European Network on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

Research 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.

5. Concluding Remarks and Recommendations for Developing and Organising ME/CFS Services

The following are general recommendations for fully implemented services, but we appreciate that they are not achievable in the short term in many places, especially where knowledge and training in the field are limited or other resources are scarce.

We encourage countries and regions to plan for their services, training, and educational needs according to the specific needs and characteristics of their population and patients and their organizational structures and resources.

A national champion for each country or regions within countries would be highly desirable, especially in places with no or very scarce provision of services for ME/CFS.

For fully functioning services, we recommend 2–4 ME/CFS specialist doctors/1 million population, with a supporting multi-disciplinary team, to include professionals such as nurses, nurse practitioners, occupational therapists, psychologists, dieticians, social workers, etc.; these would staff outpatient services for diagnosis and follow up.

The specialist may be a doctor with expertise in ME/CFS. Internists, neurologists, immunologists, rheumatologists, infectious diseases specialists, and general practitioners are particularly suited for this role, but it may be done by doctors of any specialty, as long as they have the right expertise or training. For children, this role is to be filled by paediatricians.

At the time of writing, we are not aware of any specific programme for the training of doctors to become specialists in ME/CFS, something that has often occurred informally so far. The training and provision of services in secondary care should be aligned with the training of primary care physicians to manage cases in the community. We recognize that the above target is ambitious, considering the current capacity and status of service provision in the continent. They should be seen as tentative and should not replace the assessment of patients’ needs and structure and capacity of services at local and national levels.

The current reality of health services suggests that, where specialist services are not well developed, we follow a minimum standard of care for those with ME/CFS that may rely on virtual health and app-technology as well as on a strong partnership with primary care.

The minimum desirable is one ME/CFS centre providing specialist services for a 10 million population. These services should also consider the characteristics of the population, including ethnic and cultural diversity.

Furthermore, we recommend that the specialist services should have the primary aim of confirming diagnosis and setting up treatment/ management plans, which should be agreed upon and carried out by a multidisciplinary team. The follow-up could use multi-media approaches, such as remote consultations or telemedicine, as appropriate according to local circumstances and medical regulations.

Local care for people with significant disability may need to be provided by primary care teams or local doctors with knowledge about ME/CFS, with support from the specialist services as appropriate. The option of smaller satellite clinics linked to the specialist service would provide full assistance for most and the “eyes” of a competent health professional, in support of remote consultations from the specialist for complex cases.

There is no suggestion that people with ME/CFS require more social support than people with other chronic diseases, and we are most certainly not implying that the disease is primarily psychological in nature. We are, though, very well aware that people with other chronic diseases, such as for example diabetes or multiple sclerosis, do not have the same problems of disbelief and lack of legitimisation experienced by people with ME/CFS. All people with chronic diseases need, and should be entitled to, social support, but few experience the same difficulty accessing it as people with ME/CFS.

Finally, it is important to consider that addressing the substantial needs of people with ME/CFS requires a multi-sectoral approach (Box 13), as well as ensuring that health services are organised and delivered effectively. Much of the needs of people affected by ME/CFS arise from their reduced ability to function in society and in more extreme cases on their total dependence on care for basic needs. Work, life, and education may be disrupted, with substantial economic and personal impacts on individuals and their families; lack of understanding and support, and often stigma, adding to the burden of physical suffering from symptoms.

It is extremely important to prioritize research and education of health professionals and others in society, so as to address the scientific and societal poor understanding of the scale of the problem faced.

Authors & Source:

Luis Nacul, François Jérôme Authier, Carmen Scheibenbogen, Lorenzo Lorusso, Ingrid Bergliot Helland, Jose Alegre Martin, Carmen Adella Sirbu, Anne Marit Mengshoel, Olli Polo, Uta Behrends, Henrik Nielsen, Patricia Grabowski, Slobodan Sekulic, Nuno Sepulveda, Fernando Estévez-López, Pawel Zalewski, Derek F H Pheby, Jesus Castro-Marrero, Giorgos K Sakkas, Enrica Capelli, Ivan Brundsdlund, John Cullinan, Angelika Krumina, Jonas Bergquist, Modra Murovska, Ruud C W Vermuelen, Eliana M Lacerda in Medicina 2021, 57(5), 510; [doi.org/10.3390/medicina57050510] 19 May 2021 (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)