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<div>Mataya ist 32 Jahre alt und leidet an ME/CFS (Myalgische Enzephalomyelitis / Chronisches Fatigue Syndrom). Was als Long Covid begann, entwickelte sich über Jahre durch Stress und medizinische Falschbehandlungen zur schweren neuroimmunologischen Multisystemerkrankung ME/CFS, für die es noch keine Heilung gibt. Offiziell diagnostiziert wurde es am Fatigue Centrum der Charité in Berlin. Doch Mataya bekam nur einen Abschlussbericht mit Empfehlungen zur Behandlung von Symptomen, davon viele, die Off-Label sind, also aus eigener Tasche bezahlen zu sind und wurde sich selbst überlassen.
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<div>Mataya war in Musikproduktion und Performancekunst tätig, kann aber mittlerweile nicht mehr arbeiten und muss den Großteil der Zeit liegend in einem abgedunkelten Raum mit schwerem Gehörschutz verbringen, denn Lärm und helles Licht verursachen schnell eine komplette Überforderung der Reizverarbeitung. Medienkonsum ist nur stark eingeschränkt und mit vielen Pausen möglich. Nahezu tägliche Schmerzen im ganzen Körper sind ständige Begleitung, sowie teils schwere Erschöpfung nach geringer Tätigkeit. Etwas konnte die Krankheit schon mit einer Vielzahl an Medikamenten und Nahrungsergänzungsmitteln abgemildert werden, doch einzig konsistente Ruhe und konsequentes Pacing der Aktivitäten, bis hin ins kleinste Detail wie Nahrungsaufnahme, Duschen und Zähneputzen sind notwendig, um eine weitere Verschlechterung zu verhindern und vielleicht sogar eine Verbesserung zu erreichen. Mataya leidet auch an diversen Begleiterkrankungen, die zahlreiche Nahrungsmittelunverträglichkeiten und teils schwere autonome Dysregulation (der Körper kann sich selbst nicht mehr richtig selbst regulieren) umfassen.
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<div>Krankenhäuser und nahezu alle anderen Gesundheitseinrichtungen sind komplett ungerüstet für die adäquate Behandlung von Menschen mit ME/CFS, wegen zu hoher Reizmenge auf den Stationen und fehlendem Wissen bei Ärzt*innen und Pfleger*innen. Daher ist nur eine Behandlung und Betreuung in den eigenen Vier Wänden möglich. Jedoch hat sich Matayas Wohnung in Berlin als schwer gesundheitsschädigend herausgestellt. Jahrelange Wohnungssuche hat aufgrund von Arbeitsunfähigkeit und Wohnungskrise zu keinerlei Lösung geführt.
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<div>Mataya ist nun mit der Hilfe von Freund*innen ins Heimatland Österreich zurückgekehrt, in der Hoffnung am Land in Oberösterreich, näher an Freund*innen und Mitgliedern der Herkunftsfamilie eine Stabilisierung erreichen zu können. Ersparnisse sind zur Gänze aufgebraucht. Mataya ist derzeit in einem Gästehaus untergekommen, in dem leider auch keine ideale Situation vorherrscht, um eine Stabilisierung zu erreichen.
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<div>Wir sammeln Geld, um Mataya einen Wechsel in eine bessere Unterkunft, einen vollständigen Umzug von Berlin, idealerweise in eine eigene Wohnung, zu ermöglichen. Auch essentielle Medikamente und Nahrungsergänzungsmittel sollen weiter bezahlt werden und eine sichere Versorgung mit Spezialnahrung, sowie Transporte zu Arztbesuchen gesichert werden. Ziel ist es, Mataya eine ruhige, stabile Umgebung zu geben, Pflegegrad zu beantragen und eine allumfassende Versorgung sicherzustellen.
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<div>Dafür brauchen wir eure Hilfe!
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<div>[ENGLISH]
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<div>Mataya is 32 years old and lives with ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome). What began as Long COVID gradually developed over several years into the severe neuroimmune multisystem disease ME/CFS due to ongoing stress and inappropriate medical treatments. There is currently no cure for this illness. The diagnosis was officially confirmed at the Fatigue Center of Charité Berlin. However, Mataya received only a final report containing recommendations for symptom management—many of them off-label treatments that must be paid for out of pocket—and was otherwise left to navigate this devastating disease alone.
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<div>Mataya used to work in music production and performance art, but is no longer able to work and must spend most of the time lying down in a darkened room while wearing heavy hearing protection, as noise and bright light can quickly overwhelm the nervous system's ability to process sensory input. Consumption of media is only possible in small doses and with breaks in between. Nearly daily pain throughout the body is a constant companion, along with at times severe fatigue from minor exertion. While a large number of medications and supplements have helped alleviate some symptoms, the only consistently effective strategy is strict rest and meticulous pacing of all activities, down to basic tasks such as eating, showering, and brushing teeth. This is necessary to prevent further deterioration and, hopefully, achieve some improvement. Mataya also lives with several associated conditions that include numerous food intolerances and, at times, severe autonomic dysfunction, meaning the body's automatic regulatory systems no longer function properly.
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<div>Hospitals and most other healthcare facilities are currently ill-equipped to provide adequate care for people with ME/CFS. Excessive sensory stimulation on hospital wards, combined with a widespread lack of knowledge about the illness among healthcare professionals, makes proper treatment extremely difficult. As a result, care can realistically only take place within a suitable home environment. Unfortunately, Mataya's apartment in Berlin turned out to be severely detrimental to health. Years of searching for alternative housing have led nowhere due to the combination of inability to work and the ongoing housing crisis.
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<div>With the help of friends, Mataya has now returned to Austria, the country of origin, in the hope that life in a quieter rural area of Upper Austria, closer to friends and members of the extended family, may provide the conditions necessary for stabilization. All savings are exhausted. Mataya is currently staying in a guesthouse, but the environment there is also not ideal for achieving the level of stability required by this illness.
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<div>We are raising funds to help Mataya move into more suitable accommodation, cover the costs of a complete relocation from Berlin, and ideally secure an independent apartment. The funds will also help pay for essential medications and supplements, ensure reliable access to specialized nutrition, and cover transportation to medical appointments. The goal is to provide Mataya with a quiet and stable living environment, apply for an appropriate level of care support, and establish comprehensive long-term care and assistance.
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<div>For this, we need your help.
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Sarah Filipova

Daniel Pérez Zafra

Yevhen D.

Hari Dimoshi

Anonymous

Serena Valeruz

Tony Wagner

xm xm

Phil La Noiraude

Michael Kumpl

Greta Schmerberg-Dávila

Arne Grashoff

Sabrina Lehner

Elio Means-Seidl

Sophia Helene Hochedlinger

Mataya's ME-CFS Emergency Fund

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Just €814€ to go! Make an impact.

Mataya's ME-CFS Emergency Fund

Just €814 to go!
Make an impact.