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)

Abstract:

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.

Source: Pheby DFH, Araja D, Berkis U, Brenna E, Cullinan J, de Korwin JD, Gitto L, Hughes DA, Hunter RM, 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 (Basel). 2020 Apr 7;8(2). pii: E88. doi: 10.3390/healthcare8020088. https://www.ncbi.nlm.nih.gov/pubmed/32272608

Counting The Cost – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Foreword:
For the past 20 years there has been extensive argument in the UK about the causes and diagnostic criteria for this illness. For some considerable time, the conventional wisdom was that this illness was purely psychological in origin.
The World Health Organisation has clearly classified CFS/ME as a neurological disease in its International Classification of Diseases (ICD), section G93.3.
Despite this clarity, there is still a lack of universal agreement about CFS/ ME in the UK. This has led to a paralysis of research into both the biomedical causes of and treatments for CFS/ME, and the research that has been done has focused primarily on the psychological side.
The time has come for a proper research strategy for CFS/ME, looking at both bio-medical causes and treatments. In order to commence a dialogue with government and other interested parties, it is essential for everyone to be on the same page. To achieve that degree of agreement will be a challenge, but I believe the first step in that process is to start a new public conversation about this horrible illness.
The purpose of this report by the health think tank 2020health, sponsored by the Optimum Health Clinic, is to do just that. Nothing concentrates the mind like money. This is the first cost of illness study of CFS/ME to the UK economy combining direct costs (including primary and secondary care contacts, prescription and over the counter
medications, and complimentary treatments) and indirect costs (including work productivity losses, informal care and welfare payments). The results are staggering.
In commissioning this report, our hope is that we can:
* Demonstrate clearly all the costs of CFS/ME to the UK economy;
* Use this report to start a new public conversation about the illness;
* Start a dialogue with all interested parties to create a new strategy to research the bio-medical causes of and treatments for CFS/ME
You can read the full report HERE.

The economic impact of chronic fatigue syndrome in Georgia: direct and indirect costs

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is a debilitating chronic illness affecting at least 4 million people in the United States. Understanding its cost improves decisions regarding resource allocation that may be directed towards treatment and cure, and guides the evaluation of clinical and community interventions designed to reduce the burden of disease.

METHODS: This research estimated direct and indirect costs of CFS and the impact on educational attainment using a population-based, case-control study between September 2004 and July 2005, Georgia, USA. Participants completed a clinical evaluation to confirm CFS, identify other illnesses, and report on socioeconomic factors. We estimated the effect of CFS on direct medical costs (inpatient hospitalizations, provider visits, prescription medication spending, other medical supplies and services) and loss in productivity (employment and earnings) with a stratified sample (n = 500) from metropolitan, urban, and rural Georgia. We adjusted medical costs and earnings for confounders (age, sex, race/ethnicity, education, and geographic strata) using econometric models and weighted estimates to reflect response-rate adjusted sampling rates.

RESULTS: Individuals with CFS had mean annual direct medical costs of $5,683. After adjusting for confounding factors, CFS accounted for $3,286 of these costs (p < 0.01), which were driven by increased provider visits and prescription medication use. Nearly one-quarter of these expenses were paid directly out-of pocket by those with CFS. Individuals with CFS reported mean annual household income of $23,076. After adjustment, CFS accounted for $8,554 annually in lost household earnings (p < 0.01). Lower educational attainment accounted for 19% of the reduction in earnings associated with CFS.

CONCLUSIONS: Study results indicate that chronic fatigue syndrome may lead to substantial increases in healthcare costs and decreases in individual earnings. Studies have estimated up to 2.5% of non-elderly adults may suffer from CFS. In Georgia, a state with roughly 5.5 million people age 18-59, illness could account for $452 million in total healthcare expenditures and $1.2 billion of lost productivity.

 

Source: Lin JM, Resch SC, Brimmer DJ, Johnson A, Kennedy S, Burstein N, Simon CJ. The economic impact of chronic fatigue syndrome in Georgia: direct and indirect costs. Cost Eff Resour Alloc. 2011 Jan 21;9(1):1. doi: 10.1186/1478-7547-9-1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033815/ (Full article)

 

The economic impact of chronic fatigue syndrome

Abstract:

OBJECTIVE: To estimate the economic impact of chronic fatigue syndrome (CFS) on the individual, the government, and the community.

DESIGN: The financial burden produced by CFS was studied by calculating the direct and indirect costs arising from the disorder. Data regarding use of health resources, income and employment were obtained by questionnaire from patients with CFS. In addition, aggregate Medicare data on the incidence and fees charged for each Schedule item for these patients was obtained.

SETTING: The Richmond Valley, New South Wales.

PARTICIPANTS: Forty-two patients with CFS identified in our population-based prevalence study.

RESULTS: The conservative estimate of the per annum costs of CFS in the Richmond Valley, with a prevalence of 37.1 cases per 100,000, was $396,000. If extrapolated to the Australian population, we estimate CFS would generate an annual cost of at least $59 million.

CONCLUSION: This disorder constitutes a large but neglected area of health resource utilisation and economic burden.

Comment in: The economic impact of chronic fatigue syndrome. [Med J Aust. 1993]

 

Source: Lloyd AR, Pender H. The economic impact of chronic fatigue syndrome. Med J Aust. 1992 Nov 2;157(9):599-601. http://www.ncbi.nlm.nih.gov/pubmed/1406420