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The economic burden of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): an initial summary of the existing evidence and recommendations for further research

Elenka Brenna, Lara Gitto

Abstract


Background: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) describes a condition of chronic weakness that cannot be alleviated by rest and which is associated with lower quality of life and higher healthcare utilization. In Western countries, its prevalence ranges from 0.2% to 1%. Despite the many efforts carried out during recent decades to investigate the nature of this syndrome, there are still uncertainties and controversies with respect to its definition, diagnosis and what constitutes optimal treatment. Some authors suggest that there may be a significant percentage of patients that are not yet diagnosed with this illness, due to the difficulty in identifying the symptoms. Thus, the economic burden of the disease remains unclear, although it is well recognized that the costs associated with CFS are mainly related to productivity loss.

Methods: A literature review was conducted to investigate this topic, by considering, with a chronological perspective, the most relevant contributions focussed on the economic costs and consequences of CFS/ME.

Results: The literature review describes how the economic burden of CFS has been increasingly considered over recent decades and addresses the aspects of CFS that deserve more attention as this field of study moves forward.

Conclusion: The economic burden of CFS has not been well studied, but recent research demonstrates an increasing interest in the direct and indirect costs of CFS on individuals and Society. The need to establish an optimal, person-centered approach to the diagnosis, management and follow-up of CFS, is an imperative for modern medicine, given the relationship between the nature of clinical practice and the costs incurred by CFS. Further research is required to explore this relationship and to define its policy implications.


Keywords


Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), controversies, cost-effectiveness analysis, economics, person-centered healthcare, QALYs, quality of life

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Richardson, G., Epstein, D., Chew-Graham, C., Dowrick, C., Bentall, R.P., Morriss, R.K., Peters, S., Riste, L., Lovell, K., Dunn, G., Wearden, A.J. & FINE Trial Writing group on behalf of the FINE Trial group. (2013). Cost-effectiveness of supported self-management for CFS/ME patients in primary care. BMC Family Practice 14, 12.

McCrone, P., Sharpe, M., Chalder, T., Knapp, M., Johnson, A.L., Goldsmith, K.A. & White, P.D. (2012). Adaptive pacing, cognitive behavior therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS One 7 (8) e40808.

Burns, D. (2012). Chronic fatigue syndrome or myalgic encephalomyelitis. Nursing Standard 26 (25) 48-56.

Whiting, P., Bagnall, A.M., Sowden, A.J., Cornell, J.E., Mulrow, C.D. & Ramirez, G. (2001). Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. Journal of the American Medical Association 286 (11) 1360-1368.

Assefi, N.P., Coy, T.V., Uslan, D., Smith, W.R. & Buchwald, D. (2003). Financial, occupational, and personal consequences of disability in patients with chronic fatigue syndrome and fibromyalgia compared to other fatiguing conditions. Journal of Rheumatology 30 (4) 804-880.

Chalder, T., Deale, A. & Wessely, S. (1999). The Treatment of Chronic Fatigue Syndrome. In: Difficult Clinical Problems in Psychiatry. Rader M, Nader D., eds., pp. 135-153. London: Martin Dunitz.

Meng, H., Friedberg, F. & Castora-Binkley, M. (2014). Cost-effectiveness of chronic fatigue self-management versus usual care: a pilot randomized controlled trial. BMC Family Practice 15, 184.

Griffith, J.P. & Zarrouf, F.A. (2008). A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression. Primary Care Companion to the Journal of Clinical Psychiatry 10 (2) 120-128.

Jason, L.A., Benton, M.C., Valentine, L., Johnson, A. & Torres-Harding, S. (2008). The economic impact of ME/CFS: Individual and societal costs. Dynamic Medicine 7 (6). doi:10.1186/1476-5918-7-6.

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. et al. (1991). A report - chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine 84, 118-121.

Lloyd, A., Wakefield, D., Boughton, C. & Dwyer, D. (1988). What is myalgic encephalomyelitis? Lancet 1 (8597) 1286-1287.

Lloyd, A.R., Hickie, I., Boughton, C.R., Spencer, O. & Wakefield, D. (1990). Prevalence of chronic fatigue syndrome in an Australian population. Medical Journal of Australia 153, 522-528.

Holmes, G.P., Kaplan, J.E., Gantz, N.M., Komaroff, A.L., Schonberger, L.B., Straus, S.E., Jones, J.F., Dubois, R.E., Cunningham-Rundles, C., Pahwa, S. et al. (1988). Chronic fatigue syndrome: a working case definition. Annals of Internal Medicine 108, 378-379.

Fukuda, K., Straus, S.E., Hickie, I., Sharpe, M.C., Dobbins, J.G. & Komaroff, A. (1994). The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine 121, 953-959.

RACP (The Royal Australasian College of Physicians). (2002). Chronic fatigue syndrome: Clinical practice guidelines 2002. Available at: http://emerge.org.au/wp-content/uploads/2014/06/cfs2.pdf. Accessed January 15, 2017.

Reeves, W.C., Lloyd, A., Vernon, S.D., Klimas, N., Jason, L.A., Bleijenberg, G., Evengard, B., White, P.D., Nisenbaum, R., Unger, E.R. & International Chronic Fatigue Syndrome Study Group. (2003). Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for solution. BMC Health Services Research 3, 25.

Carruthers, B.M. & Van de Sande, M.I. (2006). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Overview of the Canadian Consensus Document. A Clinical Case Definition and Guidelines for Medical Practitioners 2006. Available at: http://www.ahmf.org/me_cfs_overview.pdf. Accessed January 15, 2017.

