News from Germany

Therefore, rehabilitation adopts a bio-psycho-social framework, though resistance from patients against acknowledging psychological factors is common.
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Really putting it out there in writing that they don't care about consent. They'll impose their beliefs no matter the outcomes, regardless of evidence, just because they can. Because it's easy to throw millions of people into the trash.
This controversy has impacted patients’ willingness to start or complete rehabilitation.
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Just total bullshit. They keep hiding their mistakes behind their mistakes, total dereliction of duty.
This contrasts with previous rehabilitation literature, highlighting the importance of expectation management. Realistic patient education may prevent nocebo effects and help maximize placebo-related benefits.
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Just making stuff up to excuse their failure while making fraudulent claims of effective treatments when they have no such thing because they're not even trying.
Most PCS patients gradually improve within 18 months, yet many require rehabilitation for successful reintegration.
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Probably the only true statement in this, and it completely invalidates everything they claim as there is no evidence to support their claim that rehabilitation helps, when it likely produces worse outcomes. Absolutely delusional. A whole-ass profession incapable of learning basic things if it doesn't conform with their expectations. Failure by design, of choice, intentional.
 

Google Translated website.

863,000 people affected! Government considers abolishing care level 1​

The nursing care funds are empty, and the government has to cut costs. Now the Minister of Health is considering abolishing the lowest level of care.
AI Summary:

Due to a projected €2 billion funding shortfall in Germany’s statutory long-term care insurance for 2026, the government is considering abolishing Care Level 1 as a cost-cutting measure.

Care Level 1 currently supports about 863,000 people, providing them with a €131 monthly allowance for basic help (e.g., household aid, family caregivers), plus subsidies for home modifications and emergency systems. Eliminating this level could save the government around €1.8 billion annually, according to economic estimates.

The proposal is being discussed within the ruling coalition (CDU/CSU and SPD), and a working group is reviewing the broader care system. A formal report is expected by mid-October. Politicians like CDU’s Sepp Müller stress the need to reduce non-wage labor costs to protect jobs and the economy, and say all cost-saving options should be considered.
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Landmark Rulings Recognize Long Covid and ME/CFS as Physical Illnesses — Not Psychological Disorders

German Courts Open Path to Disability Rights for Post-Viral Patients Following Breakthrough Legal Decisions

Two German social courts have ruled that Long Covid and ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) are not psychological disorders — a significant legal milestone for those affected by post-viral illnesses. These rulings challenge previous classifications and could pave the way for broader recognition of disability rights for thousands.

One of the key cases was won by 34-year-old Pia Lingen (name changed) from Teltow, who developed ME/CFS following a COVID-19 infection in late 2021. Despite a complex array of symptoms — including exhaustion, cognitive impairment, sleep issues, asthma, and circulatory problems — the local social welfare office had only recognized a degree of disability (GdB) of 40, insufficient for full legal protections.

However, the Social Court of Potsdam overturned that decision and granted her a GdB of 50, officially recognizing her as severely disabled. This qualifies her for vital support, including additional leave, tax benefits, early retirement, and stronger protection from dismissal — especially important given her fluctuating condition.

The court emphasized that ME/CFS is not a mental illness, directly opposing the classification previously used by the social welfare authority. Instead, it should be assessed under the category for multisystem diseases, which rely on individual functional impairment rather than rigid diagnostic tables.

Attorney Friedrich Alexander Barthel, who represented Lingen, called the decision a “breakthrough” with potential precedent-setting impact. He noted the court’s insistence on a “holistic assessment” of medical records — including those from treating physicians — rather than relying solely on brief evaluations by state-appointed medical experts, which often miss the fluctuating nature of these illnesses.

These rulings may lead to broader legal recognition of post-viral conditions in Germany and signal a shift in how disability rights are granted to people with complex, often misunderstood diseases like ME/CFS and Long Covid.
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www.berliner-zeitung.de

Long Covid und ME/CFS sind keine psychischen Erkrankungen: Was das für Betroffene bedeutet

Per Klage setzt eine Frau aus Brandenburg die Anerkennung ihrer Schwerbehinderung durch. Das Urteil dürfte auch anderen Erkrankten helfen – und es ist nicht das einzige.
www.berliner-zeitung.de www.berliner-zeitung.de
 
www.faz.net

Hessen: Mehr Geld und Aufklärung für Long-Covid-Patienten

Der Hessische Landtag diskutiert über bessere Diagnostik und intensivere Forschung. Das Land will ein Versorgungsprojekt unterstützen.
www.faz.net www.faz.net

Translated website.


AI Summary
Hessen: More Support for Long Covid Patients

On October 1, 2025, the Hessian state parliament discussed improving care for Long Covid patients, particularly those suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which affects over 800,000 people in Germany. Due to difficulties in diagnosis, many patients—including children and adolescents—experience severe symptoms, ranging from extreme fatigue to pain from light touch.

At the initiative of the SPD and CDU, the state government plans to fund a digital care project (AmRe-LoCo) in the Lahn-Dill district with nearly €500,000. The proposal also includes awareness campaigns for doctors and institutions, aiming for better recognition of ME/CFS as a physical illness and for insurance providers to cover off-label treatments until approved medications become available.

