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

Abstract

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.