News from Germany

There’s a long interview with a pwME on the website of german soccer team Hannover 96:
www.hannover96.de

"Du weißt nie, wie sehr dich die Anstrengung aus der Bahn werfen wird" - 96-Fan Meike über ihr Leben mit ME/CFS und warum ihr Platz leer bleiben muss

Schon als Kind war Meike (47) mit ihrem Vater bei Hannover 96 im Stadion, stand mehrere Jahre in N7 und ist dann schließlich auf einen Sitzplatz in den Oberrang der Nordkurve umgezogen. Bis vor vier Jahren bei ihr die Krankheit ME/CFS diagnostiziert wurde. In diesem Moment hat sich das...
www.hannover96.de

This has been made possible thanks to the efforts of the support group Empty Stands:

Empty Stands – Fans with ME/CFS, Long COVID & Post-Vac

emptystands.me emptystands.me

AI Summary of the interview:
Life with ME/CFS – Why Meike’s Seat Stays Empty

Meike, 47, was a passionate Hannover 96 fan, regularly attending home games and enjoying lively match days with friends. Her routine included breakfast in the market hall, emotional highs and lows in the stadium, and post-match evenings in the beer garden. But four years ago, everything changed when she became seriously ill with ME/CFS.

Since then, she hasn't been able to attend a single match. Noise, light, crowds, or even climbing stairs are now impossible for her. Her daily life is ruled by symptoms like dizziness, fatigue, sensory overload, and cognitive issues. Even brief activity can trigger Post-Exertional Malaise (PEM), a delayed and sometimes severe worsening of symptoms. Recovery is unpredictable and often takes days.

Meike explains how even a short conversation or picking up mail drains her energy. She compares it to waking up with just 30% battery, with every small task depleting her reserves. When the “battery” is empty, her body forces her to shut down — sometimes mid-sentence, sometimes mid-action.

She can no longer work and her family life is heavily impacted, especially for her 12-year-old son, who barely remembers her as healthy. Medical support is limited, and many treatments aren’t covered by insurance. Improvements are possible, but costly.

As part of the fan initiative Empty Stands, Meike wants to raise awareness for those too sick to speak for themselves. Her plea to society is simple but urgent: Learn about ME/CFS — and don’t forget those whose seats remain empty.
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Wo bleiben die Medikamente gegen Long Covid

Für Patienten mit Post Covid gibt es kaum Therapiemöglichkeiten. Experten forderten jetzt im Gesundheitsausschuss des Bundestags mehr Forschung u...
www.pharmazeutische-zeitung.de www.pharmazeutische-zeitung.de

AI Summary:
Where Are the Medications for Long Covid?

Ongoing Struggles for Long Covid and ME/CFS Patients

Patients suffering from Post Covid—often referred to as Long Covid—continue to face significant hurdles in obtaining appropriate diagnosis and treatment. The symptoms can persist for weeks or even months, ranging from fatigue, brain fog, and breathlessness to depression and anxiety. A particularly severe manifestation is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), which has been known even before the pandemic but remains poorly researched.

Diagnosis is complex, and even after recognition, patients often struggle to access effective therapies, especially those that are reimbursed by health insurance. ME/CFS patients are especially underserved, lacking both targeted treatments and adequate care infrastructure.

Limited Therapeutic Progress

In 2023, the German Federal Institute for Drugs and Medical Devices (BfArM) released a "Therapy Compass" listing in-label treatment recommendations for some Long Covid symptoms, such as depression and pain, but not for ME/CFS. Additionally, work began on a list of off-label medications eligible for reimbursement. As of May 2025, five drugs were recommended:

  • Agomelatine for fatigue and post-viral ME/CFS
  • Ivabradine for POTS (Postural Orthostatic Tachycardia Syndrome)
  • Low-dose Naltrexone for fatigue
  • Vortioxetine for cognitive impairments
  • Metformin for early prevention in high-risk patients
Although finalization of the list is said to be near, neither BfArM nor the Joint Federal Committee (G-BA) has provided a clear timeline. The standard approval process involves multiple consultation rounds and legal reviews, making timing unpredictable.

Expert Calls for Urgent Action

On October 15, a hearing in the Bundestag's Health Committee highlighted the dire situation. Experts like Sebastian Musch from the German ME/CFS Society criticized the lack of awareness, training, and treatment infrastructure, pointing to a systemic neglect of post-viral conditions. Many patients face rejected benefit claims, leading to financial hardship.

