Patients’ experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome – a scoping mixed methods review

References

• Angst, F., Aeschlimann, A., & Angst, J. (2017). The minimal clinically important difference raised the significance of outcome effects above the statistical level, with methodological implications for future studies. Journal of Clinical Epidemiology, 82, 128–16. https://doi.org/10.1016/j.jclinepi.2016.11.016
   PubMed Web of Science ®Google Scholar
• Antcliff, D., Keeley, P., Campbell, M., Woby, S., & McGowan, L. (2016). Exploring patients’ opinions of activity pacing and a new activity pacing questionnaire for chronic pain and/or fatigue: A qualitative study. Physiotherapy, 102(3), 300–307. https://doi.org/10.1016/j.physio.2015.08.001
   PubMed Web of Science ®Google Scholar
• Bates, B. T. (1996). Single-subject methodology: An alternative approach. Medical Science of Sports and Exercise, 28, 631–638.
   PubMed Web of Science ®Google Scholar
• Britten, N., Campbell, R., Pope, C., Donovan, J., Myfanwy, M., & Pill, R. (2002). Using meta ethnography to synthesise qualitative research: A worked example. Journal of Health Services Research and Policy, 7(4), 209–215. https://doi.org/10.1258/135581902320432732
   PubMedGoogle Scholar
• Broughton, J., Harris, S., Beasant, L., Crawley, E., & Collin, S. M. (2017). Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): A qualitative study in England. BMC Health Services Research, 17(1), 384. https://doi.org/10.1186/s12913-017-2337-6
   Web of Science ®Google Scholar
• Carruthers, B. M., Jain, A. K., De Meirleir, K. L., Peterson, D. L., Klimas, N. G., Lerner, A. M., Bested, A. C., Flor-Henry, P., Joshi, P., Powles, A. C. P., Sherkey, J., & van de Sande, M. I. (2003). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Journal of Chronic Fatigue Syndrome, 11(1), 7–115. https://doi.org/10.1300/J092v11n01_02
   Google Scholar
• Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., Marshall-Gradisnik, S., … Stevens, S. (2011). Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270(4), 327–338. https://doi.org/10.1111/j.1365-2796.2011.02428.x
   PubMed Web of Science ®Google Scholar
• Cassell, E. J. (2004). The Nature of Suffering. Oxford University Press.
   Google Scholar
• Castro-Marrero, J., Saez-Francas, N., Santillo, D., & Alegre, J. (2017). Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: All roads lead to Rome. British Journal of Pharmacology, 174(5), 345–369. https://doi.org/10.1111/bph.13702
   Web of Science ®Google Scholar
• Chambers, D., Bagnall, A.-M., Hempel, S., & Forbes, C. (2006). Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: An updated systematic review. Journal of the Royal Society of Medicine, 99(10), 506–520. https://doi.org/10.1258/jrsm.99.10.506
   PubMed Web of Science ®Google Scholar
• Cheshire, A., Ridge, D., Clark, L., & White, P. (2020). Guided graded Exercise Self-help for chronic fatigue syndrome: Patient experiences and perceptions. Disability and Rehabilitation, 42 (3), 368–377.. https://doi.org/10.1080/09638288.2018.1499822
   Web of Science ®Google Scholar
• Chew-Graham, C., Brooks, J., Wearden, A., Dowrick, C., & Peters, S. (2011). Factors influencing engagement of patients in a novel intervention for CFS/ME: A qualitative study. Primary Health Care Research & Development, 12(2), 112–122. https://doi.org/10.1017/S146342361000037X
   Google Scholar
• Clark, L. V., & White, P. D. (2005). The role of deconditioning and therapeutic exercise in chronic fatigue syndrome (CFS). Journal of Mental Health, 14(3), 237–252. https://doi.org/10.1080/09638230500136308
   Google Scholar
• Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2013). Developing and evaluating complex interventions: The new Medical Research Council guidance. International Journal of Nursing Studies, 50(5), 585–592. https://doi.org/10.1016/j.ijnurstu.2012.09.009
   PubMed Web of Science ®Google Scholar
• Davidson, K. (2008). Cognitive-behavioural therapy: Origins and developments. In M. Donaghy, M. Nicol, & K. Davidson (Eds.), Cognitive-behavioural interventions in physiotherapy and occupational therapy (1st ed.). Buttenworth Heinemann, 3–17.
