Defining recovery in chronic fatigue syndrome: a critical review
In chronic fatigue syndrome (CFS), the lack of consensus on how recovery should be defined or interpreted has generated controversy and confusion. The purpose of this paper was to systematically review, compare, and evaluate the definitions of recovery reported in the CFS literature and to make recommendations about the scope of recovery assessments.
A search was done using the MEDLINE, PubMed, PsycINFO, CINAHL, and Cochrane databases for peer review papers that contained the search terms “chronic fatigue syndrome” and “recovery,” “reversal,” “remission,” and/or “treatment response.”
From the 22 extracted studies, recovery was operationally defined by reference with one or more of these domains: (1) pre-morbid functioning; (2) both fatigue and function; (3) fatigue (or related symptoms) alone; (4) function alone; and/or (5) brief global assessment. Almost all of the studies measuring recovery in CFS did so differently. The brief global assessment was the most common outcome measure used to define recovery. Estimates of recovery ranged from 0 to 66 % in intervention studies and 2.6 to 62 % in naturalistic studies.
Given that the term “recovery” was often based on limited assessments and less than full restoration of health, other more precise and accurate labels (e.g., clinically significant improvement) may be more appropriate and informative. In keeping with common understandings of the term recovery, we recommend a consistent definition that captures a broad-based return to health with assessments of both fatigue and function as well as the patient’s perceptions of his/her recovery status.
KeywordsRecovery Chronic fatigue syndrome Operational definition
- 2.Medline Plus. (2013). Recovery (noun). MedlinePlus Merriam-Webster Medical Dictionary. Retrieved October 4, 2013 from http://www.merriam-webster.com/medlineplus/recovery.
- 3.Miriam-Webster Dictionary. (2013). Improvement (noun). Miriam-Webster: An Encyclopedia Britannica Company, Retrieved October 4, 2013, from http://www.merriam-webster.com/dictionary/improvement?s-how=0&t=1382728396.
- 7.Lindsay, R. M., Heidenheim, P. A., Nesrallah, G., Garg, A. X., & Suri, R. (2006). Minutes to recovery after a hemodialysis session: A simple health-related quality of life question that is reliable, valid, and sensitive to change. Clinical Journal of the American Society of Nephrology, 1(5), 952–959.PubMedCrossRefGoogle Scholar
- 17.Camacho, J. M., & Jason, L. A. (1998). Psychosocial factors show little relationship to chronic fatigue syndrome recovery. Journal of Psychology and the Behavioral Sciences, 12, 61–71.Google Scholar
- 18.Hinds, G. M. E., & McCluskey, D. R. (1993). A retrospective study of the chronic fatigue syndrome. Proceedings of the Royal College of Physicians of Edinburgh, 23, 10–14.Google Scholar
- 20.White, P. D., Goldsmith, K., Johnson, A. L., Chalder, T., Sharpe, M., & PACE Trial Management Group. (2013). Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychological Medicine, 31, 1–9.Google Scholar
- 21.White, P. D., Goldsmith, K. A., Johnson, A. L., Potts, L., Walwyn, R., DeCesare, J. C., et al. (2011). Comparison of adaptive pacing therapy, cognitive behavior therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): A randomized trial. The Lancet, 377(9768), 823–836.CrossRefGoogle Scholar
- 24.Huibers, M. J. H., Bleijenberg, G., van Amelsvoort, L. G. P. M., Beurskens, A. J. H. M., van Schayck, C. P., Bazelmans, E., et al. (2004). Predictors of outcome in fatigued employees on sick leave: Results from a randomized trial. Journal of Psychosomatic Research, 57, 443–449.PubMedCrossRefGoogle Scholar
- 26.Nisenbaum, R., Jones, J. F., Unger, E. R., Reyes, M., & Reeves, W. C. (2003). A population-based study of the clinical course of chronic fatigue syndrome. Health and Quality of Life Outcomes, 1(49), 1–9.Google Scholar
- 30.Brouwers, F. M., van der Werf, S., Bleijenberg, G., van der Zee, L., & van der Meer, J. W. N. (2002). The effect of a polynutrient supplement on fatigue and physical activity of patients with chronic fatigue syndrome: A double-blind randomized controlled trial. Quarterly Journal of Medicine, 95, 677–683.CrossRefGoogle Scholar
- 35.van der Werf, S. P., de Vree, B., Alberts, M., van der Meer, J. W. M., Bleijenberg, G., & Netherlands Fatigue Research Group Nijmegen. (2002). Natural course and predicting self-reported improvement in patients with chronic fatigue syndrome with a relatively short illness duration. Journal of Psychosomatic Research, 53, 749–753.PubMedCrossRefGoogle Scholar
- 36.Vercoulen, J. H. M. M., Swanink, C. M. A., Fennis, J. F. M., Galama, J. M. D., van der Meer, J. W. M., & Bleijenberg, G. (1996). Prognosis in chronic fatigue syndrome: A prospective study on the natural course. Journal of Neurology, Neurosurgery and Psychiatry, 60, 489–494.PubMedCrossRefPubMedCentralGoogle Scholar
- 41.Carruthers, B. M., Jain, A. K., de Meirleir, K. L., Peterson, D. L., Klimas, N. G., Lerner, A. M., et al. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome, 11(1), 7–115.CrossRefGoogle Scholar
- 42.Sharpe, M. C., Banatvala, J. E., Borysiewicz, L. K., David, A., Edwards, R. H. T., Hawton, K. E. H., et al. (1990). A report- chronic fatigue syndrome: Guidelines for research. Journal of the Royal Society of Medicine, 84, 118–121.Google Scholar
- 53.Ware, N. (1993). Society, mind and body in chronic fatigue syndrome: An anthropological view. In G. Block & J. Whelan (Eds.), Chronic fatigue syndrome (pp. 62–74). Chichester: UK.Google Scholar