**1. Introduction**

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multisystem disorder, with severe, profound incapacitating fatigue not alleviated by rest, and post-exertional malaise. Other symptoms include cognitive dysfunction, sleep disturbance, and muscle pain. As a result, marked reductions in functional activity and quality of life are encountered [1]. Cases vary markedly in the symptoms they manifest, in severity, and

**Citation:** Brenna, E.; Araja, D.; Pheby, D.F.H. Comparative Survey of People with ME/CFS in Italy, Latvia, and the UK: A Report on behalf of the Socioeconomics Working Group of the European ME/CFS Research Network (EUROMENE). *Medicina* **2021**, *57*, 300. https://doi.org/ 10.3390/medicina57030300

Academic Editor: Tibor Hortobágy<sup>i</sup>

Received: 12 February 2021 Accepted: 19 March 2021 Published: 23 March 2021

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in disease progression. ME/CFS most frequently occurs between ages 20 and 50 but can affect all ages. The majority of patients are female [2]. UK experience suggests that there may be two million patients throughout Europe [3]. Much work has been carried out over several decades to investigate the nature of the syndrome, but marked uncertainty remains over its definition, diagnosis, treatment, and economic impact [4].

The problem of determining the economic impact of ME/CFS in Europe was considered by the socioeconomics working group of EUROMENE (*vide infra*). The economic burden is significant, with productivity losses appearing to be the largest cost element, while effective prevention and treatment give scope for substantial cost reductions. There are problems of economic evaluation because of the arbitrariness of case definitions, and doctors who are unable to diagnose the condition, for reasons including disbelief and lack of understanding, so there is a lack of accurate incidence and prevalence data. Recommendations of the working group include the use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list, the use of purchasing power parities (PPP) to facilitate international comparisons, and the use of EuroQol-5D to measure health status [5].

The European Network on ME/CFS (EUROMENE) is a collaborative, Europe-wide, consortium aiming to address serious gaps in knowledge of ME/CFS. In 2016, EUROMENE received funding from the European Union through the COST programme, and was formally constituted as COST Action 15111. This action aims to "promote further research on ME/CFS with high economic impact" [6]. Working Group 3, on socioeconomics, has endeavored to appraise the economic implications of the disease, its specific objectives including surveying data from European countries on the economic losses due to ME/CFS and developing ways to calculate the direct and indirect economic burdens due to ME/CFS [7].

In pursuit of these objectives, a comparative questionnaire study of ME/CFS patients was carried out in three countries, Italy, Latvia, and the UK, with the aim of identifying appropriate policy measures designed to alleviate the burden of disease both on patients and their families, and on governments. In particular, reducing diagnostic delays should limit progression to severe, prolonged disease, with consequent reductions in its economic impact, including direct and indirect costs, and, most importantly, productivity costs.
