Long-Term Trajectories

Long-term outcomes in ME/CFS are variable. Meta-analyses suggest that full recovery occurs in approximately 5% of patients, while 20–30% show some improvement, and the remainder remain stable or worsen (Brurberg et al. 2014). The model reproduces these statistics through patient-to-patient variation in parameters. Monte Carlo simulation with parameter distributions derived from population data generates a distribution of trajectories:

WarningLimitation: Long-Term Prediction Uncertainty

Long-term trajectory predictions are highly sensitive to parameter values and perturbation history, both of which are poorly characterized for individual patients. The trajectory distribution above should be interpreted as a population-level statistical prediction, not as a prognosis for any individual patient. Personalized trajectory prediction requires longitudinal data collection over months to years with sufficient biomarker resolution to constrain patient-specific parameters—a capability not yet available in clinical practice.

References

Brurberg, Kjetil G, Vivían Schünemann Føngebø, Lillebeth Larun, Anne Marit Mengshoel, Line Landmark, Kirsti Malterud, and Peter D White. 2014. “Case Definitions for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): A Systematic Review.” BMJ Open 4 (2): e003973. https://doi.org/10.1136/bmjopen-2013-003973.