Further measures include creating informational materials for pediatricians and youth services, and increasing research efforts. SPD and FDP representatives emphasized the urgent need for scientific studies and therapies, while the Greens called for a nationwide network of specialized clinics. Criticism came from the AfD, demanding more concrete support for individuals harmed by COVID-19 vaccinations (Post-Vac), and accused the government of neglecting them.
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The german Ärztezeitung wrote an article about a small post-vac study by Susanne Döpfmer.
www.aerztezeitung.de

Beschwerden nach COVID-Impfung: Das denken Hausärztinnen und Hausärzte über Post-Vac

Nicht wenige Hausärztinnen und Hausärzte halten Post-Vac für eine eigene Krankheitsentität. Egal, wie man dazu steht – ein Beratungsanlass sind Beschwerden nach der COVID-19-Impfung in nahezu jeder Praxis.
www.aerztezeitung.de www.aerztezeitung.de

Link to translated article

AI Summary in English:

DEGAM Congress: GPs' Views on Post-Vac Syndrome After COVID Vaccination

A recent survey among general practitioners (GPs) in six German research networks revealed that a significant number of doctors consider Post-Vac—symptoms following COVID-19 vaccination—as a distinct clinical condition. According to the results, 43% of respondents believe Post-Vac is a separate disease entity, and 36% reported having suspected it in their own practice.

The study, presented by Dr. Susanne Döpfner from Charité – Universitätsmedizin Berlin at the DEGAM Congress 2025, aimed primarily to test the feasibility of larger multi-network projects. The topic remains controversial, as Post-Vac symptoms are often vague and varied—commonly fatigue or cardiac-related complaints—and are frequently self-reported by patients.

Despite mentions of vaccine-related symptoms in Germany’s 2024 Long COVID guidelines, the Paul Ehrlich Institute states that there is no officially recognized diagnosis of Post-Vac and no scientifically proven causal link between COVID-19 vaccination and these symptoms.

The data came from 156 participating practices, with 85 physicians providing insights on Post-Vac. On average, they reported about ten patients who believed they had Post-Vac. While patients often suspected fatigue to be related, doctors more frequently linked the complaints to cardiac symptoms.

The results also showed generational differences: younger doctors (average age 45) were more skeptical of Post-Vac, often attributing the symptoms to psychosomatic or psychiatric causes. Older doctors were more likely to consider it a real condition.

Due to the small sample size, Döpfner urged caution in interpreting the findings. However, she emphasized that regardless of one’s stance on the legitimacy of Post-Vac, symptoms following COVID vaccination are a frequent reason for consultations in almost every GP practice.
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This is the study abstract, found via the DEGAM website here:

Die hausärztliche Perspektive auf Post-COVID-ähnliche Symptome nach einer COVID-19-Impfung – Ergebnisse einer Umfrage in sechs deutschen Forschungspraxennetzen​

S. Döpfmer1, C. Kretzschmann2, K. Mergenthal3, M. Pentzek4, A. Polanc5, K. Voigt6

1 Charité - Universitätsmedizin Berlin, Institut für Allgemeinmedizin, Berlin, Berlin, Deutschland
2 Universitätsklinikum Würzburg, Institut für Allgemeinmedizin, Würzburg, Bayern, Deutschland
3 Goethe-Universität Frankfurt am Main, Institut für Allgemeinmedizin, Frankfurt, Hessen, Deutschland
4 Universität Duisberg-Essen, Medizinische Fakultät, Institut für Allgemeinmedizin, Gruppe Primärversorgungsforschung, Essen, Nordrhein-Westfalen, Deutschland
5 Universitätsklinikum Tübingen, Medizinische Fakultät der Eberhard Karls Universität Tübingen, Institut für Allgemeinmedizin und Interprofessionelle Versorgung, Tübingen, Baden-Württemberg, Deutschland
6 Medizinische Fakultät und Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Selbständiger Bereich Allgemeinmedizin, Dresden, Sachsen, Deutschland

Hintergrund

Eine Richtlinie des Gemeinsamen Bundesausschusses (G-BA) aus dem Jahr 2023 stellt Hausärzt*innen (HÄ) in den Mittelpunkt der Versorgung von Patient*innen mit Long-/Post-COVID, einschließlich jener, deren Symptome nach einer COVID-19-Impfung („Post-Vac“) auftraten. Bisher gibt es keine Studien, die die Beratungsanlässe von Patient*innen mit dem Verdacht auf „Post-Vac“ oder die Perspektiven der HÄ zu diesem Thema untersuchen.

Zielsetzung/Fragestellung

Die „COVID_ShortForm_GP“-Studie war eine Pilotstudie mit primären Fragestellungen zur Prävalenz des Post-COVID-Syndroms in der Primärversorgung und der Einstellung der HÄ dazu. Das Ziel einer Teilstudie war es, darüber hinaus die Erfahrungen von HÄ in der Versorgung von Patient*innen mit dem Verdacht auf „Post-Vac“ zu untersuchen. Die sekundären Forschungsfragen der „Covid-Shortform-GP“-Studie konzentrierten sich daher auf die Einschätzung der HÄ, ob „Post-Vac“ eine eigenständige Erkrankung darstellt, sowie auf die berichteten Beratungsanlässe.

Material & Methoden

Die „COVID_ShortForm_GP“-Studie wurde in sechs Forschungspraxennetzen der „Initiative Deutscher Forschungspraxennetze“ mit 18 universitären Instituten sowie 156 Hausarztpraxen durchgeführt. Im Rahmen des über REDCap bereitgestellten Online-Fragebogens beantworteten die HÄ drei Fragen zu dem Thema "Post-Vac" entsprechend den sekundären Fragestellungen dieser Teilstudie. Die Analyse erfolgte deskriptiv-explorativ; Freitextantworten wurden mittels Inhaltsanalyse kategorisiert.

Ergebnisse

42,9 % der teilnehmenden HÄ betrachteten „Post-Vac“ als eine eigenständige Erkrankung. Mehr als 90 % hatten bereits Patient*innen, die annahmen, an „Post-Vac“ zu leiden; 36,1 % der HÄ hatten Patient*innen, bei denen sie selbst „Post-Vac“ vermuteten. Zu den typischen berichteten Beratungsanlässen gehörten kardiale Beschwerden, Fatigue, muskuloskelettale Schmerzen und neurokognitive Beeinträchtigungen.

