News from Germany

V.R.T. said:
I don't think ten years is a rational estimate in the event a drug is trialed now and found to work, which is what CS was referring to. And I think it could be significantly sooner if drug targets are found.

I certainly don't think we should get comfortable with the idea it will take ten years as many of us will not be here to benefit if it takes that long.
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I know my countries health agency tends to lag about 1 year behind the FDA in accepting new drugs. Which is a long time… I wonder if we might see lags like that and inequality of who gets to get treated.
 
AI Summary

“You Gradually Disappear from Life” – Living with ME/CFS​

Mirja Braun (36) from Eschweiler suffers from ME/CFS, a severe neuroimmunological disease that causes extreme exhaustion, pain, and cognitive issues, making everyday life nearly impossible. Even small activities like washing her hair or meeting friends leave her bedridden for days.

Her symptoms began in childhood, possibly triggered by the Epstein-Barr virus, and worsened significantly after shingles and multiple COVID-19 infections. Since 2018, she has been unable to work and now fluctuates between moderate and severe stages of the illness.

Mirja lives mostly in the dark, as light and noise cause pain. She describes life with ME/CFS as being cut off from the world, with friendships fading and daily communication limited. Despite the lack of a cure and widespread misunderstanding of the illness, she practices radical acceptance and finds strength in hope.

Support from her family, partner, and a GoFundMe campaign helps her cope, though she still faces financial strain, as health insurance covers little. Her greatest wish is that medical research will one day bring effective treatment. Until then, she tries to live each day consciously — even if it’s often “in the dark.”
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www.spektrum.de

Long Covid: Wie Bayern seine Kurbäder mit Long-Covid-Patienten therapiert

Dass die Kneipp-Therapie gegen Corona-Langzeitfolgen helfe, ließen bayerische Politiker schon früh verlauten.
www.spektrum.de www.spektrum.de

How Bavaria is treating its spa resorts with Long-Covid patients
- Bavaria’s government (LGL) funded two Kneipp-based hydrotherapy studies for Long-Covid with nearly €475,000.
- The clinic in Hopfen am See marketed hope-filled promises (“new zest for life”), later removed after criticism.
- Operators also run a bio-hotel and promote esoteric “Grander water” with unproven claims.
- LGL justifies funding by citing overlaps between Kneipp methods and national Post-Covid guidelines.
- Bavaria markets itself as “Rehabilitation and Spa Land No. 1,” with 53 recognized spa/healing resorts.
- Strong political ties: ex-Health Minister Klaus Holetschek (CSU) and others have long promoted Kneipp therapies.
- Local operators and Kneipp officials hold political roles, blending spa industry with policy influence.
- A second state-funded model project in Bad Aibling (up to €270,000) piloted combined in-clinic and digital Long-Covid therapy.
- Scientific evidence for Kneipp therapy exists only in limited areas (sleep, blood pressure, mild heart failure) — not Long-Covid.
- Patient advocacy groups criticize premature marketing and fear commercialization disguised as medical research.
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OrganicChilli said:
Unfortunately in Germany it's almost always mandatory to attend rehab centres in order to qualify for ill health retirement. It's funded by pension providers and health insurers. Absolutely insane system.
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That really sucks. I guess I’d prefer being forced to go to baths than GET/CBT but it’s still tone death to PEM. And for example impossible for me because I’m severe/bedridden.
 
www.openpetition.de

ME/CFS, Post Covid, Post Vac - 650.000 Erkrankte in D brauchen mind. 1 Milliarde Forschungsgelder!! - Online-Petition

Bis zu 650.000 Menschen in Deutschland leiden an ME/CFS, dazu kommen die Fälle mit Post Vac und Post Corona – viele schwerstkrank, ohne jede Therapie. Kinder und Jugendliche sind nicht beschulbar. Der jüngste Fall ist 4 Jahre alt. Die Krankheit gibt es seit 1969 !! und nicht 1 Medikament!! Ärzte...
www.openpetition.de www.openpetition.de

Petition: ME/CFS, Post-COVID, Post-Vaccine – 650,000 Patients in Germany Need Proper Research Funding

Summary:
In Germany, around 650,000 people suffer from ME/CFS, with more affected by Post-COVID and Post-Vaccine Syndromes. Many are severely ill, even children, and left without treatment, support, or hope. The disease is often misunderstood as psychological, despite clear medical evidence to the contrary.

Only €15 million has been allocated for research—far too little for a disease that causes over €60 billion in economic losses annually. Patients lie in dark rooms, isolated and in pain, while other sectors like gaming and space receive massive government funding.

There are just two specialist centers in the entire country. Proper diagnosis, treatment, and medical training are lacking. This situation is a public health crisis.

We demand at least €1 billion in funding to enable real research, clinical trials, and future treatments.