Simon Schöning from Long Covid Deutschland estimated that around 1.5 million people in Germany are affected. He called for specialized centers, structured care pathways, and increased research funding.

Dr. Bettina Hohberger emphasized the need for diagnostic biomarkers to replace the current lengthy exclusion process. Prof. Dr. Carmen Scheibenbogen stressed that ME/CFS is a serious chronic illness not treatable through psychotherapy, and that no causal medications exist yet.

Political Support and New Initiatives

Hessen’s Health Minister Diana Stolz urged society not to stigmatize patients and to expand research and support efforts. She pointed to regional initiatives like the Post-Covid Coordination Center in Gießen and the AmRe-LoCO project in the Lahn-Dill district.

The German Ministry of Health has also launched a funding initiative focused on the long-term effects of Covid-19. Meanwhile, the G-BA has introduced a new guideline aiming to improve care for people with Long Covid and ME/CFS.

Despite political attention and some structural steps, the road to effective treatment remains long.
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www.spiegel.de

(S+) Depressive Symptome: Geringverdiener leiden stärker unter Krisenfolgen

Die Unterschiede bei der psychischen Gesundheit werden immer größer: Eine neue Studie zeigt, dass Geringverdiener fast doppelt so häufig von depressiven Symptomen betroffen sind wie noch vor fünf Jahren.
www.spiegel.de www.spiegel.de

Data was collected via random phone calls. I wonder how many undiagnosed pwME slipped into this analysis.

AI Summary:
Growing Mental Health Inequality in Germany

Depression on the Rise, Especially Among the Poor
A new long-term study from the Robert Koch Institute (RKI) reveals a sharp increase in depressive symptoms among low- and middle-income groups in Germany since 2019. In 2024, these groups reported nearly twice as many depressive symptoms compared to five years earlier. The data, published in Deutsches Ärzteblatt International, come from the ongoing GEDA health survey.

Pandemic and Economic Crises Deepen Mental Health Divide
While the early phase of the COVID-19 pandemic in 2020 had a limited effect, mental health significantly declined from 2022 onward. Key drivers included the war in Ukraine, inflation, energy price shocks, and economic uncertainty. These factors disproportionately affected those with lower incomes, with nearly one-third showing signs of depression by 2024. High-income earners were also affected, but at a much lower rate (around 10%).

Inequality Goes Beyond Finances
Experts like Verina Wild from the University of Augsburg stress that mental health is shaped by structural factors, not just personal lifestyle. Poorer individuals have fewer options to improve their environment, such as moving to better housing or accessing green spaces.

Lack of Treatment Resources
Despite growing awareness, mental health services remain limited. Ines Keita from the German Depression Aid Foundation warns of long wait times, especially for children and adolescents. While better public understanding of depression is welcome, expanded treatment capacity is urgently needed. The RKI plans to improve monitoring by including all diagnostic criteria in future reports.

Study Methodology
The study is based on data from the GEDA (Gesundheit in Deutschland aktuell) health survey, collected between 2019 and 2024. Randomly selected individuals were interviewed by phone about their mental well-being, focusing on two core symptoms of depression: low mood and loss of interest or joy. The data were analyzed by researchers from the RKI and Charité Berlin.
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Edit: found the study and created a thread here.
 
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Unterstützung für Ärzte bei der Versorgung von ME/CFS und Long Covid

www.kvhh.net www.kvhh.net

It might be worth a try to bring this online training course to your doctor‘s attention: www.mecfs.de/onlinefortbildung/

Support for Physicians in the Care of ME/CFS and Long COVID
The COVID pandemic has led to a significant increase in patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). To support physicians in diagnosis and treatment, the following resources have been developed.

Clinical Practice Guide
The German Society for ME/CFS, in collaboration with the Charité Fatigue Center, has developed a clinical practice guide for ME/CFS and Long COVID. It includes essential information about the condition, practical guidance for procedures and questions in everyday practice, as well as evidence-based information on treatment. Additionally, two short overviews on diagnostics and therapy are available for download to ensure quick access to key information. The professional resources are accessible exclusively to medical professionals via a DocCheck login.

