Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms. — CFSMEATLAS
Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms.
Yang, Manshu, Keller, San, Lin, Jin-Mann S · Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022 · DOI
Quick Summary
This study tested whether two questionnaires (PROMIS scales) accurately measure sleep problems and pain in people with ME/CFS. Researchers surveyed over 600 ME/CFS patients and 338 healthy people at seven clinics across the USA. The questionnaires worked well—they consistently measured what they were supposed to measure, and they clearly showed the difference between ME/CFS patients (who had worse sleep and pain) and healthy controls.
Why It Matters
Reliable outcome measures are essential for ME/CFS research and clinical care. This validation study confirms that these PROMIS questionnaires accurately capture sleep and pain symptoms in ME/CFS populations, enabling researchers to use them confidently in future trials and clinicians to track patient progress over time.
Observed Findings
ME/CFS participants scored 1 standard deviation higher (T-scores 57.68–62.40) than national norms on all four PROMIS sleep and pain measures.
ME/CFS patients had significantly worse scores than healthy controls across all measures, with large effect sizes (η²=0.35–0.45).
All four measures showed high internal consistency (ω=0.92–0.97), indicating reliable measurement.
No measurement bias was detected based on age or sex, suggesting these tools work fairly across demographic groups.
Pain interference measures showed acceptable responsiveness to changes over time in the follow-up assessment.
Inferred Conclusions
PROMIS sleep and pain short forms are valid and reliable tools for measuring these symptoms in ME/CFS clinical and research settings.
These measures effectively distinguish between ME/CFS patients at different functional impairment levels.
Sleep and pain are significantly elevated in ME/CFS compared to the general population.
These PROMIS measures can be recommended for use in future ME/CFS research and clinical practice.
Remaining Questions
How do these measures respond to specific ME/CFS treatments or interventions over longer follow-up periods?
What This Study Does Not Prove
This study does not establish that sleep problems or pain cause ME/CFS symptoms or functional impairment—only that these measures reliably detect differences between patients and healthy people. The cross-sectional design limits assessment of how these measures respond to treatment over time. The study also cannot explain what causes the elevated sleep and pain scores in ME/CFS.