Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes

References

• Fukuda K, Straus S, Hickie I, et al. Chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994;121:953–9
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Clinical Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children. NICE clinical guideline 53. London: National Institute for Health and Clinical Excellence; 2007
   Google Scholar
• Goudsmit EM, Nijs J, Jason LA, Wallman KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document. Disabil Rehabil 2012;34:1140--7
   Google Scholar
• White PD, Goldsmith KA, Johnson AL, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet 2011;377:823–36
   PubMed Web of Science ®Google Scholar
• Larun L, Malterud K. Finding the right balance of physical activity: a focus group study about experiences among patients with chronic fatigue syndrome. Patient Educ Counsel 2011;83:222–6
   PubMed Web of Science ®Google Scholar
• Christiansen C, Clark F, Kielhofner G, Rogers J. Position paper: occupation. American Occupational Therapy Association. Am J Occupat Therapy 1995;49:1015--18
   PubMed Web of Science ®Google Scholar
• Lyons M, Orozovic N, Davis J, Newman J. Doing-being-becoming: occupational experiences of persons with life-threatening illnesses. Am J Occupat Therapy 2002;56:285–95
   PubMed Web of Science ®Google Scholar
• Anderson J, Ferrans C. The quality of life of persons with chronic fatigue syndrome. J Nerv Mental Dis 1997;185:359--67
   PubMed Web of Science ®Google Scholar
• Nacul L, Lacerda E, Campion P, et al. The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. BMC Publ Health 2011;11:402
   PubMed Web of Science ®Google Scholar
• Taylor R. Quality of life and symptom severity for individuals with chronic fatgiue syndrome: findings from a randomized clinical trial. Am J Occupat Therapy 2004;58:35–43
   PubMed Web of Science ®Google Scholar
• Meyer A. The philosophy of occupational therapy. Arch Occupat Therapy 1922;1:1–10
   Google Scholar
• Demitrack M, Crofford L. Evidence for and pathophyiologic implications of hypothalamic-pituitary-adrenal dysregulation in fibromyalgia and chronic fatigue syndrome. Ann New York Acad Sci 1998;840:684–97
   PubMed Web of Science ®Google Scholar
• Beard G. Neurasthenia, or nervous exhaustion. Boston Med Surg J 1869;80:217–21
   Google Scholar
• Holmes GP, Kaplan J, Gantz N, et al. Chronic fatigue syndrome: a working case definition. Ann Intern Med 1988;108:387–9
   PubMed Web of Science ®Google Scholar
• Wojcik W, Armstrong D, Kanaan R. Chronic fatigue syndrome: labels, meanings and consequences. J Psychosom Res 2011;70:500–4
   PubMed Web of Science ®Google Scholar
• Harvey S, Wadsworth M, Wessely S, Hotopf M. Etiology of chronic fatigue syndrome:testing popular hypotheses using a national birth cohort study. Psychosom Med 2008;70:488–95
   PubMed Web of Science ®Google Scholar
• Goodwin L, White PD, Hotopf M, et al. Psychopathology and physical activityas predictors of chronic fatigue syndrome in the 1958 British birth cohort: a replication study of the 1946 and 1970 birth cohorts. Ann Epidemiol 2011;21:343–50
   PubMed Web of Science ®Google Scholar
• Ware N. Suffering and the social construction of illness; the deligitimation of illness experience in chronic fatigue syndrome. Med Anthropol Quarterly 1992;6:347–61
   Web of Science ®Google Scholar
• Van Houdenhove B, Onghena P, Neerinckx E, Hellin J. Does high ‘action-proneness' make people more vulnerable to chronic fatigue syndrome? A controlled psychometric test. J Psychosom Res 1995;39:633–40
   PubMed Web of Science ®Google Scholar