Online resource: https://praxisleitfaden.mecfs.de/mecfs

Online Training Course
In November 2025, the Charité Fatigue Center, supported by the German Society for ME/CFS, will offer a two-part online training course for medical professionals: “ME/CFS in Practice and Research”, under the scientific direction of Prof. Dr. Carmen Scheibenbogen (Charité Berlin). The course is accredited by the Hamburg Medical Association with four continuing education points per module. Participation is free of charge, and each module can be attended independently.

  • Module 1: “Recognizing and Treating ME/CFS in General Practice”, November 5, 2025 (6:00 – 8:00 PM)
  • Module 2: “ME/CFS and Post-Viral Illnesses: In-Depth Knowledge on Pathophysiology, Treatment Developments and Recommendations”, November 19, 2025 (6:00 – 8:00 PM)
Further information and registration: www.mecfs.de/onlinefortbildung/
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A certified Lightning Process coach competes in the current season of the music show „The Voice of Germany“.

AI Summary:
From Hospital Bed to “The Voice of Germany”
How Gwendolin Reinecke Fought Chronic Illness to Pursue Her Dreams

Gwendolin Reinecke, a 31-year-old from Dresden, is one of the contestants on the current season of The Voice of Germany. But her appearance on the popular talent show is more than just a musical opportunity—it’s the result of a long and painful journey through illness and self-discovery.

A Hidden Struggle Behind Smiling Photos​

Despite smiling in photos, Reinecke was battling a debilitating fatigue that left her barely able to make breakfast. It began in 2015 after an undiagnosed case of mononucleosis, leading to chronic exhaustion. The condition, eventually diagnosed as chronic fatigue syndrome (ME/CFS), forced her to quit her teaching studies in Bavaria and return to live with her parents in Dresden.

For over five years, she struggled with extreme exhaustion that felt like a mix of being constantly jetlagged, sick, and mentally foggy. The illness isolated her and pushed her into deep self-reflection. In 2019, after a breakup, she shaved her head and cleared out her wardrobe—symbols of a life she no longer identified with.

A New Chapter with Music​

Six years later, Gwendolin has a new image and a new sense of purpose. Riding her red moped to a concert venue in Dresden, she now wears a sporty jacket and a confident smile. Her passion for music, which began at age 13, has taken center stage again.

She applied to The Voice of Germany and was selected from thousands of applicants as one of only about 100 contestants. Though the outcome of her audition is still under wraps, her appearance on the show will be broadcast next Thursday.

Her selection triggered a wave of emotions—and a physical setback. But this time, she refused to let her body stop her. “I’ve come too far,” she said.

ME/CFS: A Growing Concern​

Reinecke’s story also highlights a growing health issue. ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has gained more attention during and after the COVID-19 pandemic due to its similarities with Long COVID. Estimates suggest that between 250,000 and 650,000 people in Germany may be affected, but reliable treatments remain elusive.

Reinecke tried numerous therapies—from alternative medicine to dietary supplements—with little success. A controversial program called the “Lightning Process,” developed by a British psychologist, marked a turning point. It aims to “reprogram” the brain in three days using positive thinking. While she doesn’t credit it with a miracle cure, it gave her the mindset to slowly rebuild her life—one step at a time. Eventually, she even became a certified coach for the program but later criticized it for putting too much pressure on patients.

New Goals: Coaching, Music, Acting​

After living on social support (Bürgergeld) for a decade, Reinecke is determined to move forward. She now wants to combine what helped her recover with her personal experience to support others suffering from ME/CFS.

Her vision includes coaching, making music, and acting. She’s already landed small acting roles and is currently auditioning for a film project. Looking back, she believes her illness gave her the courage she never had before.

“In the past, I thought I wasn’t good enough and would rather stay in the background,” she said. “Now I ask myself: what’s the worst that could happen?”
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Utsikt said:
That statement is seriously misleading. Parker was an osteopath and NLP coach at the time, and claimed he could talk to ghosts. He got his psychology degree in 2019.
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He handed in his PhD thesis in Health Psychology in 2019.
I couldn’t find any information about his BA and MA degrees.

Interesting info that didn’t make it into the AI summary: she got her diagnosis from the Charité in Berlin.
 
Chandelier said:
He handed in his PhD thesis in Health Psychology in 2019.
I couldn’t find any information about his BA and MA degrees.