Diskussion

HÄ betreuen Patient*innen mit Beratungsanlässen, die sie selbst oder die Patient*innen mit „Post-Vac“ assoziieren. Unsere Studie erhebt keinen Anspruch auf Repräsentativität, gibt aber erste Hinweise, dass die Mehrheit der HÄ damit konfrontiert sein könnte.

Take Home Message für die Praxis

HÄ sind in der Versorgung von Patient*innen mit Verdacht auf “Post-Vac“ mit Unsicherheit auf dem Boden fehlender Evidenz konfrontiert. Im Umgang mit Betroffenen haben daher die hausärztlichen Kernaufgaben Bedeutung: vorurteilsfreie Anerkennung der Symptome, kontinuierliche Betreuung, Berücksichtigung sozialer Aspekte sowie Schutz vor Unter-/ Über- und Fehlversorgung.
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The results also showed generational differences: younger doctors (average age 45) were more skeptical of Post-Vac, often attributing the symptoms to psychosomatic or psychiatric causes. Older doctors were more likely to consider it a real condition.
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A clear sign of the regression medicine has suffered in recent decades with the creep of psychosomatic ideology. It's why despite actual progress made, we have pretty much fallen back.
Despite mentions of vaccine-related symptoms in Germany’s 2024 Long COVID guidelines, the Paul Ehrlich Institute states that there is no officially recognized diagnosis of Post-Vac and no scientifically proven causal link between COVID-19 vaccination and these symptoms.
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Why can't they apply this reasoning to psychosomatic stuff? It's even less plausible, even though we know for a fact that vaccines do cause symptoms in some people, so what the hell are they even saying here?
 
rvallee said:
Why can't they apply this reasoning to psychosomatic stuff? It's even less plausible, even though we know for a fact that vaccines do cause symptoms in some people, so what the hell are they even saying here?
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My data system doesn’t have a category that says red cars. Because the there are no red cars in the system, I can confidently say that red cars don’t exist.
 
AI Summary:
Germany’s Incomplete Covid Data: Unclear Vaccination Status for Most Deaths

Lack of Reliable Data

Five years after the outbreak of the COVID-19 pandemic, Germany’s Health Ministry has, for the first time, released data on the vaccination status of those who died from the virus. However, these statistics, obtained by the NZZ, reveal serious deficiencies: in more than 60% of the 187,000 COVID-related deaths recorded between 2020 and 2024, the vaccination status was not documented.

Misleading Public Statements

Of the recorded deaths, approximately 39,000 were unvaccinated and 33,000 had received at least one vaccine dose. However, almost all the unvaccinated deaths (around 36,000) occurred in 2020, before vaccines were available. This implies that only about 3,000 unvaccinated deaths occurred after the vaccine rollout began—a number too small to support claims about a “pandemic of the unvaccinated.” Despite this, politicians like President Frank-Walter Steinmeier and former Health Ministers Karl Lauterbach and Jens Spahn publicly blamed the unvaccinated for the strain on hospitals, basing their statements on unverifiable data.

Criticism from the Scientific Community

Experts have heavily criticized the reliability of the figures. Epidemiologist Klaus Stöhr pointed out that the data allows for almost any interpretation and described Germany’s pandemic data collection as “at best incomplete.” The inconsistency is particularly striking considering that more people died after 2020, despite vaccines and less aggressive virus variants.

Systemic Failures in Data Collection

Germany’s outdated infrastructure contributed significantly to these issues. Until the end of the pandemic, many local health offices still transmitted vital statistics by fax. Reporting paused on weekends and holidays, and data on ICU patients' vaccination status was delayed for months after regulations required it. In contrast, countries like Denmark and the UK had already ended their pandemics by the time Germany began collecting this information.

International Studies Excluded Germany

Germany’s failure to provide reliable data meant that international studies, such as one published in The Lancet, could not include it in their analysis of vaccine effectiveness. The researchers noted that while Germany had gathered data, it was not made available for evaluation. The Robert Koch Institute attributed this to inconsistent data collection by local health departments.

Consequences Beyond the Pandemic

This data deficit is not limited to COVID-19. Germany’s reporting on other health threats to the EU’s ECDC is also incomplete. The issue became particularly severe in early 2021 when rare but serious side effects from the AstraZeneca vaccine—such as brain thromboses—emerged. Germany lacked the data to assess the risk and had to rely on statistics from countries like the Netherlands and Denmark.

Calls for Accountability

Experts, including virologist Alexander Kekulé, warn that such data gaps hinder the detection of drug side effects and environmental health risks. Politicians like FDP’s Wolfgang Kubicki have called for a parliamentary investigation, arguing that key legal decisions during the pandemic were made based on incomplete or misleading information.

Conclusion

Germany’s failure to adequately track and report critical health data during the COVID-19 pandemic has raised serious questions about the legitimacy of its public health messaging and the effectiveness of its political decision-making. The lack of transparency and professionalism in data collection may have had far-reaching consequences for public trust and policy outcomes.
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www.nzz.ch

Politiker gaben Ungeimpften die Schuld – aber die Daten erzählen eine andere Geschichte

Impfstatus ungeklärt: Wie Deutschland bei Corona-Daten versagte
www.nzz.ch www.nzz.ch
 
The big german magazine DER SPIEGEL features a long interview with parents of a pwME. The father is also coauthor of this excellent care guide:
ME/CFS Science Blog

Thread 'Austria: Resource for severe ME/CFS in German and English: Hermisson et al. Pflegeanleitung für schwer- und schwerstkranke ME/CFS-Patient:innen'

Yann04 said:
Austrian MEA and Primary Care Med Uni Wien have published a “guide” on how to improve the situation for pwSevereME/CFS. (All in German)

https://public-health.meduniwien.ac...edicine/PDFs/2025.8_Pflegeanleitung_MECFS.pdf
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This might warrant its own thread because it has a lot of info and advice that is not available in other formats.

