From chaos and insecurity to understanding and coping: experienced benefits of a group-based education programme for people with chronic fatigue syndrome

References

• Anderson, J. S., & Ferrans, C. E. (1997). The quality of life of persons with chronic fatigue syndrome. Journal of Nervous and Mental Disease, 185, 359–367.
   PubMed Web of Science ®Google Scholar
• Anderson, V. R., Jason, L. A., Hlavaty, L. E., Porter, N., & Cudia, J. (2012). A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Education and Counseling, 86, 147–155. doi:10.1016/j.pec.2011.04.016
   PubMed Web of Science ®Google Scholar
• Åsbring, P., & Närvänen, A. L. (2002). Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research, 12, 148–160. doi:10.1177/104973230201200202
   PubMed Web of Science ®Google Scholar
• Bazelmans, E., Prins, J. B., Lulofs, R., van der Meer, J. W., Bleijenberg, G., & Netherlands Fatigue Research Group. (2005). Cognitive behaviour group therapy for chronic fatigue syndrome: A non-randomised waiting list controlled study. Psychotherapy and Psychosomatics, 74, 218–224. doi:10.1159/000085145
   PubMed Web of Science ®Google Scholar
• Belgamwar, R. B., Jorsh, M. S., Knisely-Marpole, A., Snowden, H., Mayall, E., Singhal, A., & Jones, J. M. (2009). Multidisciplinary group treatment for chronic fatigue syndrome. Progress in Neurology and Psychiatry, 13(1), 27–29. doi:10.1002/pnp.109
   Google Scholar
• Brown, M. M., Bell, D. S., Jason, L. A., Christos, C., & Bell, D. E. (2012). Understanding Long-term outcomes of chronic fatigue syndrome. Journal of Clinical Psychology, 68, 1028–1035. doi:10.1002/jclp.21880
   PubMed Web of Science ®Google Scholar
• Bülow, P. H., & Hydén, L. C. (2003). Patient school as a way of creating meaning in a contested illness: The case of CFS. Health, 7, 227–249. doi:10.1177/1363459303007002876
   Web of Science ®Google Scholar
• Burns, A. B., Brown, J. S., Sachs-Ericsson, N., Plant, E. A., Curtis, J. T., Fredrickson, B. L., & Joiner, T. E. (2008). Upward spirals of positive emotion and coping: Replication, extension, and initial exploration of neurochemical substrates. Personality and Individual Differences, 44, 360–370. doi:10.1016/j.paid.2007.08.015
   PubMed Web of Science ®Google Scholar
• Carlsen, B. (2003). Professional support of self-help groups: A support group project for Chronic fatigue syndrome patients. British Journal of Guidance & Counselling, 31, 289–303. doi:10.1080/0306988031000147884
   Web of Science ®Google Scholar
• Carruthers, B. M., Jain, A. K., De Meirleir, K. L., Peterson, D. L., Klimas, N. G., Lemer, A. M., … Van de Sande, M. I. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome, 11(1), 7–115. doi:10.1300/J092v11n01_02
   Google Scholar
• CFS/ME Working Group. (2002). Report to the chief medical officer of an independent working group. London: Department of Health.
   Google Scholar
• Clarke, J. N., & James, S. (2003). The radicalized self: The impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Social Science and Medicine, 57, 1387–1395. doi:10.1016/s0277-9536(02)00515-4
   PubMed Web of Science ®Google Scholar
• Drachler, M. L., Leite, J. C., Hooper, L., Hong, C. S., Pheby, D., Nacul, L., … Poland, F. (2009). The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: A systematic review. BMC Public Health, 9, 458. doi:10.1186/1471-2458-9-458
   PubMed Web of Science ®Google Scholar
• Dumit, J. (2006). Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science and Medicine, 62, 577–590. doi:10.1016/j.socscimed.2005.06.018
   PubMed Web of Science ®Google Scholar
• Edwards, C. R., Thompson, A. R., & Blair, A. (2007). An ‘overwhelming illness’: Women's experiences of learning to live with chronic fatigue syndrome/myalgic encephalomyelitis. Journal of Health Psychology, 12, 203–214. doi:10.1177/1359105307071747
   PubMed Web of Science ®Google Scholar
• Fredrickson, B. L., & Branigan, C. (2005). Positive emotions broaden the scope of action and thought-action repertoires. Cognition and Emotion, 19, 313–332. doi:10.1080/02699930441000238
   PubMed Web of Science ®Google Scholar
• Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., Komaroff, A., & International Chronic Fatigue Syndrome Study Group. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953–959. doi:10.7326/0003-4819-121-12-199412150-00009
   PubMed Web of Science ®Google Scholar
• Goodman, C., & Evans, M. (2006). Using focus groups. In K. Gerrish & A. Lacey (Eds.), The research process in nursing (pp. 353–366). Oxford, UK and Malden, MA: Blackwell.
