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Article

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)

1
Department of Economics and Finance, Università Cattolica del Sacro Cuore, Largo Agostino Gemelli 1, 20123 Milan, Italy
2
Department of Dosage Form Technology, Faculty of Pharmacy, Institute of Microbiology and Virology, Riga Stradins University, Dzirciema Street 16, LV-1007 Riga, Latvia
3
Society and Health, Buckinghamshire New University, High Wycombe HP11 2JZ, UK
*
Author to whom correspondence should be addressed.
The author is retired.
Academic Editor: Tibor Hortobágyi
Medicina 2021, 57(3), 300; https://doi.org/10.3390/medicina57030300
Received: 12 February 2021 / Revised: 18 March 2021 / Accepted: 19 March 2021 / Published: 23 March 2021
(This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)
Background and Objectives: A comparative survey of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients was carried out in three countries, with the aim of identifying appropriate policy measures designed to alleviate the burden of disease both on patients and their families, and also on public institutions. The survey addressed demographic features, the economic impact of the disease on household incomes, patterns of medical and social care, specific therapies, social relationships, and the impact of the illness on quality of life. Materials and Methods: Parallel surveys were undertaken in Italy, Latvia, and the UK. There were 88 completed responses from Italy, 75 from Latvia, and 448 from the UK. To facilitate comparisons, 95% confidence intervals were calculated in respect of responses to questions from all three countries. To explore to what extent general practitioners (GPs) manage ME/CFS disease, a separate questionnaire for GPs, with questions about the criteria for granting a diagnosis, laboratory examinations, the involvement of specialists, and methods of treatment, was undertaken in Latvia, and there were 91 completed responses from GPs. Results: The results are presented in respect of sociodemographic information, household income, disease progression and management, perceived effectiveness of treatment, responsibility for medical care, personal care, difficulty explaining the illness, and quality of life. Demographic details were similar in all three countries, and the impact of illness on net household incomes and quality of life. There were significant differences between the three countries in illness progression and management, which may reflect differences in patterns of health care and in societal attitudes. Graded exercise therapy, practiced in the UK, was found to be universally ineffective. Conclusions: There were similarities between respondents in all three countries in terms of demographic features, the impact of the illness on household incomes and on quality of life, and on difficulties experienced by respondents in discussing their illness with doctors, but also differences in patterns of medical care, availability of social care, and societal attitudes to ME/CFS. View Full-Text
Keywords: Myalgic Encephalomyelitis; chronic fatigue syndrome; ME/CFS; economic impact; medical care; social care; quality of life Myalgic Encephalomyelitis; chronic fatigue syndrome; ME/CFS; economic impact; medical care; social care; quality of life
MDPI and ACS Style

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

AMA Style

Brenna E, Araja D, Pheby DFH. 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(3):300. https://doi.org/10.3390/medicina57030300

Chicago/Turabian Style

Brenna, Elenka, Diana Araja, and Derek F.H. Pheby 2021. "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 57, no. 3: 300. https://doi.org/10.3390/medicina57030300

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