   Google Scholar
• Dennison, L., Stanbrook, R., Moss-Morris, R., Yardley, L., & Chalder, T. (2010). Cognitive behavioural therapy and psychoeducation for chronic fatigue syndrome in young people: Reflections from the families’ perspective. British Journal of Health Psychology, 15(1), 167–183. https://doi.org/10.1348/135910709X440034
   Web of Science ®Google Scholar
• Drachler, M. D., Leite, J. C. D., Hooper, L., Hong, C. S., Pheby, D., Nacul, L., Lacerda, E., Campion, P., Killett, A., McArthur, M., & Poland, F. (2009). The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review. BMC Public Health, 9(1), 458. https://doi.org/10.1186/1471-2458-9-458
   PubMed Web of Science ®Google Scholar
• Edmonds, M., McGuire, H., & Price, J. R. (2004). Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews, 2004, 3. https://doi.org/10.1002/14651858.CD003200
   Google Scholar
• Frank, A. F. (1995). The wounded storyteller. Body, illness, and ethics. The University Press of Chicago Press.
   Google Scholar
• Friedberg, F., Sohl, S., & Schmeizer, B. (2007). Publication trends in chronic fatigue syndrome: Comparisons with fibromyalgia and fatigue: 1995–2004. Journal of Psychosomatic Research, 63(2), 143–146. https://doi.org/10.1016/j.jpsychores.2007.03.003
   Web of Science ®Google Scholar
• Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., Komaroff, A., & Group., I. C. F. S. S. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121(12), 953–959. https://doi.org/10.7326/0003-4819-121-12-199412150-00009
   PubMed Web of Science ®Google Scholar
• Galeoto, G., Sansoni, J., Valenti, D., Mollica, R., Valente, D., Parente, M., & Servadio, A. (2018). The effect of physiotherapy on fatigue and physical functioning in chronic fatigue syndrome patients: A systematic review. Clinica Therapeutica, 169, (4) e184–e188. https://doi.org/10.7417/T.2018.2076
   Google Scholar
• Hannon, K., Peters, S., Fisher, L., Riste, L., Wearden, A., Lovell, K., Turner, P., Leech, Y., & Chew-Graham, C. (2012). Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care: A qualitative study. BMC Family Practice, 13(1), 12. https://doi.org/10.1186/1471-2296-13-93
   Web of Science ®Google Scholar
• Haywood, K. L., Staniszewska, S., & Chapman, S. (2012). Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): A systematic review. Quality of Life Research, 21(1), 35–52. https://doi.org/10.1007/s11136-011-9921-8
   Web of Science ®Google Scholar
• Jacobson, N. (2004). In recovery: The making of mental health policy. Vanderbilt University Press; Eurospan.
   Google Scholar
• Janse, A., Worm-Smeitink, M., Bleijenberg, G., Donders, R., & Knoop, H. (2018). Efficacy of web-based cognitive-behavioural therapy for chronic fatigue syndrome: Randomised controlled trial. British Journal of Psychiatry, 212(2), 112–118. https://doi.org/10.1192/bjp.2017.22
   Web of Science ®Google Scholar
• Jason, L. (2008). The energy envelope theory and myalgic encephalomyelitis/chronic fatigue syndrome. AAOHN Journal, 56(5), 189–195. https://doi.org/10.1177/216507990805600502
   Google Scholar
• Kim, D. Y., Lee, J. S., Park, S. Y., Kim, S. J., & Son, C. G. (2020). Systematic review of randomized controlled trials for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Journal of Translational Medicine, 18(1), 7. https://doi.org/10.1186/s12967-019-02196-9
   PubMed Web of Science ®Google Scholar
• Kleinman, A. (1988). The illness narratives. Basic Book.
   Google Scholar
• Kos, D., van Eupen, I., Meirte, J., Van Cauwenbergh, D., Moorkens, G., Meeus, M., & Nijs, J. (2015). Activity pacing self-management in chronic fatigue syndrome: A randomized controlled trial. American Journal of Occupational Therapy, 69(6905290020), 1–11. https://doi.org/10.5014/ajot.2015.016287
   Google Scholar
• Larun, L., Brurberg, K. G., Odgaard-Jensen, J., & Price, J. R. (2015). Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews, 2 https://doi.org/10.1002/14651858.CD003200
   Web of Science ®Google Scholar
• Larun, L., Brurberg, K. G., Odgaard‐Jensen, J., & Price, J. R. (2019). Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews, 10. https://doi.org/10.1002/14651858.ED000142
   Google Scholar
• Larun, L., & Malterud, K. (2007). Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies. Patient Education and Counseling, 69(1–3), 20–28. https://doi.org/10.1016/j.pec.2007.06.008
   PubMed Web of Science ®Google Scholar
• Malouff, J. M., Thorsteinsson, E. B., Rooke, S. E., Bhullar, N., & Schutte, N. S. (2008). Efficacy of cognitive behavioral therapy for chronic fatigue syndrome: A meta-analysis. Clinical Psychology Review, 28(5), 736–745. https://doi.org/10.1016/j.cpr.2007.10.004
   PubMed Web of Science ®Google Scholar
• Mattingly, C. (1998). Healing dramas and clinical plots. The narrative structure of experience. Cambridge University Press.
