ME/CFS: New practical guideline published

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Up to 80,000 people in Austria suffer from ME/CFS or myalgic encephalomyelitis/chronic fatigue syndrome. Although, the number of people affected by COVID-19 and post-infectious syndromes will continue to rise, there is a lack of public structures specialized in the care of the disease and the needs of affected patients. Scientists at MedUni Vienna, together with the Austrian Society for ME/CFS, have now developed a practical guideline based on scientific data that aims to improve care in the long term. For the first time, disease-specific limitations are taken into account so that diagnosis and treatment can take place in an environment that is suitable for ME/CFS patients. The guideline is now freely available to the public online at the EU research repository Zenodo.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe, chronic multisystemic disease. In this disease, the immune response, the autonomic nervous system, the vascular system and the cellular energy metabolism are often altered. It is usually triggered by viral and bacterial infections. As a result of the COVID pandemic, in which ME/CFS occurs as the most severe form of post-COVID syndrome (PCS), the number of people affected continues to rise. Many of those affected are unable to work, and it is estimated that 25% are housebound or bedridden. In the most severe cases, ME/CFS can lead to complete dependency on nursing care and artificial nutrition. In the worst cases, the disease and its consequences can be fatal.

The project Care for ME/CFS led by Eva Untersmayr-Elsenhuber’s team (Center for Pathophysiology, Infectiology and Immunology at MedUni Vienna) and the Austrian Society for ME/CFS (ÖG ME/CFS) builds on earlier joint research work that uses the experience of ME/CFS patients to create the basis for a ME/CFS-appropriate care situation. In the course of the project, which was funded by the OIS Center of the Ludwig Boltzmann Gesellschaft, those affected were actively involved in the research process. Integrating the lived experiences increases the quality of the research results and their relevance

It takes an average of five years to be diagnosed with ME/CFS

"In our project, we clearly see that people with ME/CFS, who suffer from a high disease burden and severe functional limitations, are losing their connection to the Austrian healthcare system," explains project lead Eva Untersmayr-Elsenhuber. A clear sign of the current lack of expertise is on average five-year it takes to be diagnosed as shown in the study.

"Thanks to the comprehensive surveys conducted as part of the project, we can clearly confirm the experience we have had as a patient organization for years: ME/CFS patients are overlooked in the health and social system at all levels," says Astrid Hainzl, deputy chairwoman of the ÖG ME/CFS. In addition to professional deficits, those affected also report a lack of recognition of the disease and stigmatization. Overall, these circumstances contribute to the very low quality of life in addition to the actual illness.

Starting points for healthcare professionals and politicians

The resulting practical guideline offers clearly defined starting points for healthcare professionals in terms of diagnostics, disease management and therapeutic approaches, as well as for the design of care services and nursing care. Furthermore, approaches for health care policy were defined based on the project results.

In cooperation with the Vienna University of Technology, this knowledge is currently being implemented in planning drafts for a care facility specializing in ME/CFS. "The Building Science research area is developing prototypes for ME/CFS medical centers in various sizes, which are specifically adapted to regional needs. There are already compact variants for inner-city locations (apartment building size), free-standing types for urban expansion (apartment block size), and a small type is currently being designed that is particularly suitable for district towns," reports architect Wolfgang Kölbl from TU Wien.

The practical guideline not only identifies current gaps in the care system, but also offers concrete proposals for closing them, which can be implemented quickly and efficiently.

Publication: Practical guideline Care for ME/CFS

Care for ME/CFS - Practical guideline for the care of ME/CFS patients (myalgic encephalomyelitis/chronic fatigue syndrome)
Hainzl A., Rohrhofer J., Schweighardt J., Hermisson J., Hoffmann K., Komenda-Lett M., Schlaff G., Schulz C., Stingl M., Thonhofer K., Untersmayr E. (2024): Medical University of Vienna/Austrian Society for ME/CFS, Vienna. DOI: 10.5281/zenodo.12091631
Download practical guideline:­o.12091631