Janse, Anthonie, Nikolaus, Stephanie, Wiborg, Jan F et al. · Journal of psychosomatic research · 2017 · DOI
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.
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.
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.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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