing an agreed‑upon ME/CFS research case definition, identify which symptoms are essential, and explore how consensus might be achieved. Reaching agreement on how ME/CFS is defined and measured is crucial for improving diagnosis, research quality, and ultimately patient care.
Background:
Diagnosing and studying ME/CFS remains challenging. More than 25 case definitions have been created since 1985, leading to inconsistency across research and clinical practice. This lack of standardisation makes it difficult to compare studies, identify biomarkers, and develop effective treatments.
The DePaul team is working to identify where consensus already exists — and where it does not — to support more accurate, meaningful, and patient‑centred research in the future.
Progress to Date:
1. Scoping Review of Severity and Burden Measures
A comprehensive scoping review examining how illness severity and burden are measured in ME/CFS research has been completed and submitted for publication.
Key findings include:
- Studies use a wide range of tools, many not designed for ME/CFS.
- There is little standardisation in how severity and burden are defined.
- Patients strongly preferred ME‑specific tools, with 79.2% endorsing FUNCAP as the most accurate reflection of their experience.
This highlights the need for research measures that better capture the lived reality of ME/CFS.
2. Global Survey with Over 4,000 Participants
More than 4,000 people with ME/CFS, caregivers, clinicians, researchers, and advocates completed an international survey assessing commonly used diagnostic and severity measures.
Participant breakdown:
- Patients: 95%
- Caregivers: 6.8%
- Researchers: 4.5%
- Healthcare providers: 3.8%
- Advocates: 8.7%
- Prefer not to answer: 0.2%
Key findings:
- FUNCAP was the most endorsed measure (79.2%).
- Tools like the SF‑36, EQ‑5D, and Energy Index Point Score ranked much lower.
- Many respondents felt existing tools fail to reflect their lived experience.
- One participant wrote: “Most of what the doctors ask is their idea and does not reflect what the patients feel. Ask us.”
High agreement (>90%) was found on several core diagnostic principles:
- The need for detailed selection criteria
- Requiring post‑exertional malaise (PEM)
- Considering disease duration
- Using more homogeneous subgroups in research
These findings were presented at the 2025 IACFS/ME International Conference and the Midwest Ecological Conference.
3. Engagement and Knowledge Sharing
The team has actively shared early findings through:
- A workshop at the 2025 IACFS/ME International Conference
- A poster presentation: “Can We Reach Consensus on a Research Case Definition for ME/CFS?”
- Ongoing discussions with clinicians, researchers, and patient groups
This ensures the project remains grounded in community priorities and real‑world experience.
Next Steps:
Completing the Patient Survey Manuscript
The team is preparing the full manuscript for publication. Analysing the data will help “recontextualize subjective participant experiences as objective evidence.”
Publishing the Scoping Review
The scoping review is currently under peer review.
Exploring Qualitative Responses
The team is considering a deeper analysis of open‑ended survey responses, which could provide valuable insight into patient experiences, frustrations, and priorities.
More information:
- The ME Association: Research Update: ME Research Case Definition Consensus Survey
|October 9, 2025 - The ME Association:Research: New Study to Harmonise Research Definitions in ME/CFS
|September 12, 2025 - MEA Ramsay Research Fund : Can We Reach Consensus on ME/CFS Research Criteria?