   Google Scholar
• Mattingly, C. Performance narratives in the clinical world, 73–94. In Hurwitz,B., Greenhalgh,T., & Skultans,V. (2004). Narrative research in health and illness. BMJ Books.
   Google Scholar
• McDermott, C., Lynch, J., & Leydon, G. M. (2011). Patients’ hopes and expectations of a specialist chronic fatigue syndrome/ME service: A qualitative study. Family Practice, 28(5), 572–578. https://doi.org/10.1093/fampra/cmr016
   PubMed Web of Science ®Google Scholar
• Medicine, I. O. (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. The National Academies Press.
   Google Scholar
• Mengshoel, A. M., Bjorbækmo, W. S., Sallinen, M., & Wahl, A. K. (2019). ‘It takes time, but recovering makes it worthwhile’- A qualitative study of long-term users’ experiences of physiotherapy in primary health care. Physiotherapy Theory and Practice, 1–11. Prepub ahead 13 May. https://doi.org/10.1080/09593985.2019.1616343
   Web of Science ®Google Scholar
• Munn, Z., Peters, M. D. J., Stern, C., Tufanaru, C., McArthur, A., & Aromataris, E. J. B. M. R. M. (2018). Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology, 18(1), 143. https://doi.org/10.1186/s12874-018-0611-x
   PubMed Web of Science ®Google Scholar
• Nacul, L. C., Lacerda, E. M., Campion, P., Pheby, D., Drachler Mde, L., Leite, J. C., Poland, F., Howe, A., Fayyaz, S., & Molokhia, M. (2011). The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. BMC Public Health, 11(1), 402. https://doi.org/10.1186/1471-2458-11-402
   Web of Science ®Google Scholar
• Nijhof, S. L., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L., & van de Putte, E. M. (2012). Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): A randomised controlled trial. The Lancet, 379(9824), 1412–1418. https://doi.org/10.1016/S0140-6736(12)60025-7
   PubMed Web of Science ®Google Scholar
• Nijs, J., Aelbrecht, S., Meeus, M., Van Oosterwijck, J., Zinzen, E., & Clarys, P. (2011). Tired of being inactive: A systematic literature review of physical activity, physiological exercise capacity and muscle strength in patients with chronic fatigue syndrome. Disability and Rehabilitation, 33(17–18), 1493–1500. https://doi.org/10.3109/09638288.2010.541543
   PubMed Web of Science ®Google Scholar
• Njølstad, B. W., Mengshoel, A. M., & Sveen, U. (2019). ‘It’s like being a slave to your own body in a way’: A qualitative study of adolescents with chronic fatigue syndrome. Scandinavian Journal of Occupational Therapy, 26(7), 505–514. https://doi.org/10.1080/11038128.2018.1455895
   PubMed Web of Science ®Google Scholar
• Noblit, G. W., & Hare, R. D. (1988). Meta-ethnography: Synthesizing qualitative studies. Sage.
   Google Scholar
• Nunez, M., Fernandez-Sola, J., Nunez, E., Fernandez-Huerta, J. M., Godas-Sieso, T., & Gomez-Gil, E. (2011). Health-related quality of life in patients with chronic fatigue syndrome: Group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. Clinical Rheumatology, 30(3), 381–389. https://doi.org/10.1007/s10067-010-1677-y
   PubMed Web of Science ®Google Scholar
• Parslow, R. M., Harris, S., Broughton, J., Alattas, A., Crawley, E., Haywood, K., & Shaw, A. (2017). Children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): A systematic review and meta-ethnography of qualitative studies. BMJ Open, 7(1), e012633. https://doi.org/10.1136/bmjopen-2016-012633
   PubMed Web of Science ®Google Scholar
• Peters, M. D. J., Godfrey, C. M., Khalil, H., McInerney, P., Parker, D., & Soares, C. B. (2015). Guidance for conducting systematic scoping reviews. International Journal of Evidence-Based Healthcare, 13(3), 141–146. https://doi.org/10.1097/XEB.0000000000000050
   PubMed Web of Science ®Google Scholar
• Picariello, F., Ali, S., Foubister, C., & Chalder, T. (2017). ‘It feels sometimes like my house has burnt down, but I can see the sky’: A qualitative study exploring patients’ views of cognitive behavioural therapy for chronic fatigue syndrome. British Journal of Health Psychology, 22(3), 383–413. https://doi.org/10.1111/bjhp.12235
   PubMed Web of Science ®Google Scholar
• Pinxsterhuis, I., Sandvik, L., Strand, E. B., Bautz-Holter, E., & Sveen, U. (2017). Effectiveness of a group-based self-management program for people with chronic fatigue syndrome: A randomized controlled trial. Clinical Rehabilitation, 31(1), 93–103. https://doi.org/10.1177/0269215515621362
   Web of Science ®Google Scholar
• Pinxsterhuis, I., Strand, E. B., Stormorken, E., & Sveen, U. (2015). From chaos and insecurity to understanding and coping: Experienced benefits of a group-based education programme for people with chronic fatigue syndrome. British Journal of Guidance & Counselling, 43(4), 463–475. https://doi.org/10.1080/03069885.2014.987725
   Web of Science ®Google Scholar
• Price, J. R., Mitchell, E., Tidy, E., & Hunot, V. (2008). Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews, 3. https://doi.org/10.1002/14651858.CD001027
   Google Scholar
• Reme, S. E., Archer, N., & Chalder, T. (2013). Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis - a qualitative study. British Journal of Health Psychology, 18(3), 508–525. https://doi.org/10.1111/j.2044-8287.2012.02093.x
   PubMed Web of Science ®Google Scholar
• Richards, D. A., & Hallberg, I. R. (2015). Complex interventions in health. An overview of research methods. Routledge.
