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


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


1. Fukuda K, Straus S, Hickie, et al. The chronic fatigue syndrome: A comprehensive approach to its definition and study. Ann Intern Med 1994; 121: 221–236.

2. Carruthers B, Jain A, De Meirleir K, Peterson D, Klimas N, Lerner AM, et al. Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition. Journal of Chronic fatigue Syndrome 2003; 11: 7–115.

3. Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. Myalgic encephalomyelitis: International Consensus Criteria. J Intern Med 2011 Oct;270(4):327–38. doi: 10.1111/j.1365-2796.2011.02428.x 21777306

4. Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, et al. A report-chronic fatigue syndrome: guidelines for research. J Roy Soc Med 1991;84(2):118–121. 1999813

5. IOM (Institute of Medicine). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness”. Washington, DC: The National Academies; 2015.

6. Spain: 2011 Quality Agency & Technological Evaluation of Catalonia (AQuAS) Spain. Agency for regional health services (Agenas)

7. Italy: Rome, 2014:

8. United Kingdom: The UK National Institute for Health and Care Excellence (NICE), August 2007. (reviewed in 2014, next reviewed in 2017, but moved to the NICE “static list”, i.e. not to be reviewed until new evidence is forthcoming)

9. Netherlands:CBO:

10. Norway: The Norwegian Directory og Health, Guidelines for CFS/ME, 2015:

11. Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, et al., and International Chronic Fatigue Syndrome Study Group. Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res 2003; 31:3(1): 25. doi: 10.1186/1472-6963-3-25 14702202

12. Jason LA, Evans M, Porter N, Brown M, Brown A, Hunnell J, et al. The development of a revised Canadian Myalgic Encephalomyelitis-Chronic Fatigue Syndrome case definition. American Journal of Biochemistry and Biotechnology 2011; 6 (2): 120–135.

13. Ware J E, & Sherbourne CD. The Mos 36-item short-form health survey (Sf-36): Conceptual-framework and item selection. Medical Care. 1992; 30(6), 473–483. 1593914

14. Zigmond AS, Snait RP. The hospital anxiety and depression scale. Acta Psychiatr Scand, 1983; 67: 361–70. doi: 10.1111/j.1600-0447.1983.tb09716.x 6880820

15. Castro-Marrero J, Sáez-Francàs N, Santillo D, Alegre J. M. Treatment and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: all roads lead to Rome.: Br J Pharmacol 2017; 174: 345–369. doi: 10.1111/bph.13702 28052319

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