I made this thread about it on social media:


1) There's a new document with care advice for patients with (very) severe ME/CFS.
It was published by the Austrian...
  • Like


www.spiegel.de

(S+) Tochter mit ME/CFS: »Unsere Tochter verträgt kein Licht. Wir pflegen sie deshalb in Dunkelheit«

Sie kann nicht sprechen, erträgt keine Geräusche, keine Menschen – Milena, 22, hat ME/CFS. Ihre Eltern Sabine und Joachim Hermisson kümmern sich seit fünf Jahren um sie. Hier berichten sie, worauf es in der Pflege ankommt.
www.spiegel.de www.spiegel.de

AI Summary:
"Living in Darkness: Caring for a Daughter with Severe ME/CFS"

A Life in Silence and Darkness​

Milena Hermisson, 22, has been severely ill with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) for over five years. Since 2022, she has been living in a dark room, wearing an eye mask and earplugs to shield her from light and sound, which her body cannot tolerate. She cannot speak, sit, read, or communicate normally. Her parents, Sabine and Joachim Hermisson, have been her sole caregivers, dedicating their lives to her care. Together with the Medical University of Vienna and the Austrian Society for ME/CFS, they have now published a detailed care guide for patients with severe forms of the illness.

What is ME/CFS?​

ME/CFS is a chronic illness marked by post-exertional malaise (PEM)—a worsening of symptoms after even minor physical or mental exertion. Other common symptoms include sleep disturbances, pain, cognitive impairments, circulatory issues, and extreme sensitivity to stimuli like light and sound. It often follows an infection such as the flu, mononucleosis, or COVID-19.

A Different Kind of Care​

Unlike standard medical care, which focuses on encouraging activity, ME/CFS care requires the opposite approach: minimizing exertion and stimulation. This principle is known as "Pacing". For severely ill patients like Milena, even the presence of another person in the room can be too much. The goal is to avoid worsening the condition.

The Hermissons describe how simple tasks—like hand washing or applying lotion—must be done gently and efficiently, sometimes in small steps. Fixed daily routines reduce stress and the need for communication, which can also be exhausting.

Communication Through Gestures​

Milena has not spoken in a long time. She communicates through hand signs, which are less draining than words. On good days, she signals when she can tolerate up to three spoken words. These brief moments are used to convey essential information or comfort. Despite the limitations, Milena and her parents maintain a deep emotional connection, often expressed through shared laughter.

The Importance of the Care Guide​

The care manual the Hermissons co-authored fills a critical gap in the healthcare system. When Milena first became bedridden, they found almost no professional guidance. The document offers practical, experience-based advice for families and caregivers, covering everything from hygiene and feeding to managing sensory input and emergencies.

It also addresses the psychological toll of the illness—on both patients and caregivers—and calls attention to the lack of medical understanding and infrastructure for ME/CFS in healthcare systems.

Daily Challenges and Long-Term Strain​

The Hermissons’ daily life revolves around Milena’s care. They have no backup plan for emergencies where both might fall ill. Their social life is limited, and they haven’t taken a vacation together in years. Even simple celebrations like Christmas are bittersweet, as Milena remains physically absent despite being emotionally present.

Despite the sacrifices, both parents say their life has meaning—but stress that it’s their daughter’s life that is truly unbearable, due to the illness and the systemic neglect she faces.

A Call for Awareness and Change​

The Hermissons hope their care guide reaches not only families but also medical professionals, many of whom still lack an understanding of ME/CFS. The most severely affected patients, like Milena, remain invisible—unable to visit clinics or hospitals.

They urge society to recognize ME/CFS as a real, debilitating disease, and to develop support structures, including home visits by trained professionals, and medical protocols that respect patients’ extreme sensitivities.

Quote from the Care Guide
“Severe ME/CFS is a psychological extreme state, intensified by neglect from the healthcare system. Despair, fear, and panic are common. Depression is rarer but can arise as a result of ongoing suffering.”

This story is a powerful reminder of the resilience of families, the failures of medical systems, and the urgent need to see and support the invisible lives behind closed, darkened doors.
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www.pnp.de

Immer mehr Menschen in Ostbayern leiden nach Covid-Infektion an ME/CFS

Sie gelten als „unsichtbare Kranke“, werden als psychisch angeschlagen oder mit Burnout diagnostiziert, doch ME/CFS ist eine Multisystemerkrankung mit schwerwiegenden Folgen, für die es bislang keine erfolgreichen Behandlungsoptionen gibt. Jetzt kämpfen Betroffene um eine spezialisierte Ambulanz...
www.pnp.de www.pnp.de

Rising ME/CFS Cases in Eastern Bavaria Following COVID-19: Patients Demand Specialized Care

A growing health crisis in Eastern Bavaria

In Eastern Bavaria, the number of people suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has increased significantly, particularly after COVID-19 infections. This complex, multisystem illness causes severe fatigue, pain, cognitive issues, sleep disturbances, and extreme sensitivity to stimuli. It affects women three times more often than men, especially between the ages of 30–39 and in adolescents aged 10–19.

Despite the seriousness of the disease, ME/CFS remains largely unrecognized by the healthcare system, and patients frequently face misdiagnoses or are labeled as having psychological issues.

Patients fighting for recognition and support

Patients like Anna Fuchshuber and Silke Droll describe a life dictated by their drastically reduced energy levels. Even minor activities can cause extreme relapses. Anna's mother, Kathrin Fuchshuber, has been advocating for ME/CFS recognition for years and founded the initiative “Leben zurück” to support others. She criticizes the lack of awareness and calls the current situation a catastrophe.

