Using time diaries to inform occupational therapy practice for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An exploratory study.
Rachel Roxburgh, Julie Hughes, Wendy Milgate
PMID 40337282WHAT IT FOUND
Nine adults with ME/CFS found the NIH Activity Record insightful for spotting occupational imbalance, but too burdensome and rigid to capture daily symptom fluctuations.
They suggested expanding rating scales and adding open comments to make it usable.
Key findings
01Participants reported the time diary provided insight into their time-use and helped them understand the meaning behind their activities.
02Completing the diary was described as time-consuming, intensive, and cognitively demanding for most participants.
03The two-day snapshot and 1-4 rating scale failed to capture the fluctuating nature of ME/CFS symptoms.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The sample was very small (n=9) and recruited via Facebook support groups, introducing potential selection bias. Diagnoses were self-reported without formal medical verification. The two-day snapshot could not account for the inherent variability and relapse-remission cycles of ME/CFS. The 1-4 Likert scale was too condensed to detect subtle changes in symptoms or motivation. The rigid 30-minute time blocks did not accommodate parallel activities or multitasking common in daily life. Participants found the diary cognitively demanding, which may have affected data quality.
The easy way to misread this
Do not treat the lack of statistically significant changes in symptoms across the day as evidence that ME/CFS is stable. The study design (two separate days, coarse rating scale) and participant feedback explicitly state that the tool failed to capture the fluctuating nature of the condition.