• Van Houdenhove B, Neerinckx E, Onghena P, et al. Pre-morbid “overactive” lifestyle in chronic fatigue syndrome and fibromyalgia. An etiological factor or proof of good citizenship? J Psychosom Res 2001;51:571--6
   PubMed Web of Science ®Google Scholar
• Van Houdenhove B, Van den Eede F, Luyten P. Does hyothalamic-pituitary-adrenal axis hypofunction in chronic fatigue syndrome reflect a ‘crash' in the stress system? Med Hypotheses 2009;72:701–5
   PubMed Web of Science ®Google Scholar
• Van den Eede F, Moorkens G, Van Houdenhove B, et al. Hypothalamic-pituitary-adrenal axis function in chronic fatigue syndrome. Neuropsychobiology 2007;55:112–20
   PubMed Web of Science ®Google Scholar
• Cleare A. The neuroendocrinology of chronic fatigue syndrome. Endocrine Rev 2003;24:236–52
   PubMed Web of Science ®Google Scholar
• Gaab J, Huster D, Peisen R, et al. Hypothalamic-pituitary-adrenal axis reactivity in chronic fatigue syndrome and health under psychological, physiological, and pharmacological stimulation. Psychosom Med 2002;64:951–62
   PubMed Web of Science ®Google Scholar
• Deary V, Chalder T. Personality and perfectionism is chronic fatigue syndrome: a closer look. Psychol Health 2010;25:465–75
   PubMed Web of Science ®Google Scholar
• Luyten P, Kempke S, Van Wambeke P, et al. Self-critical perfectionism, stress generation, and stress sensitivity in patients with chronic fatigue syndrome: relationship with severity of depression. Psychiatry 2011;74:21–30
   PubMed Web of Science ®Google Scholar
• Fukuda S, Kuratsune H, Tajima S, et al. Premorbid personality in chronic fatigue syndrome as determined by temperament and character inventory. Comprehens Psychiatr 2010;51:78–85
   PubMed Web of Science ®Google Scholar
• Evering R, van Weering M, Groothuis-Oudshoorn K, Vollenbroek-Hutton M. Daily physical activity of patients with chronic fatigue syndrome: a systematic review. Clin Rehabil 2011;25:112–33
   PubMed Web of Science ®Google Scholar
• Kop W, Lyden A, Berlin A, et al. Ambulatory monitoring of physical activity and symptoms in fibromylagia and chronic fatigue syndrome. Arthrit Rheumat 2005;52:296–303
   PubMed Web of Science ®Google Scholar
• Rahman K, Burton A, Galbraith S, et al. Sleep-wake behavior in chronic fatige syndrome. Sleep 2011;34:671–8
   PubMed Web of Science ®Google Scholar
• Burton C, Knoop H, Popovic N, et al. Reduced complexity of activity patterns with Chronic Fatigue Syndrome: a case control study. BioPsychoSoc Med 2009;3:1--9
   PubMedGoogle Scholar
• Chastin S, Granat M. Methods of objective measure, quantification and analysis of sedentary behaviour and inactivity. Gait Posture 2010;31:82–6
   PubMed Web of Science ®Google Scholar
• van der Werf SP, Prins JB, Vercoulen JHMM, et al. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. J Psychosom Res 2000;49:373–9
   PubMed Web of Science ®Google Scholar
• Scheeres K, Knoop H, Bleijenberg G. Clinical assessment of the physical activity pattern of chronic fatigue syndrome patients: a validation of three methods. Health Qual Life Outcomes 2009;7:29
   PubMed Web of Science ®Google Scholar
• Butler S, Chalder T, Ron M, Wessely S. Cognitive behaviour therapy in chronic fatigue syndrome. J Neurol, Neurosurg Psychiatr 1991;54:153–8
   PubMed Web of Science ®Google Scholar
• Sharpe M, Hawton K, Simkin S, et al. Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial. Br Med J 1996;312:22–6
   PubMed Web of Science ®Google Scholar
• Vlaeyen J, Karsdrop P, Gatzounis R, et al. The PACE Trial in chronic fatigue syndrome. Lancet 2011;377:1834
   PubMed Web of Science ®Google Scholar
