DePaul University Project: “Can We Reach Consensus on ME/CFS Research Criteria?”

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Update: Can We Reach Consensus on ME/CFS Research Criteria?

We are now six months into the DePaul University research project, “Can We Reach Consensus on ME/CFS Research Criteria?”

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.

Read an overview of progress so far and what comes next on the blog: https://meassociation.org.uk/yk9g

#MECFS #pwME #MyalgicE #Research #RamsayResearch
 
From the link above:
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.
Click to expand...

Poster about the project: https://meassociation.org.uk/wp-con...on-MECFS-Research-Criteria-ECO_JadaPoster.pdf
 
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