Physical activity measures in patients with myalgic encephalomyelitis/chronic fatigue syndrome: correlations between peak oxygen consumption, the physical functioning scale of the SF-36 questionnaire, and the number of steps from an activity meter, by CMC van Campen, Peter C Rowe, Freek WA Verheugt & Frans C Visser in Journal of Translational Medicine vol 18, no. 228 (2020) [doi.org/10.1186/s12967-020-02397-7]
Most studies to assess effort intolerance in patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) have used questionnaires. Few studies have compared questionnaires with objective measures like an actometer or an exercise test. This study compared three measures of physical activity in ME/CFS patients: the physical functioning scale (PFS) of the SF-36, the number of steps/day (Steps) using an actometer, and the %peak VO2 of a cardiopulmonary stress test.
Female ME/CFS patients were selected from a clinical database if the three types of measurements were available, and the interval between measurements was ≤ 3 months. Data from the three measures were compared by linear regression.
In 99 female patients the three different measures were linearly, significantly, and positively correlated (PFS vs Steps, PFS vs %peak VO2 and Steps vs %peak VO2: all P < 0.001). Subgroup analysis showed that the relations between the three measures were not different in patients with versus without fibromyalgia and with versus without a maximal exercise effort (RER ≥ 1.1).
In 20 patients re-evaluated for symptom worsening, the mean of all three measures was significantly lower (P < 0.0001), strengthening the observation of the relations between them. Despite the close correlation, we observed a large variation between the three measures in individual patients.
Given the large variation in ME/CFS patients, the use of only one type of measurement is inadequate. Integrating the three modalities may be useful for patient care by detecting overt discrepancies in activity and may inform studies that compare methods of improving exercise capacity.
Disability grading or activity assessment in ME/CFS is most frequently performed using questionnaires like the physical functioning scale of the SF-36. Questionnaires can be augmented by adding more objective measures such as the number of steps on an activity meter and/or by adding peak VO2 data.
The relation between the physical functioning scale and the number of steps, and the relation between activity (steps), perceived activity (physical functioning scale) and the maximum attainable activity (peak VO2) may give insight into a possible over- or under-estimation of the perceived activity and over- or under-performance of physical activities.
Whether a better “energy management” leads to stabilization or improvement over time of patients needs to be studied. Finally, the presented standard deviations may aid the design of outcome studies.