Interesting info that didn’t make it into the AI summary: she got her diagnosis from the Charité in Berlin.
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I had forgotten that we went after pw drug addictions with his rebranded LP. So his PhD isn’t even relevant for ME/CFS.
 
www.wochenblatt-reporter.de

ME/CFS, Post Vac, Post Covid, Hilfe: Das stille Leiden - kannst du uns sehen?

Anlässlich des Tages der nicht sichtbaren Beeinträchtigungen am 20. Oktober macht die Initiative Liegenddemo Speyer auf das stille Sterben vieler Menschen mit ME/CFS, Post Vac Syndrom und Long COVID aufmerksam.
www.wochenblatt-reporter.de www.wochenblatt-reporter.de

In eigener Sache
Die Liegenddemo Speyer sucht dringend nach Unterstützern. Viele Betroffene haben leider nicht die Kraft, um für ihre Sache zu demonstrieren und einzustehen.
Wir brauchen daher dringend eure Hilfe! Gerne auf allen Kanälen (Instagram: liegenddemo.speyer) oder per Email (liegenddemo.speyer@gmx.de) bei uns melden.
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AI summary:
The Silent Suffering – Can You See Us?
October 17, 2025
Raising Awareness for the Invisible Illnesses

On the occasion of the "Day of Invisible Disabilities" on October 20, the initiative Liegenddemo Speyer is drawing attention to the silent suffering and dying of people affected by ME/CFS, Post-Vac Syndrome, and Long COVID.

The group has joined a nationwide open call for help, launched by numerous self-help organizations, urging both politics and society to take immediate and decisive action.

The Quiet Death

"People in Germany are dying – not only from their illnesses, but also due to ignorance, outdated medical guidelines, and a lack of healthcare support," states the appeal, which has already been signed by over 20 self-help groups from across the country.

Liegenddemo Speyer fully supports these demands and emphasizes:
"It is a quiet, silent death – happening behind closed doors. Every day, patients are losing their lives without the public even noticing."

What We Demand

On this day dedicated to invisible disabilities, the initiative reminds everyone that these illnesses could affect any one of us – and that looking away is no longer an option.

Together with other groups, the initiative is calling for:

  • The establishment of nationwide specialized centers for Post-Vac, ME/CFS, and Long COVID
  • Mandatory training for doctors and medical assessors
  • Guaranteed basic financial support for all affected individuals
  • Access to medication and medical aids as a human right
  • Public documentation of deaths to make the silent suffering visible
"The dignity of every human being is inviolable" – this fundamental right must also apply to those who are currently living and dying without adequate help.

Liegenddemo Speyer is calling on politicians, the media, and society as a whole to stand in solidarity, listen to the voices of those affected, and finally take concrete action.
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www.volksfreund.de

Long-Covid-Forschung: Corona: Darum sollte man eine Infektion immer noch nicht unterschätzen

Warum bekommen einige Menschen auch heute noch nach einer Corona-Infektion Long Covid und andere nicht? Und was hat Stress damit zu tun? Das wollen Forscher in Luxemburg herausfinden.
www.volksfreund.de www.volksfreund.de

I found this to be quiet a confusing read.

We already have one thread about a paper by professor Schulz and his PhD student Buntic.

AI Summary:
Five Years After the Pandemic: Why COVID-19 Should Still Be Taken Seriously

Research in Luxembourg

Psychologists André Schulz and Nina Buntic at the University of Luxembourg are leading a large study on Long COVID and chronic exhaustion. Many participants in their study continue to suffer from symptoms such as fatigue, shortness of breath, loss of taste or smell, and cognitive issues long after their infection.

At least ten percent of those who recover from COVID-19 go on to develop long-term health effects. Although other infections, such as influenza, can cause similar issues, the coronavirus has become the most common trigger for new ME/CFS cases.

A significant number of study participants are unable to work and are on long-term sick leave or early retirement. The majority are middle-aged women. Many experience abnormal blood pressure and heart rate, which manifests as dizziness or heart palpitations. The study aims to identify differences between healthy individuals, Long COVID patients, and ME/CFS sufferers, in order to understand the root causes.

The Role of Stress

The researchers are particularly interested in the role of stress. Schulz believes that the symptoms arise from faulty communication between the brain and body, which depends on the autonomic nervous system, stress hormones, and the immune system. A person's ability to perceive and interpret bodily signals may also influence the severity of symptoms.