In Regensburg, patient groups are campaigning for the establishment of Bavaria’s first specialized ME/CFS outpatient clinic at the University Hospital Regensburg (UKR), as part of the initiative “ME/CFS-Versorgungskatastrophe in Ostbayern”.

Post-COVID link and medical challenges

Dr. Christoph Lassen from UKR emphasizes that COVID-19 has drastically increased ME/CFS cases. According to him, up to 80% of Post-COVID patients may develop ME/CFS. However, there are no standard treatments, and health insurance does not cover specialized care or therapies like blood filtration or supportive medications.

As a result, patients must often pay out of pocket for treatment. Even applying for disability benefits or care levels is a bureaucratic challenge.

Systemic gaps and long waiting times

ME/CFS patients in Bavaria currently lack medical support. The few specialists available have extremely long waiting lists — new appointments at the UKR are only possible from May 2026. Though Regensburg is equipped for rare disease diagnostics, ME/CFS is no longer considered rare due to the rising number of cases.

Efforts in children’s care are more advanced, such as the PAIS center at the Technical University of Munich (TUM). However, for adults, the system remains inadequate.

Political efforts and ministry statements

CSU State MP Stefan Meyer stresses the urgent need for local care facilities. In July 2025, the Bavarian State Health Council passed a resolution supporting interdisciplinary care structures for post-viral syndromes, including ME/CFS.

However, the Bavarian Health Ministry downplays expectations, stating no concrete plans exist for ME/CFS clinics in Regensburg, Passau, Neuburg, or Würzburg. Instead, it refers patients to general practitioners and environmental medicine clinics — a solution many consider insufficient.

What patients are demanding

  • Estimated 20,000 affected in Eastern Bavaria; no contact points since Post-COVID clinics were closed in December 2024
  • Lack of medical training for GPs leads to misdiagnosis and inadequate care
  • Call for action: On October 11, politicians, doctors, and patients will meet in Regensburg to discuss:
    • Establishing a ME/CFS clinic at UKR
    • Providing doctor training programs
    • Building a network of ME/CFS-focused GP practices
Conclusion

Patients and advocacy groups are pushing back against a system they feel has abandoned them. The increasing prevalence of ME/CFS following COVID-19, combined with poor healthcare structures and insufficient research funding, creates a critical need for specialized, accessible care in Eastern Bavaria and beyond.
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www.pnp.de

Die unsichtbare Krankheit: Was für die Betroffenen von ME/CFS vom Leben übrigbleibt

Von arbeitsunfähig bis hin zu komplett bettlägrig: Wer an ME/CFS erkrankt, der kann nicht mehr leben, sondern bekommt das Leben von der Multisystemerkrankung diktiert. Allein der Weg hin zu einer gesicherten Diagnose ist ein langer Kampf, wie drei betroffene Frauen aus Passau, Murnau und Erding...
www.pnp.de www.pnp.de

What a chilling quote from a neurologist:
"There are so many malingerers — you'll have to take your claims to the social court."
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The Invisible Illness: Life with ME/CFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe, complex multisystem disease that dramatically alters the lives of those affected. Patients often go through years of uncertainty, misdiagnoses, and lack of recognition—both medically and socially—before receiving a proper diagnosis, if at all. This article highlights the shared experiences of three women in Germany whose lives were profoundly changed by the illness.

A Long and Lonely Path to Diagnosis​

For many ME/CFS sufferers, the journey begins with unexplained symptoms like extreme fatigue, cognitive issues, and chronic pain. These symptoms often appear after infections such as COVID-19 or Lyme disease, but they don’t match typical diagnostic patterns. As a result, patients are frequently misdiagnosed or dismissed, shuffled between specialists who rule out everything from cancer to rheumatism—without identifying the real cause.

Life-Altering Consequences​

Once ME/CFS takes hold, it often leads to a complete loss of independence. Patients go from being fully engaged in work and family life to spending most of their time bedridden. Even small activities can trigger debilitating relapses due to post-exertional malaise (PEM), a hallmark symptom of the disease.

For example, one woman was nearly a year bedridden while caring for her newborn, and another found herself unable to leave her apartment for extended periods. A third, once a high-performing office manager, now struggles to manage even 30% of her previous workload.

Lack of Support and Recognition​

A common thread in all stories is the systemic failure of the healthcare and insurance systems to support ME/CFS patients. Essential services like household help or financial support are often denied unless a secondary, more "visible" diagnosis—such as cancer—is present. Therapies are typically not covered by insurance, leaving patients to pay hundreds of euros out-of-pocket for treatments that offer only slight improvements.

Patients also report a lack of informed specialists. Neurologists, in particular, are often ill-equipped to deal with the disease, and in some cases, outright dismissive. This lack of knowledge among medical professionals adds psychological strain to the already overwhelming physical burden.

Stigma and Misconceptions​

ME/CFS is still surrounded by harmful misconceptions, including the belief that it's a psychological or psychosomatic condition. Many patients have been told to simply exercise or "try harder," which often worsens their condition. Such attitudes contribute to stigma and make it harder for patients to advocate for themselves.

A Harsh Judgment​

One patient summed up the devastating reality of the disease with a powerful quote from a neurologist, illustrating the deep mistrust and ignorance ME/CFS patients often face:

“There are so many malingerers—you’ll have to go to social court to get anything approved.”
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This statement reflects the uphill battle ME/CFS patients endure—not only against their own bodies but also against a system that fails to see their suffering.