"This disease could affect anyone. Help us fight for hope, dignity, and proper care."
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Petition link: openpetition.de/!jsrbc
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Interview with Bettina Hohberger about the Recover (BC007 Study):
www.stern.de

Long-Covid-Medikament: "Mehr als die Hälfte spricht darauf an"

An der Universität Erlangen testen Ärzte erfolgreich ein Medikament gegen Fatigue bei Long Covid. Obwohl es für weitere Forschung an Geld fehlt, geben sie nicht auf.
www.stern.de www.stern.de

AI summary:
RECOVER Study: Hope for Long COVID Patients?
By Helmut Broeg | August 25, 2025 | University of Erlangen

Researchers at the University of Erlangen have completed the RECOVER study, testing a promising drug, BC007, for treating Long COVID fatigue. The study focused on patients suffering from severe fatigue and the presence of specific autoantibodies, believed to disrupt normal cellular processes.

Key Findings:​

  • More than half of the 30 patients experienced noticeable improvement after receiving BC007.
  • Some were even able to return to work.
  • The study used a cross-over design, where participants received both the drug and a placebo at different times.

Limitations:​

  • Not all patients responded to the treatment.
  • Some relapsed after initial improvement.
  • Researchers are now developing a biosignature to identify those most likely to benefit.

Scientific Insight:​

The drug targets autoantibodies that bind to cellular receptors and interfere with their normal function, potentially causing Long COVID symptoms.

Next Steps:​

  • A larger, targeted follow-up study is planned, but funding is lacking.
  • The company owning BC007 is currently insolvent, delaying further progress.
  • Researchers call for support from pharma or public funding.

Public & Political Support:​

  • The RECOVER study was federally funded, but there’s no current funding for follow-up trials.
  • The State of Bavaria and crowdfunding (raising €300,000) are helping fund a related study on ME/CFS.

Final Message:​

Despite setbacks, researchers remain committed.

“Giving up is not an option. There is hope – we just need the support to keep going.”
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taz.de

ME/CFS und Fußball: Wieder sichtbar sein

Mit der Pandemie ist die Zahl der an ME/CFS Erkrankten hochgeschnellt. Betroffene Fußballfans kämpfen mit „Empty Stands“ gegen das Vergessenwerden.
taz.de taz.de

ME/CFS and Football: Becoming Visible Again​

AI Summary

Since the COVID-19 pandemic, the number of people suffering from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has surged. Football fans with the illness, who can no longer attend matches, are raising awareness through the initiative Empty Stands.

Karl-Philipp Wulfert, a Union Berlin fan, hasn’t been able to attend matches since a severe ME/CFS crash two years ago left him mostly bedridden. The disease, which causes extreme exhaustion worsened by exertion, affects around 650,000 people in Germany—more than Type 1 diabetes and multiple sclerosis combined.

Similarly, Aiden Luca Maischein, a Hertha BSC supporter, also suffers from ME/CFS, though with milder symptoms. He still attends matches occasionally, but each one takes a physical toll.

Together with others, Wulfert co-founded Empty Stands, originally a support group that has grown into a campaign raising visibility and funds for ME/CFS research. The group runs a donation league, collaborates with clubs like Hannover 96 and VfL Osnabrück, and receives solidarity from fan scenes across Germany. Their message: “We are invisible because we cannot be there. But we must not be forgotten.”

For affected fans, Empty Stands offers a small but vital way to stay connected to football—a symbol of normalcy and social participation.
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Larger article in „Apotheken Umschau“, a free bi-weekly magazine that‘s available in apothecaries. According to Wikipedia it reaches around 15 million readers.

www.apotheken-umschau.de

„Muss doch endlich mal vorwärtsgehen“ – die lange Suche nach Medikamenten gegen ME/CFS

Hunderttausende Menschen mit ME/CFS in Deutschland sehnen sich nach Besserung. Wo bleiben die Medikamente? Eine Forscherin macht Hoffnung.
www.apotheken-umschau.de www.apotheken-umschau.de

AI Summary:
ME/CFS: "There Must Finally Be Progress" – The Long Search for Medications Against ME/CFS

Hundreds of thousands of people in Germany suffer from ME/CFS and long for effective treatment. So far, there are no approved therapies specifically for this disease. But researchers are increasingly optimistic.

Julian Nejkow has stopped counting how many substances he has tried in the past 11 years. “25? 30? Including supplements, probably around 100.” Like many others with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), each attempt represented a new glimmer of hope, but success was rare.

He fell ill after a severe Legionella infection in 2014, and since then, symptoms like exhaustion after minimal effort, dizziness, muscle pain, and cognitive issues have made life almost impossible.

Rising Awareness After COVID-19​

When Nejkow first heard of ME/CFS in 2016, there was no real treatment and hardly any expertise. Only after the COVID-19 pandemic did ME/CFS gain more public and scientific attention, as many Long COVID sufferers exhibited similar symptoms.

“We’ve never been closer to real breakthroughs. We now understand the disease mechanisms and already have approved drugs,”
says Carmen Scheibenbogen, immunologist at Charité Berlin.
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An Overlooked Disease with Devastating Impact​

Although ME/CFS was classified by the WHO in 1969, for decades it was under-researched. Treatments were mostly off-label and ineffective for most patients.

