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Kongress – Gespräche über LongCOVID Zum Inhalt springen Am zweiten Tag gab es bereits früh morgens einen interessanten Track zu Gesundheitsökonomie und Epidemiologie . Der Track begann jedoch um 8:30 Uhr und das ist weder nerd- noch familienfreundlich. 🙂
So war der Start in den zweiten Kongresstag der Vortrag mit dem Titel Wie kann die Politik die Gesundheitsversorgung der Bevölkerung verbessern? vom FDP-Politiker Robert Martin Montag. Bereits in seinen ersten Worten kündigte er an, nichts zum eigentlichen Thema zu sagen. Dafür nahm er sich dann auch deutlich mehr als die geplanten 15 Minuten Zeit. Inhaltlich ging es um die Erfolge, die die FDP im Landtag angeblich erzielt hat.
Dr. med. Sandra Stengel: Rolle der Hausarztpraxis in der Versorgung von Long-/ Post-COVID – ein Mehrperspektivenblick Frau Stengel ging in ihrem Vortrag auf die Hausarztpraxen ein und so gingen auch viele Hände hoch, als nach Hausärzt:innen im Publikum gefragt wurde. Sie verwies auf
als Informationsquellen. Dabei legte sie insbesondere einen Schwerpunkt auf die S3-Leitlinie zur Müdigkeit.
Neben weiteren Punkten diskutierte sie schließlich drei Fallbeispiele. Hier war deutlich die Bandbreite an Symptomen und Behandlungen zu sehen. In zwei der Fälle konnten Erfolge erzielt werden. Ein Lehrer kehrt in den Beruf zurück und eine Frau ist wieder in der Lage mehrere Kilometer spazieren zu gehen und scheint sich generell zu verbessern. Lediglich im letzten Fall war es so, dass am Ende die Behandlung abgebrochen wurde. Dies lag im Wesentlichen daran, dass die Patientin bettlägerig war und der Großteil der Kommunikation nur über Dritte lief. Hier wäre etwas wie die Jenaer WATCH-Studie hilfreich. Dort fährt ein Bus in die ländlichen Regionen und betreut die Menschen vor Ort.
Auf dem Kongress traf ich auch eine Teilnehmerin an der WATCH-Studie. Sie erzählte mir stolz von dem Bus, der in ihrem Ort hielt, wie sie an der Studie teilnahm und zeigte mir das Wearable, was sie im Rahmen der Studie bekam.
apl. Prof. Dr. phil. Christian Puta: PEM verstehen – Implikationen für individuelle Rehabilitationen PEM war ein Thema, an dem sehr viele der Teilnehmer:innen ein Interesse haben. Ich wurde auch auf Mastodon direkt darauf angesprochen.
PEM steht für Post-Exertional Malaise. Wenn man das Wort auseinandernimmt, finden sich drei Bestandteile
Post: nach, danach Exertion: Verbrauch von Energie Malaise: Unwohlsein Man könnte es als Unwohlsein nach dem Verbrauch von Energie beschreiben. Im Deutschen wird häufig von Zustandsverschlechterung nach Belastung gesprochen.
Christian Puta erklärte zu Beginn seines Vortrages den Begriff des Pacings. Da dies ein zentrales Konzept ist. Im Sport wird beispielsweise die Zeit, die pro Kilometer benötigt werden, als Pace bezeichnet. Das ist also der umgekehrte Wert zur Geschwindigkeit (km pro Zeit). Das Ziel ist nun, bei den betroffenen Personen eine solche Pace zu finden, die eben kein PEM, also einen Crash, auslöst.
Die Studie Characterizing long COVID in an international cohort: 7 months of symptoms and their impact von Davis HE, Assaf GS, McCorkell L, et al. gibt einen Hinweis auf die Auslöser von PEM. Demnach sind das hauptsächlich Stress und körperliche Übungen. Hier gab es auch nochmal einen Verweis auf Reha-Maßnahmen. Dort ist sehr häufig Sport eine der oft genutzten Maßnahmen.