   Google Scholar
• Sharpe, M. (2011). Chronic fatigue syndrome: Neurological, mental or both. Journal of Psychosomatic Research, 70(6), 498‐499. https://doi.org/10.1016/j.jpsychores.2011.03.003
   Web of Science ®Google Scholar
• Sharpe, M. C., Archard, L. C., Banatvala, J. E., Borysiewicz, L. K., Clare, A. W., David, A., Edwards, R. H., Hawton, K. E., Lambert, H. P., & Lane, R. J. (1991). A report–chronic fatigue syndrome: Guidelines for research. Journal of the Royal Society of Medicine, 84(2), 118–121. https://doi.org/10.1177/014107689108400224
   PubMed Web of Science ®Google Scholar
• Strand, E. B., Mengshoel, A. M., Sandvik, L., Helland, I. B., Abraham, S., & Nes, L. S. (2019a. Pain is associated with reduced quality of life and functional status in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Scandinavian Journal of Pain, 19(1), 61–72. https://doi.org/10.1515/sjpain-2018-0095
   PubMed Web of Science ®Google Scholar
• Strand, E. B., Nacul, L., Mengshoel, A. M., Helland, I. B., Grabowski, P., Krumina, A., Alegre-Martin, J., Efrim-Budisteanu, M., Sekulic, S., Pheby, D., Sakkas, G. K., Sirbu, C. A., & Authier, F. J. (2019b). Myalgic encephalomyelitis/chronic fatigue Syndrome (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union. PloS One, 14(12), e0225995. https://doi.org/10.1371/journal.pone.0225995
   PubMed Web of Science ®Google Scholar
• Thomas, M. A., Sadlier, M. J., & Smith, A. P. (2008). A multiconvergent approach to the rehabilitation of patients with chronic fatigue syndrome: A comparative study. Physiotherapy, 94(1), 35‐42. https://doi.org/10.1016/j.physio.2007.04.013
   Web of Science ®Google Scholar
• Tummers, M., Knoop, H., & Bleijenberg, G. (2010). Effectiveness of stepped care for chronic fatigue syndrome: A randomized noninferiority trial. Journal of Consulting and Clinical Psychology, 78(5), 724–731. https://doi.org/10.1037/a0020052
   PubMed Web of Science ®Google Scholar
• Tummers, M., Knoop, H., van Dam, A., & Bleijenberg, G. (2012). Implementing a minimal intervention for chronic fatigue syndrome in a mental health centre: A randomized controlled trial. Psychological Medicine, 42(10), 2205–2215. https://doi.org/10.1017/S0033291712000232
   PubMed Web of Science ®Google Scholar
• Van Cauwenbergh, D., De Kooning, M., Ickmans, K., & Nijs, J. (2012). How to exercise people with chronic fatigue syndrome: Evidence-based practice guidelines. European Journal of Clinical Investigation, 42(10), 1136–1144. https://doi.org/10.1111/j.1365-2362.2012.02701.x
   Web of Science ®Google Scholar
• Vos-Vromans, D. C., Smeets, R. J., Huijnen, I. P., Koke, A. J., Hitters, W. M., Rijnders, L. J., Pont, M., Winkens, B., & Knottnerus, J. A. (2016). Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: A randomized controlled trial. Journal of Internal Medicine, 279(3), 268–282. https://doi.org/10.1111/joim.12402
   Web of Science ®Google Scholar
• Zhan, S., & Ottenbacher, K. J. (2001). Single subject research designs for disability research. Disability and Rehabilitation, 23(1), 1–8. https://doi.org/10.1080/09638280150211202
   PubMed Web of Science ®Google Scholar