Vienna (OTS) - At the invitation of the Austrian Society of Neurology (ÖGN), the 1st interdisciplinary consensus meeting on the topic of “Postviral Conditions” took place, taking into account the classification of “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (ME/CFS). The aim of the ÖGN was to provide a current and evidence-based assessment of the situation in the sense of a To achieve consensus statements on genesis, diagnosis and treatment options for (possible) post-viral conditions.
It was important for the ÖGN to actively involve representatives of those affected in the entire process in order to find out their perspectives, concerns and needs. In addition, the health spokespersons of all political parties represented in parliament and representatives of the Austrian health insurance fund and the pension insurance company were invited to a final round of discussions. This was the first time in Austria that key interest groups, including those affected and their representatives, were involved in such a meeting.
It was opened and moderated by the President of the ÖGN, (Univ.-Prof. Dr.) Christian Enzinger. In his introduction he explained that the reason for this conference was summed up very simply: “It is necessary.”
In his contribution to the definition, Thomas Berger made it clear from the perspective of neuroimmunology that there is no scientific evidence that ME/CFS is an actual neuroimmunological disease. The term “myalgic encephalomyelitis” is therefore outdated and can most plausibly be classified in the group of “post-infectious conditions”, i.e. the subsequent conditions after (viral) infections. The lack of scientific evidence to date on the cause, development and treatment of MS/CSF is also due to the fact that the diagnostic criteria are outdated, unspecific and prone to misdiagnosis. A safe and unambiguous diagnosis according to modern scientific criteria and international standards is the ultimate prerequisite and guarantee for those affected that they are treated with the best possible individual symptomatic therapies to alleviate and improve their symptoms.
Jörg Weber described well-known post-viral conditions in neurology from the perspective of neuroinfectiology and emphasized the importance of understanding the pathophysiology in order to develop targeted therapeutic approaches.
The perspective of those affected was presented by Joachim Hermisson as the father of one of those affected and as a representative of the We & Me Foundation. The ignorance and lack of differentiation between ME/CSF and chronic fatigue are only parts of the helplessness. There are “invisible” patients who are completely helpless and in need of care. The goal is to create diagnostic options. Common goals should be: Comprehensive secondary competence centers: rigorous diagnostics, therapeutic approaches, clinical studies.
Michael Ströck, as the brother of two affected people and as the founder of the We&Me Foundation, added that there is too little research on ME/CSF - also due to too little financial support. He called for more public support and repeated the call for nationwide competence centers. He sees many good efforts and is grateful for the growing support from the various departments.
Diseases of the autonomic nervous system as a result of viral infections have been known for a long time, as the neurologist Walter Struhal explained . Autonomous centers always worked in a multidisciplinary manner with other specialist disciplines such as cardiology, psychiatry, gastroenterology, urology and others. As with many chronic neurological diseases, the focus is on individualized, patient-centered treatment of the symptoms in order to improve the quality of life.
A perspective from the resident specialist with a corresponding focus came from Michael Stingl , who also serves as an advisory board member for the We&Me Foundation. What is important in ME/CFS is the clear distinction between fatigue, which can occur as a symptom in many illnesses, and the post-exertional malaise typical of ME/CFS, where often banal stress leads to a significant deterioration of the condition over days. Due to the current lack of training and further education, this differentiation is often not made in clinical practice, which leads to stressful experiences in the healthcare system for those affected. A differential diagnosis is important; an active diagnosis of ME/CFS, including possible comorbidities, is possible despite all open questions. Contact points are important for those affected, as the care is currently absolutely inadequate.
The perspective of psychiatry came from Martin Aigner. The bio-psycho-social model has long been the basis for psychiatry. Psychological comorbidity figures could also be found in Long Covid syndrome. From a psychiatric perspective, possible differential diagnoses or comorbidities include anxiety disorders, depression, post-traumatic stress disorder and functional physical complaints, physical stress disorders and sleep disorders. From a therapeutic point of view, evidence-based multimodal therapy with medication, relaxation procedures, psychoeducation, cognitive behavioral therapy, physiotherapy, occupational therapy appears to make sense, until specific therapies for certain subgroups can be proven.
The general practitioner Susanne Rabady insisted on help from those affected. A single competence center could help research and is important, but does not yet provide widespread care. She focused on prevention, diagnostics, therapeutic approaches and support from the perspective of family doctors. Comprehensive differential diagnosis is already very important in general medicine, but the challenge with therapy is that there is hardly any evidence. When providing support, it is also important to take away patients' fears. There is still a lot to do, access to specialized knowledge is important, and a special interprofessional training opportunity is part of it. A multidisciplinary examination and workup could help patients and find out more about ME/CFS.
Alexander Rosenkranz represented the field of internal medicine. Post/Viral/Long Covid are heterogeneous clinical pictures without proven causality. There are different explanations for its development, most likely endothelial damage, autoimmunity or neoantigen. The frequency varies and will decrease sharply if herd immunity is maintained.
Eva Untersmayr-Elsenhuber , a representative of immunology, emphasized that the severity of an acute illness is not relevant for the development of a post-infectious illness. In ME/CFS patients, certain immune defects would be represented above average. Classifying patients into certain groups is essential for better and targeted treatment. Research funding is hardly available, but is important and should be expanded.
From the field of pain medicine , Thomas Weber reported that the most important thing is a multimodal approach to the anamnesis in order to be able to establish successful individualized therapy planning. This requires specialized centers involving various specialist groups, but unfortunately these do not currently exist in Austria. Investments must be made in research for experimental therapeutic approaches.
In his closing statement , Christian Enzinger , President of the ÖGN, was extremely satisfied with how the meeting went. However, it has also become clear that a statement must now be written that captures areas of agreement, but also of ambiguity and dissent. On the one hand, this is intended to define fields with a need for further research and, on the other hand, to highlight the need for action for decision-makers in politics and the healthcare system in order to optimize the care of those affected.
Other participants in the discussion were Rudolf Silvan (SPÖ), Josef Smolle (ÖVP), Günter Koderhold (FPÖ), Stefan Gara (NEOS) and Barbara Huemer (The Greens) as well as Valerie Nell-Duxneuner (ÖGK), Arshang Valipour ( City of Vienna/Klink Floridsdorf), Miroslav Krstic (PVA) and Kevin Thonhofer (representative of those affected - Austrian Society for ME/CFS).