News from Germany

rvallee said:
As a counterbalance, it seems that the state German health insurance posted on Instagram for ME/CFS day about the magical wonders of psychobehavioral therapies. Some have been removed following complaints, though not all.

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Fortunately, there isn’t just *one* state health insurance provider in Germany, but 93.
Taken together, the AOKs have the largest membership.
They are also independent of the state and are therefore referred to as statutory health insurance providers.

Still, it’s utterly and incomprehensibly stupid.
I suspect the AOK wants to be able to offload its sick pay recipients onto the pension fund more quickly, but who knows?
 
www.freitag.de

ME/CFS: „Ich bin nicht erschöpft – ich bin schwer krank“

ME/CFS ist eine chronische Krankheit, die den Betroffenen alles nimmt, was das Leben lebenswert macht. Wer am meisten darunter leidet, warum sie so wenig verstanden und erforscht ist und was den Betroffenen helfen würde. Eine Reportage
www.freitag.de www.freitag.de
(Paywalled)

ME/CFS: "I'm not exhausted — I'm seriously ill"
ME/CFS is a chronic illness that robs those affected of everything that makes life worth living. Who suffers most from it, why it is so little understood and researched, and what would help those affected.
A report by Elena Jaekel
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I‘m surprised to see an article about ME/CFS in Der Freitag.
I remember a video clip from a few years ago where the publisher Jakob Augstein was laughing about the notion of Long Covid.

Maybe that’s a positive sign that things are slowly changing.
 
Yann04 said:
There’s an exposition at the Berlin History of Medicine Museum “Horizontal: The sickbed and the world from the laying down position”. I think it opened two days ago?

Post (in german)

Presumably since it’s made a buzz in germanophone ME/CFS circles it atleast partially covers ME/CFS.
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There’s a livestream starting at 19:00 GMT+1:
For anyone interested who cannot attend the opening, we are offering a live stream (in German) with a digital tour of the special exhibition.
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On May 28, we invite you to the opening of the new special exhibition “Horizontal – Politics and Poetics from the Sickbed”

The exhibition explores how perception and our relationship to the world change when the bed becomes the center of one’s life. Through historical objects and archival materials, artistic works, activist perspectives, and the voices of those affected, a multifaceted picture emerges in the exhibition spaces, presenting the hospital bed not only as a site of medical intervention but as a space where fundamental questions of our present converge—questions of participation, care, solidarity, and the conditions for rest in an exhausted society.
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In the “Existieren oder Leben” talk from May 18th, Carmen Scheibenbogen said that they submitted another CD 19 antibody trial for the 2 Million ME/CFS Research Funding Programme& that they probably will also trial a CD 20 antibody as well.
She also said that if B Cell depletion wouldn’t work as well as they thought but they would be sure it would be an autoimmune disease still, she would start CAR T Cell Therapy with the Erlangen Team (they did the case series with Lupus etc) whom she knows very well -since she is originally from that group.
 
justlxsa said:


In the “Existieren oder Leben” talk from May 18th, Carmen Scheibenbogen said that they submitted another CD 19 antibody trial for the 2 Million ME/CFS Research Funding Programme& that they probably will also trial a CD 20 antibody as well.
She also said that if B Cell depletion wouldn’t work as well as they thought but they would be sure it would be an autoimmune disease still, she would start CAR T Cell Therapy with the Erlangen Team (they did the case series with Lupus etc) whom she knows very well -since she is originally from that group.
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But unfortunately she believes in subgroups and consequently all trials will be based on this assumption. She also claims we have a good understanding of the mechanisms of the illness. Unbelievable.
 
OrganicChilli said:
But unfortunately she believes in subgroups and consequently all trials will be based on this assumption. She also claims we have a good understanding of the mechanisms of the illness. Unbelievable.
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It looks like is their agenda in order to push for more grants on MABs trials, although its a bit unorthodox method (propagandising that we know good about a disease that we almost know nothing) thats not bad as far as they conduct proper trial without any ambiguity in the road. Both positive and negative results will help a lot the picture out whats going on.
 

Wissenschaftliche Bewertung von Methoden für den Nachweis von „Post-/Long-COVID-Syndromen“ und ihrer Überlappung mit „ME/CFS“
Stellungnahme der Deutschen Gesellschaft für Neurowissenschaftliche Begutachtung“ (DGNB)

Erbguth, F., Tegenthoff, M., Böwering-Möllenkamp, C., Schain, H., Hansen, C., Widder, B.

Abstract
Bei der Bewertung und beim Nachweis subjektiver Beschwerdekomponenten des Post-/Long-COVID-Syndroms (im Folgenden abgekürzt als PCS) und seiner Überlappung mit der Konstellation eines mit Muskelschmerzen einhergehenden entzündlichen Prozesses des Zentralnervensystems (myalgische Enzephalomyelitis) in Kombination mit einem Chronic Fatigue Syndrom (ME/CFS) wird in ärztlichen Bestätigungen und Gutachten teilweise auf diagnostische Verfahren Bezug genommen, die als objektivierender Beleg für das Vorliegen der Beschwerden in einem kausalen Zusammenhang mit einer vorausgegangenen SARS-CoV-2-Infektion dienen sollen. Dies gilt auch für Fatigue-betonte sogenannte „Post-Vac“-Syndrome als Impfschäden. Viele diesbezügliche Verfahren sind jedoch nicht ausreichend wissenschaftlich validiert, womit ihnen keine beweisende Bedeutung im Zusammengang mit einem PCS zukommt.

Die vorliegende Stellungnahme stellt in interdisziplinärer Erarbeitung den aktuellen wissenschaftlichen Erkenntnisstand zu den hierbei am häufigsten genannten Verfahren dar. Sie berührt ausdrücklich nicht die Diagnostik von spezifischen z.B. neurologischen Komplikationen nach SARS-CoV-2-Infektionen wie etwa Enzephalopathien, Guillain-Barré-Syndromen, zerebralen arteriellen oder venösen Thrombosen bzw. Gefäßverschlüssen. Hier ist die erkrankungsspezifische Diagnostik anzuwenden. Weiterhin wird auf die DGUV-Empfehlung für die Begutachtung von Post Covid verwiesen (Deutsche Gesetzliche Unfallversicherung, DGUV, 2025).

Summary Table
Übersicht über die in der Stellungnahme kommentierten diagnostischen Verfahren mit Evidenzbewertung

table.png
 
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