Ein weiterer Schwerpunkt war es, ein Verständnis für die Energiegewinnung und -nutzung im Körper zu erhalten. Puta erklärte die sehr kurzfristige Zurverfügstellung von ATP über Kreatinphosphat sowie die anaerobe sowie aerobe Glykolyse. Menschen mit Post-COVID können sich häufig kurzfristig belasten, aber eben nicht langfristig. Dies ist ein Hinweis, dass es Probleme bei der aeroben Glykolyse gibt.
Beim Umgang mit PEM wurden vier Komponenten genannt:
Energiequotient: Nach einer persönlichen Einschätzung soll die verfügbare Energie auf einer Skala von 0 bis 100 in der letzten Woche angegeben werden. Weiterhin soll auch die verbrauchte Energie angegeben. Es wird dann der Quotient aus verbrauchter und verfügbarer Energie berechnet. Im Allgemeinen sollte es so sein, dass verfügbare Energie größer oder gleich der verbrauchten ist. Ist letztere größer, besteht die Gefahr von PEM oder eines Crashs. Energierahmen: Der Energierahmen hängt von Faktoren wie Stress, Körperlage und anderen ab. Tägliche Routinen: Beim Umgang mit PEM sollte auf viel Erholung geachtet werden, Tätigkeiten sollten langsam ausgeführt werden und diese sollten über den Tag verteilt werden. Erholungs- und Belastungsmonitoring: Dabei sollte der Puls, die BORG-Skala und der MET-Wert beachtet werden. Der Puls könnte über Fitnesstracker oder ähnliche Geräre erhoben werden. Rechner für den Maximalpuls existieren ebenso. Die BORG-Skala ist ein Maß für die Anstrengung, die man selbst wahrnimmt. MET steht für metabolisches Äquivalent . Die englische Wikipediaseite hat eine gute Tabelle dazu. Das Pacing, was hier vorgeschlagen wurde, umfasst mehrere Phasen. Im Vortrag wurde jedoch nur eine besprochen. Es beginnt mit einer Atemübung. Vorgemacht wurde das Cyclic Sighing. Allerdings eignen sich auch andere. Dabei ist es wichtig, dass die Ausatemphase länger als die Einatemphase ist. Danach folgt eine sechs- bis zehnminütige Übung. Diese ist immer in Sequenzen von 30 Sekunden Übung und zwei Minuten Erholung aufgeteilt. Diese sollte bei 50% der maximalen Herzfrequenz erfolgen. Der Rechner zeigt diese Werte mit an. Beendet wird die Pacing-Phase mit einer Meditation.
Insgesamt sollte die erste Phase bei einer Herzfrequenz von 50% des Maximums sein. Die BORG-Skala sollte bei 6-8 liegen und der MET-Wert bei 2,5. Diese Phase wird 3–6 Wochen so durchgeführt. Wenn das toleriert wird, kann man das Training langsam intensivieren. Dabei liegt die Betonung wirklich auf langsam .
In einer späteren Session wurde auch nochmal betont, dass es sehr viele Long-COVID-Patient:innen gibt, die sehr motiviert sind und zu viel wollen. Daher besteht die Aufgabe recht häufig darin, das Tempo rauszunehmen.
Weiterer Kongress Den Rest des Tages habe ich dann mit Gesprächen verbracht. Hier und da war ich auch noch in Vorträgen und bei der Postersession. Mit einigen Leuten habe ich mich zu späteren Terminen vereinbart. Daher besteht gute Hoffnung, dass die Website weiter mit Inhalten gefüllt werden wird.
Insgesamt war der Kongress wieder eine gute Möglichkeit, sich mit Fachleuten auszutauschen und mit Betroffenen zu sprechen. Ich hoffe, dass ich auch im nächsten Jahr wieder teilnehmen kann.
