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The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE)

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Society and Health, Buckinghamshire New University, High Wycombe HP11 2JZ, UK
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Department of Dosage Form Technology, Faculty of Pharmacy, Riga Stradins University, Dzirciema Street 16, LV-1007 Riga, Latvia
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Institute of Microbiology and Virology, Riga Stradins University, Dzirciema Street 16, LV-1007 Riga, Latvia
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Department of Economics and Finance, Università Cattolica del Sacro Cuore, Largo Agostino Gemelli 1, 20123 Milan, Italy
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School of Business & Economics, National University of Ireland Galway, University Road, H91 TK33 Galway, Ireland
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Internal Medicine Department, University of Lorraine, 34, cours Léopold, CS 25233, F-54052 Nancy CEDEX, France
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University Hospital of Nancy, Rue du Morvan, 54511 Nancy, France
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Department of Economics, University of Messina, Piazza Pugliatti 1, 98122 Messina, Italy
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Centre for Health Economics & Medicines Evaluation, Bangor University, Bangor LL57 2PZ, UK
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Institute of Epidemiology & Health, Royal Free Medical School, University College London, London NW3 2PF, UK
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School of Medicine, Trinity College Dublin, College Green, D02 PN40 Dublin 2, Ireland
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Global Brain Health Institute, School of Medicine, Trinity College Dublin, College Green, D02 PN40 Dublin 2, Ireland
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Warwick Medical School, University of Warwick, Coventry CV4 7AL, UK
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Author to whom correspondence should be addressed.
Healthcare 2020, 8(2), 88; https://doi.org/10.3390/healthcare8020088
Received: 27 February 2020 / Accepted: 31 March 2020 / Published: 7 April 2020
(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)
We have developed a Europe-wide approach to investigating the economic impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries. The economic burden of ME/CFS in Europe appears large, with productivity losses most significant, giving scope for substantial savings through effective prevention and treatment. However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to different, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients. Other problems include, as for other conditions, difficulties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries. We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list. We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to inform future economic evaluations in ME/CFS. View Full-Text
Keywords: ME/CFS; economic impact; cost-of-illness studies; economic evaluation; healthcare systems ME/CFS; economic impact; cost-of-illness studies; economic evaluation; healthcare systems
MDPI and ACS Style

Pheby, D.F.; Araja, D.; Berkis, U.; Brenna, E.; Cullinan, J.; de Korwin, J.-D.; Gitto, L.; Hughes, D.A.; Hunter, R.M.; Trepel, D.; Wang-Steverding, X. The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE). Healthcare 2020, 8, 88.

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