Abstract
Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)—COST action 15111—from 2016 to 2020. The main goal of the Cost Action was to assess the existing knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report our findings and make recommendations for clinical diagnosis, health services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS.
Highlights
Since fatigue is a common complaint in daily life and in association with a range of medical problems, it is important to note that most people with ongoing fatigue do not have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) but rather have symptoms that are caused by other conditions, emotional well-being, or life-style-factors
With good education of primary care physicians, diagnosis and monitoring of people with ME/CFS in primary care are possible and desirable, and referral for specialist services may be indicated in some circumstances (Box 10), viz. for confirmation of diagnosis, when there is doubt; for cases who may benefit from a multi-disciplinary team with specific expertise, including drug treatments or care of those with severe or complicated disease; and for a range of service offerings, such as occupational therapy, supportive counselling, education on self-management and energy/activity management with “pacing”, social services, and advice on access to community support, e.g., for educational, occupational, and social matters, such as benefits
The specialist may be a doctor with expertise in ME/CFS
Summary
The still limited knowledge of health professionals about the disease, including those in primary care, who are often the first port of call for those with ME/CFS, means diagnosis is often missed or delayed, and not infrequently patients remain undiagnosed and do not receive appropriate care for long periods of time. Activities, they receive very little guidance from the health sector or support from social services—where they feel disbelieved and neglected and are often failed by the welfare system [24] Their disability contributes to social isolation, which adds to their burden, and limits their chances of recovery or re-integration in society, by restricting access to healthcare and social support
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