   Google Scholar
• Gray, M. L., & Fossey, E. M. (2003). Illness experience and occupations of people with chronic fatigue syndrome. Australian Occupational Therapy Journal, 50(3), 127–136. doi:10.1046/j.1440-1630.2003.00336.x
   Google Scholar
• Horton, S. M., Poland, F., Kale, S., Drachler M. L., Leite, J. C., McArthur, M. A., … Nacul, L. (2010). Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: A qualitative study of perspectives from professional practice. BMC Family Practice, 11, 89. doi:10.1186/1471-2296-11-89
   PubMed Web of Science ®Google Scholar
• Jason, L., Brown, M., Evans, M., Anderson, V., Lerch, A., Brown, A., … Porter, N. (2011). Measuring substantial reductions in functioning in patients with chronic fatigue syndrome. Disability and Rehabilitation, 33, 589–598. doi:10.3109/09638288.2010.503256
   PubMed Web of Science ®Google Scholar
• Jason, L. A., & Brown, M. M. (2013). Sub-typing daily fatigue progression in chronic fatigue syndrome. Journal of Mental Health, 22(1), 4–11. doi:10.3109/09638237.2012.670879
   PubMed Web of Science ®Google Scholar
• Jason, L. A., Porter, N., Hunnell, J., Rademaker, A., & Richman, J. A. (2011). CFS prevalence and risk factors over time. Journal of Health Psychology, 16, 445–456. doi:10.1177/1359105310383603
   PubMed Web of Science ®Google Scholar
• Jason, L. A., Richman, J. A., Rademaker, A. W., Jordan, K. M., Plioplys, A. V., Taylor, R. R., … Plioplys, S. (1999). A community-based study of chronic fatigue syndrome. Archives of Internal Medicine, 159, 2129–2137. doi:10.1001/archinte.159.18.2129
   PubMed Web of Science ®Google Scholar
• Jootun, D., McGhee, G., & Glenn, R. (2009). Reflexivity: Promoting rigour in qualitative research. Nursing Standard, 23(23), 42–46. doi:10.7748/ns2009.02.23.23.42.c6800
   PubMedGoogle Scholar
• Kempke, S., Goossens, L., Luyten, P., Bekaert, P., Van Houdenhove, B., & Van Wambeke, P. (2010). Predictors of outcome in a multi-component treatment program for chronic fatigue syndrome. Journal of Affective Disorders, 126, 174–179. doi:10.1016/j.jad.2010.01.073
   PubMed Web of Science ®Google Scholar
• Kitzinger, J. (1995). Qualitative research: Introducing focus groups. British Medical Journal, 311, 299–301. doi:10.1136/bmj.311.7000.299
   PubMed Web of Science ®Google Scholar
• Krupp, L. B., LaRocca, N. G., Muir-Nash, J., & Steinberg, A. D. (1989). The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Archives of Neurology, 46, 1121–1123. doi:10.1001/archneur.1989.00520460115022
   PubMed Web of Science ®Google Scholar
• Lopez, C., Antoni, M., Penedo, F., Weiss, D., Cruess, S., Segotas, M. C., … Fletcher, M. A. (2011). A pilot study of cognitive behavioral stress management effects on stress, quality of life, and symptoms in persons with chronic fatigue syndrome. Journal of Psychosomatic Research, 70, 328–334. doi:10.1016/j.jpsychores.2010.11.010
   PubMed Web of Science ®Google Scholar
• McDermott, C., Richards, S. C. M., Ankers, S., Selby, M., Harmer, J., & Moran, C. J. (2004). An evaluation of a chronic fatigue lifestyle management programme focusing on the outcome of return to work or training. British Journal of Occupational Therapy, 67, 269–273.
   Google Scholar
• Pardaens, K., Haagdorens, L., Van Wambeke, P., Van den Broeck, A., & Van Houdenhove, B. (2006). How relevant are exercise capacity measures for evaluating treatment effects in chronic fatigue syndrome? Results from a prospective, multidisciplinary outcome study. Clinical Rehabilitation, 20(1), 56–66. doi:10.1191/0269215506cr9140a
   PubMed Web of Science ®Google Scholar
• Pheby, D., & Saffron, L. (2009). Risk factors for severe ME/CFS. Biology and Medicine, 1(4), 50–74.
   Google Scholar
• Richards, L., & Morse, J. M. (2012). Readme first for a user’s guide to qualitative methods. Los Angeles, CA: Sage.
   Google Scholar
• Saxty, M., & Hansen, Z. (2005). Group cognitive behavioural therapy for chronic fatigue syndrome: A pilot study. Behavioural and Cognitive Psychotherapy, 33, 311–318. doi:10.1017/s1352465805002092
   Web of Science ®Google Scholar
• Söderberg, S., & Evengård, B. (2001). Short-term group therapy for patients with chronic fatigue syndrome. Psychotherapy and Psychosomatics, 70(2), 108–111. doi:10.1159/000056234
   PubMed Web of Science ®Google Scholar
• Taylor, R. R. (2004). Quality of life and symptom severity for individuals with chronic fatigue syndrome: Findings from a randomized clinical trial. American Journal of Occupational Therapy, 58(1), 35–43. doi:10.5014/ajot.58.1.35
   PubMed Web of Science ®Google Scholar
• The ME Association. (2010). Managing my M.E.: What people with ME/CFS and their carers want from the UK’s health and social services. Bucks: Author. Retrieved from http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf
   Google Scholar
• Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473–483.
   PubMed Web of Science ®Google Scholar
• White, P. D., Goldsmith, K. A., Johnson, A. L., Potts, L., Walwyn, R., DeCesare, J. C., … Sharpe, M. (2011). Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): A randomised trial. Lancet, 377, 823–836. doi:10.1016/s0140-6736(11)60096-2
   PubMed Web of Science ®Google Scholar
• Whitehead, L. (2006). Toward a trajectory of identity reconstruction in chronic fatigue syndrome/myalgic encephalomyelitis: A longitudinal qualitative study. International Journal of Nursing Studies, 43, 1023–1031. doi:10.1016/j.ijnurstu.2006.01.003
   PubMed Web of Science ®Google Scholar
• Wibeck, V. (2000). Fokusgrupper: om fokuserade gruppintervjuer som undersökningsmetod [Focus groups: About focused group interviews as research method]. Lund: Studentlitteratur.
   Google Scholar
• Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370. doi:10.1111/j.1600-0447.1983.tb09716.x
   PubMed Web of Science ®Google Scholar