People with heightened body awareness may be better at managing changes and regulating stress responses. In contrast, ME/CFS patients often show heightened sensitivity to stimuli and reduced cortisol levels, which contribute to exhaustion and make it harder to cope with stress.

Buntic argues that both physical and mental stress can worsen ME/CFS. However, avoiding stress entirely is not a cure. ME/CFS is a complex condition with no known therapy or chance of spontaneous recovery. Still, researchers are beginning to better understand the biological processes involved.

Prevention and Recovery

To reduce the risk of Long COVID, Schulz advises allowing the body enough time to recover during and after a COVID-19 infection. People under high stress—professionally or privately—often return to normal activities too soon. His recommendation is simple: plenty of sleep and minimal stress.

Anyone who feels they are not recovering well after an infection should take extra time to rest, even if it requires extended sick leave. However, Schulz emphasizes that no one is to blame for developing ME/CFS, even if they followed all the right steps. Still, proper rest gives the body the best chance of full recovery.

Because of the ongoing risk of long-term complications, it remains important to test for COVID-19 when symptoms such as hoarseness, cough, fever, fatigue, or shortness of breath appear. This allows people to take appropriate measures to protect their health and reduce further risks.
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www.welt.de

Long Covid bei Kindern: „Jede neue Corona-Erkrankung birgt das Risiko, vermehrt Long Covid zu entwickeln“ - WELT

Die Zahl der Corona-Fälle steigt deutlich an. Das Risiko für Long Covid hängt auch mit der Häufigkeit der Erkrankungen zusammen. Auch Kinder sind gefährdet. Ein Experte erklärt, worauf Eltern achten sollten – und warum es womöglich neue Impfstoffe braucht.
www.welt.de www.welt.de

Interview with Prof. Dr. med. Bernhard Schieffer about the Zhang et al. study:
Reinfection with SARS-CoV-2 in the Omicron Era is Associated with Increased Risk of Post-Acute Sequelae of SARS-CoV-2 Infection: A RECOVER-EHR Cohort Study [s4me thread]
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AI Summary:
Increased Risk of Long Covid with Reinfection
Bernhard Schieffer, head of the Post-Covid Clinic at the University Hospital of Marburg, emphasizes that Covid-19 remains a risk factor for developing Long Covid—even in children. While children generally experience milder initial infections, each reinfection raises the likelihood of long-term complications. This aligns with clinical experiences in both adults and children, he says.

Comparability of US and German Data
Schieffer notes that the recent US-based study, despite not directly comparing populations from the US and Germany, is relevant for Germany due to similar child populations and vaccination strategies. The large dataset provides clarity and is valuable for shaping future treatment and vaccination approaches.

Vaccination: Balancing Risks and Benefits
The cardiologist acknowledges the rare possibility of developing covid-like symptoms after vaccination (known as "Post-Vac Syndrome"), but argues that this is no reason to generally reject immunization. Vulnerable groups, including certain children, should still be vaccinated. The decision on which vaccine type—mRNA, vector-based, or inactivated—suits children best is crucial and remains an area needing further research.

Study Highlights Importance of Prevention and Data Use
Despite the relatively low statistical risk of children developing Long Covid after reinfection (less than 0.2%), the significance of the large-scale study should not be underestimated. It underscores the importance of preventative strategies and the role of digital health records in facilitating international research.

Protective Measures Beyond Vaccination
Schieffer stresses that protection isn’t limited to vaccination. Ensuring children have outdoor activity and exposure to environmental antigens, as well as improving air filtration and mask use in classrooms, are also effective preventive strategies—especially during known infection waves. He cites the reduction in RSV-related hospitalizations due to vaccination as a parallel example of the benefits of immunization.

School Closures Viewed Critically in Retrospect
Reflecting on school closures during the pandemic, Schieffer believes they were ultimately detrimental. The lack of in-person interaction significantly impacted youth development. Today, he says, with the knowledge and data we now have, a more targeted approach—prioritizing vaccination for vulnerable groups—would likely be favored over broad closures or mass vaccinations of children.

Open Questions and Future Preparedness
Schieffer raises critical questions: What have we learned from the pandemic? Should all age groups be treated equally in vaccination policies? Should future lockdowns prioritize social and developmental needs of youth? These considerations are vital for shaping responses to future pandemics.