Conclusion

ME/CFS remains one of the most misunderstood and underdiagnosed conditions in Germany and around the world. While public awareness is slowly growing—partly due to overlaps with Long COVID—the path to recognition, proper care, and compassion is still long. What remains clear from the voices of those affected: they are not just fighting a disease, but a system that doesn’t yet know how to help them.
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www.zeit.de

Erkältung und Psyche: Fühlt sich an wie eine Depression, ist aber keine

Forschende entschlüsseln, was bei einer Erkältung mit der Psyche passiert. Woher das Leiden kommt und warum manche mehr jammern als andere.
www.zeit.de www.zeit.de

AI Summary: "Feels Like Depression, But It's Not: How Colds Affect the Mind"

When you're bedridden with a cold — congested, exhausted, and miserable — it's not just your body that suffers. Many people report feeling emotionally low, even depressed, during an infection. New research reveals that this emotional downturn isn't unusual — in fact, it's part of a well-documented biological response called "sickness behavior."

What Is "Sickness Behavior"?​

Scientists have observed that both humans and animals behave differently when fighting off infections. This includes symptoms like fatigue, loss of appetite, low mood, social withdrawal, and slower thinking — behaviors that resemble those seen in depression. Even animals like monkeys, fish, or birds show lethargy and isolation during illness.

This sickness behavior is driven largely by the immune system.

How the Immune System Impacts the Brain​

When the body detects a viral or bacterial infection, the immune system releases cytokines — chemical messengers that coordinate the immune response. These cytokines also send signals to the brain, either through pathways like the vagus nerve or by crossing the blood-brain barrier.

Psychoneuroimmunologist Julie Lasselin from Sweden’s Karolinska Institute explains: once the brain receives these signals, it shifts its priorities — reducing motivation, energy, and sociability, to conserve resources for healing. In other words: "All energy is directed toward recovery."

Is It a Cold or Depression?​

Despite the similarities, scientists emphasize that sickness behavior is not the same as clinical depression. The latter is longer-lasting, often has no direct biological benefit, and affects a person’s ability to solve problems. In contrast, the temporary symptoms during a cold or flu are adaptive — they help us rest, avoid social risks, and recover more effectively.

Interestingly, some research explores a possible overlap: people with depression often have higher levels of inflammatory cytokines, and treatments involving cytokines (like in cancer therapy) can trigger depressive symptoms. This hints at shared biological mechanisms in some cases.

The Social Side of Being Sick​

Sickness also alters how we perceive others. Infected people may become more suspicious or sensitive — interpreting strangers as threatening or misjudging others as ill. This hyperawareness serves a protective purpose: helping the sick avoid further infection or energy drain from social interaction.

Even healthy people unconsciously respond to signs of illness — studies show that just watching videos of sick individuals can trigger the observer’s immune system into action.

Why Some People Suffer More Than Others​

Not everyone experiences sickness the same way. Even with similar immune responses, people vary in how emotionally affected they feel during an infection. Factors like personality, current life stress, anxiety levels, and social isolation all play a role. Lonely or pessimistic individuals tend to suffer more during illness, and those who struggle to accept being unwell may feel worse.

Interestingly, the idea of "man flu" isn't supported by evidence — men and women both suffer, though they may express discomfort differently.

Conclusion: Embrace the Malaise​

Julie Lasselin encourages people to accept the discomfort of illness rather than resist it. Feeling awful is a sign that the immune system is working. The best response? Rest, conserve energy, and allow the body to heal.

So, the next time you're curled up under blankets, feeling down and defeated, take heart: this is your immune system doing its job.
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www.wir-sind-mueritzer.de

In Rostock wird intensiv zu Long- und Post-COVID geforscht » Wir sind Müritzer

Die Universitätsmedizin Rostock, die Rostocker NeuroProof Systems GmbH und das Fraunhofer-Institut für Zelltherapie und Immunologie (FhG-IZI) haben ein
www.wir-sind-mueritzer.de www.wir-sind-mueritzer.de

Collaborative Research in Rostock Aims to Uncover Biological Mechanisms of Long- and Post-COVID

In Rostock, a groundbreaking research initiative has been launched to better understand the biological underpinnings of Long- and Post-COVID syndromes. This collaborative project brings together the University Medical Center Rostock, the Rostock-based NeuroProof Systems GmbH, and the Fraunhofer Institute for Cell Therapy and Immunology (FhG-IZI). Funded by the German Federal Ministry of Health under the project name COVICare-M-V, the research aims to explore how antibodies in patients’ blood may influence nerve cell activity.

Investigating the Role of Antibodies in Long-COVID​

COVID-19 has left a significant number of patients struggling with long-term symptoms such as chronic fatigue, weakness, and reduced physical resilience. The diagnosis remains difficult due to a lack of objective biomarkers, often leaving patients without adequate recognition or targeted treatment.

A promising, though not fully understood, treatment involves extracorporeal blood purification—a method to remove excess antibodies from the bloodstream. Some patients have reported symptom relief following this procedure. However, it remains unclear which specific antibodies are involved and how they contribute to the disease process.

Research Goals and Methodology​

Prof. Dr. Steffen Mitzner, Head of Nephrology at the University Medical Center Rostock and site director at FhG-IZI, emphasized the importance of identifying biological evidence for observed patient outcomes. “We aim to determine whether the changes patients report after blood purification are also measurable at the cellular level,” he stated.

The project will focus on whether patient-derived antibodies affect the neuronal activity in cell cultures. This is where NeuroProof Systems GmbH plays a vital role. The company has significant expertise in neurophysiological measurements, particularly in analyzing the electrical activity of nerve cells to evaluate functional impacts.

Dr. Olaf Schröder, CEO of NeuroProof Systems GmbH, reported that early experiments already suggest certain antibodies may significantly suppress nerve cell activity. The goal now is to confirm and scientifically validate these findings.