• Gallagher AM, Coldrick AR, Hedge B, et al. Is the chronic fatigue syndrome an exercise phobia? A case control study. J Psychosom Res 2005;58:367–73
   PubMed Web of Science ®Google Scholar
• Wiborg JF, Knoop H, Stulemeijer M, et al. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med 2010;40:1281–7
   PubMed Web of Science ®Google Scholar
• Taylor RR, Kielhofner GW. An occupational thearapy approach to persons with chronic fatigue syndrome: part two, assessment and intervention. Occup Ther Health 2003;17:63–87
   PubMedGoogle Scholar
• Cox DL. Chronic fatigue syndrome: an evaluation of an inpatient occupational therapy intervention. Br J Occupat Ther 2002;65:461–8
   Google Scholar
• McDermott C, Richards S, Ankers S, et al. An evaluation of a chronic fatigue lifestyle managment programme focusing on the outcome of return to work or training. Br J Occupat Ther 2004;67:269–73
   Google Scholar
• Crawley E, Collin S, White P, et al. and the CFS/ME National Outcomes Database. Treatment outcomes in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM 2013;106:555–65
   PubMed Web of Science ®Google Scholar
• McCann T, Clark E. Grounded theory in nursing research: part 1 methodology. Nurse Res 2003;1:7–18
   Google Scholar
• Stanley M, Cheek J. Grounded theory: exploiting the potential for occupational therapy. Br J Occupat Ther 2003;66:143–50
   Google Scholar
• Charmaz K. Constructing grounded theory. London: Sage Publications Ltd; 2006
   Google Scholar
• Green J, Thorogood N. Qualitative methods for health research. London: SAGE Publications Ltd; 2009
   Google Scholar
• Corbin J, Strauss A. Basics of qualitative research. 3rd ed. London: Sage Publications Ltd; 2008
   Google Scholar
• Glaser B, Strauss A. The discovery of grounded theory. Chicago (IL): Aldine; 1967
   Google Scholar
• Silverman D. Interpreting qualitative data. 3rd ed. London: Sage Publications; 2006
   Google Scholar
• Kvale S, Brinkman S. Interviews: learning the craft of qualitative research interviewing. London: Sage Publications Ltd; 2009
   Google Scholar
• Kantartzis S, Molineux M. The influence of western society's construction of a healthy daily life on the conceptualisation of occupation. J Occupat Sci 2011;18:62–80
   Google Scholar
• Stalmeisters D, Brannigan C. A preliminary exploration into the prevalence of Early Maladaptive Schemas in a group of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Counsel Psychol Rev 2011;26:34–42
   Google Scholar
• Gray M, Fossey E. Illness experience and occupations of people with chronic fatigue syndrome. Austra J Occupat Ther 2003;50:127–36
   Google Scholar
• Pemberton S, Cox DL. Perspectives of time and occuaption: experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis. J Occupat Sci 2013. [Epub ahead of print]. DOI:10.1080/14427591.2013.804619
   Google Scholar
• Van Cauwenbergh D, De Kooning M, Ickmans K, Nijs J. How to exercise people with chronic fatigue syndrome: evidence-based practice guidelines. Eur J Clin Investig 2012;42:1136–44
   PubMed Web of Science ®Google Scholar
• Van Damme S, Crombez G, Van Houdenhove B, et al. Well-being in patients with chronic fatigue syndrome: the role of acceptance. J Psychosom Res 2006;61:595–9
   PubMed Web of Science ®Google Scholar
• Sampalli T, Berlasso E, Fox R, Petter M. A controlled study of the effect of a mindfulness-based stress reduction technique in women with multiple chemical sensitivity, chronic fatigue syndrome and fibromyalgia. J Multidisciplinary Healthcare 2009;2:53–9
   PubMedGoogle Scholar
• Charmaz K. Good days, bad days: the self in chronic illness and time. New Brunswick (NJ): Rutgers University Press; 1997
   Google Scholar