Current Situation in the Long Covid Clinic
The clinic mainly treats adults but also handles severe pediatric cases, particularly among 12–16-year-olds. Although there is currently no cure, Schieffer and his team aim to alleviate symptoms in collaboration with pediatric specialists. He emphasizes the need for a broader clinical network across Germany, as current infrastructure cannot handle the rising number of Long Covid patients.

Fading Attention and Long-Term Outlook
Schieffer warns that, as public and political attention shifts, Long Covid patients risk being forgotten. With expected healthcare budget cuts, chronically ill individuals—especially those with underdiagnosed conditions like Long Covid or Post-Vac Syndrome—will face even greater challenges. He draws a parallel to the HIV crisis in the 1980s, reminding us that it took years to develop effective treatments and that the world still loses hundreds of thousands to HIV annually.

Conclusion
According to Schieffer, Long Covid is here to stay, and society must adapt. An estimated two million people in Germany, including many young individuals, are affected and unable to work—posing a challenge for both public health and the labor market. Avoiding infection remains key.
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Chandelier said:
www.volksfreund.de

Long-Covid-Forschung: Corona: Darum sollte man eine Infektion immer noch nicht unterschätzen

Warum bekommen einige Menschen auch heute noch nach einer Corona-Infektion Long Covid und andere nicht? Und was hat Stress damit zu tun? Das wollen Forscher in Luxemburg herausfinden.
www.volksfreund.de www.volksfreund.de

I found this to be quiet a confusing read.

We already have one thread about a paper by professor Schulz and his PhD student Buntic.

AI Summary:
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Of course psychologists look for a psychological explanation of Long Covid, so they settle on stress. At least their prescription is rest not the usual exercise.
 
biermann-medizin.de

Schlaf als Schlüssel zum Verständnis von ME/CFS - Biermann Medizin

Forschende aus Mannheim untersuchen, wie schlafbezogene Biomarker neue Einblicke in ME/CFS liefern könnten.
biermann-medizin.de biermann-medizin.de

Good to see that they plan to include severe cases, too.

AI Summary:
Researchers in Mannheim are studying how sleep-related biomarkers could shed light on the development of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The goal of the “Sleep-Neuro-Path” project is to improve understanding of the biological mechanisms and causes of the disease to pave the way for personalized therapies. Following the COVID-19 pandemic, the number of ME/CFS cases has risen significantly within the post-COVID spectrum, while effective treatment options remain limited.
Funded with around 1.6 million euros by the Federal Ministry for Research, Technology and Space (BMFTR), the project is coordinated by the Central Institute of Mental Health in Mannheim. Partner institutions include the Fraunhofer Institute for Digital Media Technology (IDMT) in Oldenburg, the University Medical Center Schleswig-Holstein in Kiel, and the pediatric department of Marien Hospital Wesel. The researchers analyze EEG data collected during sleep to detect potential dysfunctions in neural networks and uncover disease-related processes.
According to project coordinator Dr. Claudia Schilling, the team examines how sleep characteristics correlate with imaging results, biochemical analyses, and genetic risk profiles. The study also uses 7-Tesla magnetic resonance spectroscopy to investigate brain metabolism. This combination aims to identify individual-level predictors for ME/CFS and enable future personalized treatments.
A key focus of the project is the study of severely affected adolescents, carried out in cooperation with Marien Hospital Wesel. The Fraunhofer IDMT provides a mobile multi-channel EEG system for home use, allowing brain activity to be measured in a familiar, less stressful environment. Electrodes are applied to the face like adhesive patches to minimize discomfort. The University Medical Center Schleswig-Holstein contributes expertise in analyzing sleep-related and blood-based biomarkers.
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www1.wdr.de

NRW-Landtag zeigt Kunst von Menschen mit ME/CFS

Eine Ausstellung im nordrhein-westfälischen Landtag gibt ab kommender Woche einen Einblick in den Alltag von Menschen, die mit dem chronischen Krankheitsbild ME/CFS leben.
www1.wdr.de www1.wdr.de

North Rhine-Westphalia State Parliament Showcases Art by People with ME/CFS
Published: October 22, 2025, 2:55 PM

An exhibition at the North Rhine-Westphalia state parliament will, starting next week, offer insights into the everyday lives of people living with the chronic illness ME/CFS.