Am 24.11. und 25.11.2023 findet in Jena der 2. Long-Covid-Kongress statt. Ich habe die Chance ergriffen und nehme wieder daran teil. Unten findet ihr meine Eindrücke vom ersten Kongresstag.
Der Tag startete am Volkshaus bei eher mäßigem Wetter. Später sollte es sogar noch schneien.
Prof. Folke Brinkmann: Long COVID bei Kindern und Jugendlichen – wie ist der Stand der Forschung? Nach der Anmeldung ging es innen mit Frau Prof. Dr. med. Folke Brinkmann. Sie gab einen Überblick zum Stand der Forschung bei Long COVID bei Kindern und Jugendlichen. Demnach wird bei Kindern eine Erkrankung als Post COVID bezeichnet, wenn
es eine Infektion mit dem SARS-CoV-2-Virus gab, diese mindestens 2 Monate zurück liegt, eines oder mehrere Symptome vorliegen, die es vorher nicht gab und diese die Person relevant beeinträchtigen. Die Häufigkeit der Krankheit (Prävalenz) wird in verschiedenen Studien sehr unterschiedlich angegeben und schwankte zwischen 1 und 50 %. Sie bezog sich dann auf Zahlen aus Dänemark. Diese gaben die Prävalenz mit Werten zwischen 2,5 und 3,5 % an. In der Diskussion wurde sie dann später gefragt, wie hoch sie die Werte jetzt schätzen würde und gab Werte zwischen einem und zwei Prozent an.
Die betroffenen Kinder leiden zumeist an Fatigue, Kopfschmerzen und Appetitlosigkeit. Allerdings wurden auch weitere Beschwerden genannt.
Sie ging dann auf einen Faktor namens Long Lockdown ein. Demnach gab es auch nicht-infizierte Kinder, die ähnliche Symptome hatten. Diese wurden vermutlich durch das Fehlen des Soziallebens ausgelöst. Hier ist zu beobachten, dass diese verschwinden. Die „echten“ Long-COVID-Fälle bleiben.
Bei etwa 75 % der Kinder und Jugendlichen gehen die Symptome innerhalb eines Jahres zurück und bei nur wenigen bleibt das. Daher wurde die Begleitung der Betroffenen als eine der Hauptaufgaben genannt.
Prof. Dr. med. Uta Behrends: Long COVID und ME/CFS bei Kindern und Jugendlichen Uta Behrends war bei Video zugeschaltet und gab in ihrem Vortrag einen Einblick in die Thematik. So sah es so aus, als ob ME/CFS erst bei Jugendlichen ab 17 Jahren ein großes Thema wird. In den jüngeren Altersgruppen gab es recht geringe Zahlen. Später ging sie noch auf das Projekt COVID Kids Bavaria ein.
ME/CFS ist ein Grund für häufige und längere Abwesenheiten in der Schule. Die Lebensqualität der Betroffenen ist geringer und es gibt Anzeichen auf verkürzte Lebenserwartung. Als Grund wurden hier Kreislaufprobleme, Krebs und Suizid genannt.
By Pots Syndrome – <a rel=“nofollow“ class=“external free“ href=“https://www.flickr.com/photos/193598842@N06/51347747471/“>https://www.flickr.com/photos/193598842@N06/51347747471/</a>, CC BY-SA 2.0 , Link
Das Thema POTS (Posturales Tachykardiesyndrom) war ihr noch wichtig. Hier geht es um Menschen, die Problem bei Lageänderungen haben. Das heißt, sie stehen auf und der Kreislauf macht schlapp.Das Foto oben ist von der englischen Wikipedia-Seite zu POTS und zeigt ein ähnliches Bild, was auch zum Vortrag präsentiert wurde.
Als Maßnahmen wurden die 3P (Pacing, Planen, Priorisieren), Schlafhygiene und Atemübungen empfohlen.
