Myalgic encephalomyelitis/chronic fatigue Syndrome (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union


Autoři: Elin B. Strand aff001;  Luis Nacul aff002;  Anne Marit Mengshoel aff003;  Ingrid B. Helland aff004;  Patricia Grabowski aff005;  Angelika Krumina aff006;  Jose Alegre-Martin aff007;  Magdalena Efrim-Budisteanu aff008;  Slobodan Sekulic aff009;  Derek Pheby aff010;  Giorgos K. Sakkas aff011;  Carmen Adella Sirbu aff012;  F. Jerome Authier aff013
Působiště autorů: Faculty of Health Studies, VID Specialized University, Oslo, Norway aff001;  Faculty of Infectious and Tropical Diseases, London School of Hygiene & Tropical Medicine, London, United Kingdom aff002;  Department of Health Sciences, Institute of Health and Society, University of Oslo, Oslo, Norway aff003;  Norwegian National Advisory Unit on CFS/ME, Division of Pediatrics, Rikshospitalet, Oslo University Hospital, Oslo, Norway aff004;  Institute for Medical Immunology, Charité-Universitätsmedizin Berlin, Berlin, Germany aff005;  Department of Infectiology and Dermatology, Riga Stradiņš University, Riga, Latvia aff006;  CFS Unit, Institut de Recerca Vall d'Hebron, Hospital Universitari Vall d'Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain aff007;  Research Psychiatry Laboratory, “Alexandru Obregia” Clinical Hospital of Psychiatry, Bucharest, Romania aff008;  Department of Neurology, Medical Faculty Novi Sad, University of Novi Sad, Novi Sad, Serbia aff009;  Buckinghamshire New University, High Wycombe, United Kingdom aff010;  Live Laboratory, School of PE and Sport Sciences, University of Thessaly, Thessaly, Greece aff011;  Neurology, Universitary Emergency Central Military Hospital, Bucharest, Romania aff012;  Reference Centre for Neuromuscular Diseases & INSERM U955-Team10, Henri Mondor University Hospital, Créteil, France aff013
Vyšlo v časopise: PLoS ONE 14(12)
Kategorie: Research Article
doi: 10.1371/journal.pone.0225995

Souhrn

ME/CFS is a chronic, complex, multisystem disease that often limits the health and functioning of the affected patients. Diagnosing patients with ME/CFS is a challenge, and many different case definitions exist and are used in clinical practice and research. Even after diagnosis, medical treatment is very challenging. Symptom relief and coping may affect how patients live with their disease and their quality of life. There is no consensus on which diagnostic criteria should be used and which treatment strategies can be recommended for patients. The purpose of the current project was to map the landscape of the Euromene countries in respect of national guidelines and recommendations for case definition, diagnosis and clinical approaches for ME/CFS patients. A 23 items questionnaire was sent out by email to the members of Euromene. The form contained questions on existing guidelines for case definitions, treatment/management of the disease, tests and questionnaires applied, and the prioritization of information for data sampling in research. We obtained information from 17 countries. Five countries reported having national guidelines for diagnosis, and five countries reported having guidelines for clinical approaches. For diagnostic purposes, the Fukuda criteria were most often recommended, and also the Canadian Consensus criteria, the International Consensus Criteria and the Oxford criteria were used. A mix of diagnostic criteria was applied within those countries having no guidelines. Many different questionnaires and tests were used for symptom registration and diagnostic investigation. For symptom relief, pain and anti-depressive medication were most often recommended. Cognitive Behavioral Therapy and Graded Exercise treatment were often recommended as disease management and rehabilitative/palliative strategies. The lack of consistency in recommendations across European countries urges the development of regulations, guidance and standards. The results of this study will contribute to the harmonization of diagnostic criteria and treatment for ME/CFS in Europe.

Klíčová slova:

Depression – Diagnostic medicine – Fatigue – Netherlands – Psychotherapy – Quality of life – Research assessment – Treatment guidelines


Zdroje

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