According to State Parliament President André Kuper (CDU), the exhibition in Düsseldorf aims to make visible what often remains hidden: the suffering, strength, and dignity of people living with a severe chronic condition.

It is estimated that around 650,000 people in Germany are affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The number of cases has significantly increased due to Long COVID, according to reports. Symptoms include extreme exhaustion, concentration difficulties, pain, and circulatory problems.
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3 MECFS projects are nominated for the German Engagement Award 2025, more votes needed​

https://www.reddit.com/r/cfs/?f=flair_name:"Activism"

Hello dear fellow sufferers,

three german public ME/CFS initiatives/projects have been nominated for the German Engagement Award2025 (Deutscher Engagement Preis 2025, https://www.deutscher-engagementpreis.de). At the moment, they are ranked 6th, 7th, and 10th out of 400 nominated initiatives — so things are looking quite good! But we need more votes...

Voting is open until October 26th. You only need a german mobile phone number, nothing else — so there’s no data protection risk. The first-place winner initative receives €10,000, but more importantly, it brings much-needed attention to our illness, which is so important.

With this link, you’ll go directly to the three projects. Each phone number has three votes — which fits perfectly.

http://preis25.mecfs-jetzt.de

Please let your friends and acquaintances know and encourage them to vote for these projects — all of these projects truly deserve it.

PS: Sorry, but only german mobile phone numbers can participate
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Chandelier said:

Unterstützung für Ärzte bei der Versorgung von ME/CFS und Long Covid

www.kvhh.net www.kvhh.net

It might be worth a try to bring this online training course to your doctor‘s attention: www.mecfs.de/onlinefortbildung/
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I was wondering what you folks think of this. It strikes me as the most comprehensive thing on ME/CFS I've seen to date ... and it's all in one place!
I'm thinking of sending it to folk I know who are health professionals of various kinds. In your opinion, does this reflect well what we know about ME/CFS so far and will it stand up to scrutinity? I don't want to make a fool of myself!
 
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www.berliner-zeitung.de

Long-Covid-Forschung gekürzt: Merz predigt Arbeit – und drängt Kranke ins Bürgergeld

Die Bundesregierung kürzt die Forschungsgelder für Long Covid drastisch. Das ist nicht nur unsozial, sondern auch ökonomisch verantwortungslos. Ein Kommentar.
www.berliner-zeitung.de www.berliner-zeitung.de

AI Summary:
The German government is drastically cutting funds for Long Covid research, showing once again how little it has learned from the pandemic. This is especially bitter because a government that promotes work and productivity is withdrawing money from an area where people are permanently forced out of employment due to illness.

The author describes his girlfriend, who has suffered from Long Covid and ME/CFS for two years. Once active and employed, she now struggles with even small tasks. Her situation reflects how many affected people are left without support by politics.

While Health Minister Nina Warken (CDU) had promised action, the budget tells a different story. Research and care funds are being reduced from around 150 million euros to just 16 million — a cut of nearly 90 percent. This happens despite studies estimating annual economic losses of over 63 billion euros, with total costs since the pandemic exceeding 250 billion euros. Around 871,000 people in Germany have Long Covid, and about 650,000 suffer from ME/CFS. Many can no longer work, rely on welfare, or even need care. Economists warn that failing to fund research will ultimately cost more, as it prevents recovery and worsens the labor shortage.

Beyond statistics, the author highlights the personal suffering of patients who lose jobs, relationships, and financial security. Yet Chancellor Friedrich Merz (CDU) continues to call for more work and stricter welfare controls. Many patients, no longer eligible for sick pay, are pushed into the welfare system — not out of unwillingness, but inability to work. The bureaucratic process of applying for benefits is already difficult for healthy people and even more so for the chronically ill.

At the same time, the government invests 500 billion euros in infrastructure — roads, bridges, power grids — while neglecting the health of hundreds of thousands of workers. The author calls this a contradiction: a government that complains about “lazy Germans” but cuts research that could help people return to work. Long Covid is not a marginal issue but one of the greatest health, social, and economic challenges of our time.

The author concludes that his girlfriend wants to work and contribute but receives only ignorance from a government that funds concrete instead of healing. He argues that it is the government, not the sick, that has lost its sense of responsibility and willingness to perform.
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