Long-term follow-up after cognitive behaviour therapy for chronic fatigue syndrome.
Janse, Anthonie, Nikolaus, Stephanie, Wiborg, Jan F et al. · Journal of psychosomatic research · 2017 · DOI
Quick Summary
This study followed 511 people for up to 10 years after they completed cognitive behaviour therapy (CBT) for ME/CFS. While about 70% of people maintained improved physical function, fatigue levels increased somewhat over time, and some people experienced a return of severe fatigue and activity limitations. The results suggest CBT can help many people in the long term, but not everyone stays better.
Why It Matters
Long-term follow-up data are rare in ME/CFS research and critical for understanding whether therapy benefits persist. This study addresses whether CBT improvements are durable or temporary, which directly affects how patients and clinicians should view CBT as a long-term management strategy. Understanding who maintains improvement and who relapses can inform better treatment planning and relapse prevention strategies.
Observed Findings
At follow-up (21-125 months post-treatment), mean fatigue severity significantly increased compared to post-treatment scores.
Mean physical functioning significantly decreased compared to post-treatment scores.
37% of participants still had fatigue scores in the normal range at long-term follow-up.
70% of participants reported no impairment in physical functioning at long-term follow-up.
A subgroup of patients reported a return of severe fatigue and compromised physical functioning.
Inferred Conclusions
Positive effects of CBT for CFS on fatigue and physical functioning are partially sustained over 10 years in a majority of treated patients.
A significant minority of patients experience relapse or deterioration in fatigue and functioning despite initial treatment response.
Long-term treatment strategies or relapse prevention interventions may be needed to maintain gains in some patients.
Remaining Questions
What factors distinguish patients who maintain improvement from those who relapse or deteriorate?
Does the observed increase in fatigue at follow-up represent true relapse, natural disease fluctuation, or effects of intervening life events?
What This Study Does Not Prove
This study does not prove that CBT causes the observed improvement or deterioration—it documents outcomes without a control group for comparison at follow-up. It also does not establish whether increased fatigue at follow-up reflects true relapse, natural disease fluctuation, or accumulating life stressors. The study cannot explain why some people maintained gains while others deteriorated.
Tags
Symptom:Fatigue
Method Flag:PEM Not DefinedWeak Case DefinitionMixed Cohort