When Pacing Lowers Symptom Scores: Potential Bias in ME/CFS Patient-Reported Outcomes and a Conceptual Framework for Context-Adjusted Assessment

In ME/CFS, a lower symptom score does not always mean that a person is doing better: symptoms may decrease because they have reduced their activities to avoid worsening (pacing/energy management). This paper proposes recording changes in symptoms alongside changes in activity to make such scores easier to interpret. The proposed approach has not yet been tested and cannot, on its own, show whether a treatment works.