A Unique Interdisciplinary Collaboration​

The strength of the project lies in the integration of clinical experience and neurobiological research. According to Prof. Dr. Emil Reisinger, project lead for COVICare-M-V, this combination is essential to advancing the understanding of Long-COVID. If it can be shown that blood samples post-purification have a reduced inhibitory effect on neurons, this would provide important evidence supporting the treatment's effectiveness.

Since 2020, the University Medical Center Rostock has run a dedicated Long-COVID outpatient clinic, treating patients with persistent symptoms from COVID-19, vaccine side effects (Post-VAC), and other viral infections. The clinic works through an interdisciplinary team including specialists in pulmonology, cardiology, general medicine, psychology, and physiotherapy.

This research initiative not only offers hope for better diagnosis and treatment options for Long-COVID patients but also strengthens Rostock’s position as a center for innovative, interdisciplinary medical research.
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www.berliner-zeitung.de

„Lebendig begraben“: Betroffene von Long Covid und Fatigue hängen Leichensäcke auf

Bis zu 140.000 Heranwachsende leiden unheilbar an ME/CFS. Eine Demo in Berlin erinnert an sie und fordert mehr Forschung. Die bewegende Geschichte zweier Kinder.
www.berliner-zeitung.de www.berliner-zeitung.de

AI summary:
"Buried Alive": Protest in Berlin Highlights Suffering of Long Covid and ME/CFS Patients

Silent Protest with Body Bags in Berlin

In a haunting protest on October 15, 2025, activists will hang 100 body bags outside Germany’s Federal Ministry of Research in Berlin. The bags represent the severely ill sufferers of Long Covid and ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), some of whom describe their condition as feeling “buried alive.” Organized under the hashtag #mein-kind-kann-nicht-mehr ("my child can’t go on anymore"), the demonstration aims to highlight the plight of up to 650,000 patients, including 140,000 children and adolescents, who are severely impacted and largely ignored by politics and public health policy.

No End in Sight for Thousands of Families

Despite the official end of the COVID-19 pandemic in April 2023, tens of thousands still suffer from debilitating post-viral conditions. ME/CFS leaves many bedridden, with no approved treatments and insufficient government support. Patients and families are calling for more research, clinical trials, and financial investment. Current funding—just €15 million per year—is far below what’s needed to move promising therapies into final clinical phases.

A Family’s Daily Struggle

Johanna Sasse, one of the protest organizers, shares her family’s heartbreaking story. After mild infections in late 2023, both her children (now 6 and 9 years old) developed severe ME/CFS symptoms: chronic pain, fatigue, cognitive decline, and light and sound sensitivity. The children can no longer attend school, and the family had to move closer to relatives for support. Despite visits to numerous doctors, a clear diagnosis only came after extensive testing at a Post-Covid clinic in Wesel.

No Real Treatment, No Future

Current treatment options are limited to off-label medications with temporary symptom relief. Promising new drug candidates exist, but government funding has not been secured to advance them. As a result, children like Sasse’s are left without hope for recovery or even basic education. Her son uses a classroom avatar, but even that proves too exhausting.

Despair and a Cry for Help

Beyond physical suffering, the psychological toll is immense. The "German Society for Humane Dying" reports an increase in requests for assisted suicide from ME/CFS patients—a deeply alarming trend.

A Political Call for Action

The protesters hope to confront Research Minister Dorothee Bär (CSU) and demand real engagement. So far, efforts to secure a meeting have been ignored. Still, around 20 members of parliament are expected to attend the demonstration. The organizers aim not only to raise awareness but also to push for immediate and meaningful political action.

"Staatsversagen" – A Failing State Response

The protest banners say it all: “1.5 million sufferers, €63 billion in economic damage, zero approved medications.”The word “Staatsversagen” (state failure) captures the growing frustration. Even former health minister Karl Lauterbach recently used the term in connection with ME/CFS.

As the 100 body bags line the street, they will serve as a powerful reminder—not only of those who are metaphorically "buried alive," but of those who truly lost the fight against an invisible illness.
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Yes, the difference with Germany and the UK is the innovation & protest and visibility vs rollover, collaboration and trying to keep patients passively patient.it does feel like being buried alive or as Jen brea said, going missing and no one looking. Since when do we shrug off young people unable to leave their houses and beds for decades. My carer just asked me if we had any issue with teenagers in my area. I replied I haven’t seen a teenager in 100 years.
 
www.n-tv.de

Covid-19-Schutzimpfung kaum noch gefragt - Arzt besorgt

Corona und die Risiken einer Covid-19-Erkrankung scheinen seit dem Abklingen der Pandemie vielen Menschen aus dem Bewusstsein gerückt zu sein. Die Impfzahlen sind rasant gesunken.
www.n-tv.de www.n-tv.de

Declining Demand for Covid-19 Vaccination in Thuringia Raises Concerns

The interest in Covid-19 vaccinations has significantly declined in Thuringia, Germany, with fewer than 32,000 people receiving a shot in the past year. This sharp decrease in vaccination numbers, compared to over 1.3 million in 2021 and 532,000 in 2022, has raised concerns among health professionals.

According to the Kassenärztliche Vereinigung, the vaccination rate for the 2023/24 season was only 7.4% on average in the state. In 2023, about 63,000 people were vaccinated, already a significant drop from pandemic peak levels.

Jena-based infectious disease specialist Mathias Pletz has called for new strategies to increase vaccination uptake. He suggests that health insurance providers should actively inform individuals about their personal risk of severe Covid-19 illness and long-term complications, particularly targeting high-risk groups such as the elderly, diabetics, and those with chronic lung conditions.

Pletz also emphasizes the importance of early education about vaccines in schools. He believes children should be taught about how vaccines work, how risks are assessed, and how vaccine approval processes function.