Collin, S.M., Crawley, E., May, M.T. & Sterne, J.A., Hollingworth, W. & UK CFS/ME National Outcomes Database. (2011). The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database. BMC Health Services Research 11, 217.

Lin, J., Resch, S., Brimmer, D., Johnson, A., Kennedy, S., Burstein, N. & Simon, C.J. (2011). The economic impact of chronic fatigue syndrome in Georgia: direct and indirect costs. Cost Effectiveness and Resource Allocation 9 (1) 1.

Jason, L.A., Porter, N., Brown, M., Anderson, V., Brown, A., Hunnell, J. & Lerch, A. (2009). CFS: A Review of Epidemiology and Natural History Studies. Bulletin of the IACFS/ME 17 (3) 88-106.

Maquet, D., Demoulin, C. & Crielaard, G.M. (2006). Chronic fatigue syndrome: a systematic review. Annales de Réadaptation et Médecine Physique 49 (6) 418-427.

Prins, J.B., Van der Meer, J.W. & Bleijenberg, G. (2006). Chronic fatigue syndrome. Lancet 367, 346-355.

Devanur, L.D. & Kerr, J.R. (2006). Review: Chronic fatigue syndrome. Journal of Clinical Virology 37 (3) 139-150.

Kawakami, N., Iwata, N., Fujihara, S. & Kitamura, T. (1998). Prevalence of chronic fatigue syndrome in a community population in Japan. Tohoku Journal of Experimental Medicine 186, 33-41.

Njoku, M..G.C., Jason, L.A. & Torres-Harding, S.R. (2005). The relationships among coping styles and fatigue in an ethnically diverse sample. Ethnicity & Health 10, 263-278.

Lloyd, A.R. & Pender, H. (1992). The economic impact of chronic fatigue syndrome. Medical Journal of Australia 157 (9) 599-601.

Lloyd, A.R. & Pender, H. (1994). Chronic Fatigue Syndrome. Does it Need More Healthcare Resources? Pharmacoeconomics 5 (6) 460-464.

Loveless, M.O., Lloyd, A. & Perpich, R. (1994). Chronic fatigue syndrome: summary discussion of social and policy issues. Clinical Infectious Diseases 18 (Supplement I) 5163-5165.

Cameron, R.S. (1995). The cost of long term disability due to fibromyalgia, chronic fatigue syndrome and repetitive strain injury: The private insurance perspective. Journal of Musculoskeletal Pain 3 (2) 169-172.

Bombardier, C.H. & Buchwald, D. (1996). Chronic fatigue, chronic fatigue syndrome, and fibromyalgia. Disability and health-care use. Medical Care 34 (9) 924-930.

McCrone, P., Ridsdale, I., Darbyshire, L. & Seed, P. (2004). Cost-effectiveness of cognitive behavioural therapy, graded exercise and usual care for patients with chronic fatigue in primary care. Psychological Medicine 34, 991-999.

Severens, J.L., Prins, J.B., van der Wilt, G.J., van der Meer, J.W. & Bleijenberg, G. (2004). Cost-effectiveness of cognitive behaviour therapy for patients with chronic fatigue syndrome. QJM An International Journal of Medicine 97 (3) 153-161.

Reynolds, K.J., Vernon, S.D., Bouchery, E. & Reeves, W.C. (2004). The economic impact of chronic fatigue syndrome. Cost Effectiveness and Resource Allocation 2, 4.

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, 572-578.

O’Dowd, H., Gladwell, P., Rogers, C.A., Hollinghurst, S. & Gregory, A. (2006). Cognitive behavioural therapy in chronic fatigue syndrome: a randomised controlled trial of an outpatient group programme. Health Technology Assessment 10 (37) 1-121.

Porter, N.S., Jason, L.A., Boulton, A., Bothne, N. & Coleman, B. (2010). Alternative medical interventions used in the treatment and management of myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia. Journal of Alternative and Complementary Medicine 16 (3) 235-249.

Alraek, T., Lee, M.S., Choi, T.Y., Cao, H. & Liu, J. (2011). Complementary and alternative medicine for patients with chronic fatigue syndrome: a systematic review. BMC Complementary and Alternative Medicine 11, 87.

Skapinakis, P., Lewis, G. & Mavreas, V. (2003). One-year outcome of unexplained fatigue syndromes in primary care: results from an international study. Psychological Medicine 33 (5) 857-866.

Huibers, M.J., Leone, S.S., Kant, I.J. & Knottnerus, J.A. (2006). Chronic fatigue syndrome-like caseness as a predictor of work status in fatigued employees on sick leave: four years follow up study. Occupational and Environmental Medicine 63 (8) 570-572.

Wessely, S., Chalder, T., Hirsch, S., Wallace, P. & Wright, D. (1997). The prevalence and morbidity of chronic fatigue and chronic fatigue syndrome: a prospective primary care study. American Journal of Public Health 87 (9) 449-455.

Miles, A. & Asbridge, J.E. (2016). The chronic illness problem. The person-centered solution. European Journal for Person Centered Healthcare 4 (1) 1-5.

Miles, A. & Asbridge, J.E. (2017). Person-Centered Healthcare - moving from rhetoric to methods, through implementation to outcomes. European Journal for Person Centered Healthcare 5 (1) 1-9.

European Society for Person Centered Healthcare. (2016). The Person-Centered Care of Medically Unexplained Symptoms. A one-day symposium. Available at:

http://pchealthcare.org.uk/sites/pchealthcare.org.uk/files/conference/download/espch_causehealth_st_georges_university_of_london_person-centered_care_of_mus_delegate_brochure.pdf




DOI: http://dx.doi.org/10.5750/ejpch.v5i3.1379

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