E3 PreliminaryModerate confidencePEM ✓Methods-PaperPeer-reviewedMachine draft
Development and measurement properties of the PEM/PESE activity questionnaire (PAQ).
Davenport, Todd E, Stevens, Staci R, Stevens, Jared et al. · Work (Reading, Mass.) · 2023 · DOI
Quick Summary
This study created and tested a new questionnaire called the PAQ that helps measure how post-exertional malaise (PEM) affects a person's ability to do everyday activities. Patients chose three activities that were important to them and rated how much their performance had changed compared to their good days and before they got sick. The questionnaire was given to 675 people twice to make sure it reliably measured the same thing each time, and the results showed it works well.
Why It Matters
This study provides ME/CFS patients and researchers with a validated, patient-centered tool to objectively measure how post-exertional malaise impacts daily life. Having a reliable questionnaire allows researchers to better study PEM in clinical trials and helps clinicians track patient progress, which is critical for understanding and managing this disabling symptom.
Observed Findings
- 675 complete PAQ surveys were analyzed with test-retest reliability ranging from fair to excellent depending on the specific function measured.
- Minimum detectable change values (MDC95) indicated the questionnaire is responsive to changes in patient function.
- Ceiling and floor effects were infrequently observed, suggesting the scales appropriately capture the full range of functional ability.
- Patients successfully self-selected three personally relevant activities of daily living for measurement.
Inferred Conclusions
- The PAQ is a valid, reliable, and sensitive instrument for measuring the impact of post-exertional malaise on activities of daily living.
- The questionnaire can detect meaningful changes in patient-reported function over time.
- Patient-selected activities may be more relevant and responsive than standardized function measures in ME/CFS research.
Remaining Questions
- How does the PAQ perform when measuring less commonly selected functions, and should additional standardized functions be included?
- Does the PAQ successfully detect changes in function following clinical interventions or natural disease progression?
- How does the PAQ compare to other existing functional outcome measures in ME/CFS populations?
What This Study Does Not Prove
This study does not prove that the PAQ can measure treatment effectiveness or predict long-term outcomes in ME/CFS patients. It only demonstrates that the questionnaire is reliable and responds to changes; separate research would be needed to show whether it actually detects meaningful clinical improvements or is useful for specific patient populations.
Tags
Symptom:Post-Exertional MalaiseFatigue
Phenotype:Long COVID Overlap
Method Flag:Exploratory OnlyMixed Cohort
Metadata
- DOI
- 10.3233/WOR-220553
- PMID
- 36938768
- Review status
- Machine draft
- Evidence level
- Early hypothesis, preprint, editorial, or weak support
- Last updated
- 8 April 2026