To address vaccination gaps, Pletz proposes involving hospitals more actively in vaccination efforts. Patients already admitted for other treatments could be vaccinated during their hospital stay, making the process more accessible.

With the end of summer, Covid-19 infections have begun to rise again in Thuringia. Since August, 61 people have been hospitalized due to the virus, mainly infants under one year old and adults over 70. Two deaths related to Covid-19 have also been reported.

The Covid-19 vaccine remains recommended for people over 60, especially those with pre-existing health conditions, nursing home residents, and healthcare workers. Pletz highlights that immunity from past infections does not last indefinitely. People should consider vaccination if their last Covid-19 infection occurred more than 12 months ago. The main goal of vaccination is to prevent severe illness and reduce the risk of long Covid.
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www.faz.net

Hoffnung für ME/CFS-Patienten: Ein Medikament, das manchen hilft

Mit Amifampridin wird Muskelschwäche behandelt. Aber es hilft auch manchen Menschen, die am Chronischen Fatigue-Syndrom leiden – und für die es noch keine zugelassene Therapie gibt. Welches Potential hat es und wo liegen die Grenzen?
www.faz.net www.faz.net

The big german newspaper Frankfurter Allgemeine Zeitung published an article about Amifampridine. We have discussed the case study by Böhmeke et al. here.

AI summary:
Amifampridine: Unexpected Relief for ME/CFS Patients

After a COVID-19 infection in 2022, IT specialist Tom Klose became so ill he was bedridden for over a year. No treatment helped—until early 2025, when ENT doctor Kai Störring prescribed him Amifampridine, a drug originally developed for a rare neuromuscular disease (LEMS). Within two weeks, Klose’s symptoms—including extreme fatigue and cognitive dysfunction—disappeared. He has since stopped the medication and remains well, planning to return to work in 2026.

Dr. Störring, himself affected by Long COVID, had tested various treatments on himself before turning to Amifampridine for patients. Klose’s recovery is one of several promising cases. Another doctor, cardiologist Thomas Böhmeke, also found relief from post-COVID fatigue through the drug and published a small case series showing similar benefits in others. Though based on limited data, these accounts have sparked interest among patients and physicians.

A pharmacy in Göttingen now produces Amifampridine capsules for off-label use, supplying hundreds of patients worldwide. About 70% reorder the medication—suggesting some benefit, though clear scientific proof is still lacking. Another popular off-label drug produced there is low-dose Naltrexone (LDN), also used by ME/CFS patients.

While not a cure, Amifampridine appears to help a significant number of patients reclaim parts of their lives. For Klose, it meant regaining mental clarity and independence after 18 months in bed. His story fuels calls for more structured testing of potential treatments for ME/CFS.
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www.merkur.de

Unbekanntes Krankheitsbild ME/CFS: Selbsthilfegruppe startet Fortbildungen für Ärzte

In Bayern bietet die Gruppe kostenlose Schulungen an, um Ärzte für die Herausforderungen der ME/CFS-Diagnose zu sensibilisieren.
www.merkur.de www.merkur.de

Support Group Launches Training for Doctors

In southern Germany, a patient-led initiative is tackling the critical lack of medical understanding surrounding ME/CFS. A support group from the Oberland region has independently organized free training sessions to educate doctors about the complexities of the illness. These sessions are aimed at improving diagnostic accuracy and treatment strategies, especially at the general practitioner level.

Self-Help Initiative Led by a Patient

Mandy Schuldt from Lenggries, who herself suffers from ME/CFS, founded the support group, which now includes over 40 members from across the Bad Tölz, Wolfratshausen, and surrounding areas. Frustrated by insufficient medical care and widespread ignorance among healthcare professionals, Schuldt and her group took matters into their own hands. They organized two accredited medical training sessions—with no institutional backing—targeted at physicians across Bavaria.

Training Details and Topics

The training sessions will be held online via Zoom:

  • December 5, 2025 (3:00 PM): Topics include the pathophysiology of Post-COVID, Post-Vaccine syndromes and ME/CFS, diagnostic criteria, biomarkers, comorbidities, pacing, and treatment approaches.
  • February 6, 2026 (3:00 PM): Focus on complex comorbidities such as MCAS, craniocervical instability (CCI), dysautonomia (e.g., POTS), and gastrointestinal motility disorders, along with practical diagnostic and therapeutic strategies.
Interested participants can register via email. Participation is free of charge.

Barriers in the Healthcare System

According to Schuldt, many patients face disbelief and stigma within the healthcare system. Their symptoms are often dismissed as psychosomatic, leading to misdiagnoses and obstructed access to disability benefits and care. One severe case involved parents of two sick teenagers being reported to child protective services by uninformed physicians—a situation resolved only with intervention from specialists at the Technical University of Munich.

Need for Cross-Disciplinary Expertise

Schuldt emphasizes that ME/CFS is a complex, multisystemic illness that requires cross-disciplinary medical knowledge. Diagnostic processes are time-intensive and often expensive, deterring many doctors from engaging with the condition in depth. The support group's goal is to lower these barriers by equipping physicians with practical knowledge and resources.

Official Recognition and Limited Response

Despite being organized by non-medical volunteers, the training has been officially recognized by the Bavarian Medical Association. Schuldt reports that the process of securing accreditation was challenging due to bureaucratic requirements. Informational materials were professionally printed and distributed to local clinics, and some doctors expressed appreciation. However, overall response has been limited so far.

Focus on General Practitioners

While the training is open to all specialties, Schuldt stresses that educating general practitioners is especially important. As the first point of contact, GPs play a crucial role in guiding patients toward appropriate specialist care, such as cardiology, neurology, or internal medicine. Better-informed GPs could significantly improve patient outcomes and access to care.
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