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)

Elenka Brenna (Coresponding Author), Diana Araja, Derek F. H. Pheby

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Abstract

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
Original languageEnglish
Title of host publicationME/CFS
Subtitle of host publicationCauses, Clinical Features and Diagnosis
EditorsDerek F.H. Pheby, Kenneth J. Friedman, Modra Murovska, Pawel Zalewski
Place of PublicationBasel
PublisherMDPI
Pages109-119
VolumeSpecial Issue Published in Medicina
ISBN (Print)978-3-0365-2438-2, 978-3-0365-2439-9
Publication statusPublished - 2022

Keywords*

  • ME/CFS

Field of Science*

  • 3.2 Clinical medicine
  • 3.3 Health sciences

Publication Type*

  • 3.2. Articles or chapters in other proceedings other than those included in 3.1., with an ISBN or ISSN code

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