Prof. Dr. med. Georg Schomerus: Stigmatisierung und Psychologisierung bei PCS Prof. Schomerus führte in das Thema Stigma ein. Es gibt wohl einen Stigma-Prozess. Der führt von der Wahrnehmung und Benennung einer Normabweichung zu einer Zuschreibung von negativen Stereotypen. Schließlich reagieren Menschen darauf negativ und diskriminieren die Person oder Gruppe. Anhand eines Beispiels zeigte er, dass dies schon bei Post COVID zutrifft.
Betroffene wurden zu Stigmatisierung befragt und empfanden die meiste Stigmatisierung durch Mitarbeiter:innen des Gesundheitswesens.
Viele der Punkte, die im Vortrag genannt wurden, sind zunächst Theorien und es werden Studien dazu stattfinden, um mehr zu erfahren.
Weiteres Ich habe dann noch ein paar mehr Vorträge besucht. Allerdings habe ich zu wenig Mitschriften und werde vielleicht später dazu berichten.
Einige Zeit habe ich benutzt, um mit Leuten zu sprechen. Da gibt es vielleicht in der nächsten Zeit noch mehr zu berichten. 🙂
Das Long-COVID-Syndrom beschäftigt neben Betroffenen und Ärzt:innen auch die Politik. Der Ministerpräsident des Freistaats Thüringen , Bodo Ramelow, war Schirmherr beim 1. Long-COVID-Kongress in Jena und ich hatte im Nachgang die Gelegenheit, ein Gespräch mit ihm zu führen.
Im Interview reden wir über seine ersten Kontakte mit dem Syndrom. Denn sowohl innerhalb der Staatskanzlei als auch bei politischen Aktivitäten kam der Ministerpräsident mit dem Krankheitsbild in Kontakt. Daneben geht es über Fragen der Unterstützung für Betroffene, Stärkung des Informationsflusses und Förderung der Forschung.
Im Gespräch erwähnt Herr Ramelow, dass die Spendenaktionen für Leukämie zu einem Bewusstsein für die Krankheit geführt haben. Hier würde ich mir wünschen, wenn es ähnliche Aktionen auch für Long-COVID gäbe und so das Bewusstsein für das Syndrom gesteigert wird.
Shownotes Am 18. und 19.11.2022 fand im Volkshaus in Jena der 1. Long-Covid-Kongress statt. Auf dem Kongress gab es wissenschaftliche Fachvorträge, ein Symposium für Betroffene sowie Postersessions.
In einem längeren Monolog versuche ich hier meine Eindrücke zusammenzufassen und soweit es geht, Vortragsinhalte wiederzugeben.
In vielen Vorträgen ging es immer mal wieder um die Defintionen von Long COVID. Dabei nahmen viele Bezug, auf die Definition der WHO:
Post COVID-19 condition, also known as long COVID, occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19. Symptoms last for at least 2 months and cannot be explained by an alternative diagnosis.
https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition Daneben gibt es noch die Definition der NICE und ein Definitionsversuch für Post-Acute COVID-19 Sequelae (PACS). Nach meinem Eindruck wird meist die der WHO verwendet.
Shownotes Am 18. und 19.11.2022 findet in Jena der 1. Long-COVID-Kongress statt. Die Tagung wird von Univ. Prof. Dr. med. Martin Walter und Dr. med. Daniel Vilser geleitet und richtet sich sowohl an Fachleute wie an betroffene Personen. Das Programm ( lokale Kopie ) besteht aus Vorträgen internationaler Expert:innen, einer Podiumsdiskussion mit politischen Akteuren wie auch einem Programm für betroffene Personen.
Im Rahmen des Interviews habe ich mich mit Herrn Walter über das Krankheitsbild LongCOVID sowie über den Kongress unterhalten. Wenn ihr das noch rechtzeitig hört und Interesse an einer Teilnahme habt, könnt ihr euch noch Online anmelden .