Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective

References

• Sunnquist M, Jason LA, Nehrke P, et al. A comparison of case definitions for myalgic encephalomyelitis and chronic fatigue syndrome. J Chronic Dis Manag. 2017;2:1013.
   PubMedGoogle Scholar
• Fukuda K, Straus SE, Hickie I, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Int Med. 1994;121:953–959.
   PubMed Web of Science ®Google Scholar
• Carruthers BM, Jain AK, De Meirleir KL, et al. Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. J Chronic Fatigue Syndr. 2003;11:7–115.
   Google Scholar
• Institute of Medicine (IOM). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness. JAMA. 2015;313:1101–1102.
   PubMed Web of Science ®Google Scholar
• Adamowicz JL, Caikauskaite I, Friedberg F. Defining recovery in chronic fatigue syndrome: a critical review. Qual Life Res. 2014;23:2407–2416.
   PubMed Web of Science ®Google Scholar
• Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med. 2005;55:20–31.
   Google Scholar
• Knoop H, Bleijenberg G, Gielissen MF, et al. Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? Psychother Psychosom. 2007;76:171–176.
   PubMed Web of Science ®Google Scholar
• White PD, Goldsmith K, Johnson AL, et al. Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychol Med. 2013;43:2227–2235.
   PubMed Web of Science ®Google Scholar
• Edwards J. PACE team response shows a disregard for the principles of science. J Health Psychol. 2017;22:1155–1158.
   PubMed Web of Science ®Google Scholar
• Wilshire C, Kindlon T, Matthees A, et al. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue. 2017;5:43–56.
   Google Scholar
• Brooks HL, Rogers A, Sanders C, et al. Perceptions of recovery and prognosis from long-term conditions: the relevance of hope and imagined futures. Chronic Illn. 2015;11:3–20.
   PubMed Web of Science ®Google Scholar
• Brurberg KG, Fønhus MS, Larun L, et al. Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. BMJ Open. 2014;4:e003973.
   PubMed Web of Science ®Google Scholar
• Asbring P. Chronic illness–a disruption in life: identity‐transformation among women with chronic fatigue syndrome and fibromyalgia. J Adv Nurs. 2001;34:312–319.
   PubMed Web of Science ®Google Scholar
• Schoofs N, Bambini D, Ronning P, et al. Death of a lifestyle: the effects of social support and healthcare support on the quality of life of persons with fibromyalgia and/or chronic fatigue syndrome. Orthop Nurs. 2004;23:364–374.
   PubMedGoogle Scholar
• Davidson L, Roe D. Recovery from versus recovery in serious mental illness: one strategy for lessening confusion plaguing recovery. J Ment Heal. 2007;16:459–470.
   Google Scholar
• Devendorf AR, Brown AA, Jason LA. Patient views on recovery from myalgic encephalomyeletis and chronic fatigue syndrome. Undergoing Revisions
   Google Scholar
• Brown MM, Bell DS, Jason LA, et al. Understanding long-term outcomes of chronic fatigue syndrome. J Clin Psychol. 2012;68:1028–1035.
   PubMed Web of Science ®Google Scholar
• Camacho J, Jason LA. Psychosocial factors show little relationship to chronic fatigue syndrome recovery. J Psychol Behav Sci. 1998;12:60–70.
   Google Scholar
• Meehan TJ, King RJ, Beavis PH, et al. Recovery-based practice: do we know what we mean or mean what we know? Aust N Z J Psychiatry. 2008;42:177–182.
   PubMed Web of Science ®Google Scholar
• Deale A, Wessely S. Patients’ perceptions of medical care in chronic fatigue syndrome. Soc Sci Med. 2001;52:1859–1864.
   PubMed Web of Science ®Google Scholar
• Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;8:59–82.
   Web of Science ®Google Scholar
• Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20:1408.
   Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15:398–405.
   PubMed Web of Science ®Google Scholar
• Boyatzis RE. Transforming qualitative information: thematic analysis and code development. Cle (OH): SAGE; 1998.
   Google Scholar
• MedlinePlus [Internet]. Bethesda (MD): Merriam-Webster; 2017 [cited 2017 May 3]. Available from: http://www.merriam-webster.com/medlineplus/recovery.
   Google Scholar
• Campbell JL, Quincy C, Osserman J, et al. Coding in-depth semistructured interviews: problems of unitization and intercoder reliability and agreement. Socio Methods Res. 2013;42:294–320.
   Web of Science ®Google Scholar
• McHugh ML. Interrater reliability: the kappa statistic. Biochem Med (Zagreb). 2012;22:276–282.
   PubMed Web of Science ®Google Scholar
• Elliott R, Fischer CT, Rennie DL. Evolving guidelines for publication of qualitative research studies in psychology and related fields. Br J Clin Psychol. 1999;38:215–229.
   PubMed Web of Science ®Google Scholar
• Goudsmit EM, Nijs J, Jason LA, et al. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document. Disabil Rehabil. 2012;34:1140–1147.
   PubMed Web of Science ®Google Scholar
• Walker LS, Greene JW. The functional disability inventory: measuring a neglected dimension of child health status. J Pediatr Psychol. 1991;16:39–58.
   PubMed Web of Science ®Google Scholar
• Bungo MW, Charles JB, Johnson PC Jr. Cardiovascular deconditioning during space flight and the use of saline as a countermeasure to orthostatic intolerance. Aviat Space Environ Med. 1985;56:985–990.
   PubMed Web of Science ®Google Scholar
• Fennell PA. The four progressive stages of the CFS experience: a coping tool for patients. J Chronic Fatigue Syndr. 1995;1:69–79.
   Google Scholar
• Jason LA, Fennell PA, Klein S, et al. An investigation of the different phases of the CFS illness. J Chronic Fatigue Syndr. 1999;5:35–54.
   Google Scholar
• Jason LA, Fennell PA, Taylor RR, et al. An empirical verification of the Fennell phases of the CFS illness. J Chronic Fatigue Syndr. 2000;6:47–56.
   Google Scholar
• Åsbring P, Närvänen AL. Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med. 2003;57:711–720.
   PubMed Web of Science ®Google Scholar
• McHorney CA, Ware JE Jr, Lu JR, et al. The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care. 1994;32:40–66.
   PubMed Web of Science ®Google Scholar
• Jason LA, So S, Brown AA, et al. Test–retest reliability of the DePaul Symptom Questionnaire. Fatigue. 2015;3:16–32.
   PubMed Web of Science ®Google Scholar
• Chalder T, Berelowitz G, Pawlikowska T, et al. Development of a fatigue scale. J Psychosom Res. 1993;37:147–153.
   PubMed Web of Science ®Google Scholar
• Mundt JC, Marks IM, Shear MK, et al. The work and social adjustment scale: a simple measure of impairment in functioning. Br J Psychiatry. 2002;180:461–464.
   PubMed Web of Science ®Google Scholar
• Cella DF, Tulsky DS, Gray G, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. JCO. 1993;11:570–579.
   PubMed Web of Science ®Google Scholar
• Friedberg F. Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community? Fatigue. 2016;4:127–131.
   Web of Science ®Google Scholar
• Sharpe M, Carson A. “Unexplained” somatic symptoms, functional syndromes, and somatization: do we need a paradigm shift? Ann Intern Med. 2001;134:926–930.
   PubMed Web of Science ®Google Scholar