According to the German ME/CFS Society, it is one of the most disabling diseases, characterized by:

  • Severe fatigue after minimal exertion
  • Cognitive dysfunction (“brain fog”)
  • Sensory sensitivity
  • Muscle and nerve pain
  • A massive reduction in quality of life
The disease went largely unnoticed—until now. New estimates suggest that ME/CFS and Long COVID cost Germany over €63 billion annually. Yet, progress in developing treatments remains slow.

New Scientific Understanding: Autoantibodies and Nervous System Dysfunction​

Recent findings reveal that autoantibodies may play a key role, attacking stress receptors that regulate blood flow and nerve signals. This impairs oxygen supply to the mitochondria (the cells' energy centers), causing cellular energy deficits.

To spread this knowledge, the German ME/CFS Society published a medical guideline for practitioners on diagnostics and treatment strategies.

Drug Development: Repurposing Existing Medications​

Instead of developing entirely new drugs, researchers are exploring existing medications. Promising candidates include:

  • Vidofludimus
  • Low Dose Naltrexone (LDN)
  • Rapamycin
  • Vericiguat
  • Nattokinase
A once-promising experimental drug, BC007, failed in a major study but showed limited benefits in follow-ups.

In Norway, a drug targeting plasma cells (that produce autoantibodies) showed strong results, and new studies involving monoclonal antibodies used in cancer and autoimmune diseases are underway—though still lacking funding.

"Drug repurposing has huge potential,"
says Janina Werther, a representative of the German ME/CFS Society,
noting that using existing drugs reduces cost and time to market.
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The Greatest Barrier: Funding​

While research efforts in Germany and Austria have increased significantly—from 5 studies in 2019 to 42 in 2024—money remains the biggest hurdle.

“We need large-scale studies to get medications approved,”
says Scheibenbogen.
“That requires serious funding, which pharma companies are still hesitant to provide.”
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So far, only public funding can push these efforts forward.

A Call for Action – and a Glimmer of Hope​

Julian Nejkow has seen temporary improvement through antibody therapies, but his condition is too unstable for more treatment at the moment. He advocates for fellow patients, many of whom are in even worse conditions, living in darkness and isolation.

“We can’t leave these people behind,” he says. “Something must finally move forward.”
Right now, the only medication he has left is: hope.
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Funded projects

The two projects run from May 2025 to April 2026 and are funded with €25,000 each.

AI Summary

Dynamic Vessel Analysis (DVA) — Retinal Vascular Imaging

- Patients with ME/CFS and post-COVID syndrome frequently show signs of endothelial dysfunction and reduced blood flow in small vessels. The retina is a useful site to study this because it is part of the central nervous system and can be examined non-invasively.

- Dynamic Vessel Analysis (DVA) measures how retinal blood vessels respond to flickering light. The changes in vessel diameter provide information about vascular health and regulation.

- The project will develop a standardized analysis pipeline for DVA data. Instead of relying on a few single measurements, it will focus on the entire time course of the vascular response, which may capture more subtle abnormalities.

- Researchers will investigate whether DVA can differentiate between ME/CFS, post-COVID syndrome, and healthy individuals, which could help in identifying distinct disease patterns.

Neuroinflammatory Mechanisms in Post-Infectious ME/CFS

- Many patients with ME/CFS experience neurological symptoms such as brain fog, sensory hypersensitivity, and sleep disturbances. These suggest an involvement of the central nervous system, and recent evidence points to chronic neuroinflammation as a likely contributor.

- The project will use human stem cell–derived neurons, astrocytes, and microglia to create experimental models of brain tissue. These cells will be exposed to serum taken from patients with ME/CFS and from healthy controls.

- Researchers will measure several outcomes: whether neurons show signs of stress or damage, whether astrocytes change their activity in ways that disrupt brain balance, and whether microglia become activated in patterns linked to inflammation.

- This work may reveal direct immune-mediated effects on brain cells, providing a mechanistic explanation for neurological symptoms in ME/CFS.
 
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OrganicChilli said:
I thought we were fairly certain endothelial dysfunction and so called "neuroinflammation" aren't a thing in ME/CFS?
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At least it is unclear where any evidence is pointing.
The study on stem cell derived nervous system cells sounds like science fiction to me. I haveno idea what 'brain balance' might be. Maybe we should get Wyva to do a picture.
 
www.stuttgarter-nachrichten.de

Fellbacherin trotzt Krankheit: Ausgebremst durch Long Covid – „Mein Leben ist hart, aber ich habe keine Wahl“

Job, Kids, Sport: Nadine Dadour ist fit, bis sie am chronischen Erschöpfungssyndrom erkrankt. Die 47-Jährige wird aus dem Leben geworfen, aber sie hat einen Traum und braucht Spenden.
www.stuttgarter-nachrichten.de www.stuttgarter-nachrichten.de

AI Summary:
Nadine Dadour from Fellbach, once energetic and athletic, has been suffering from Long Covid and the severe form known as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) since October 2023. After a minor infection following two COVID illnesses, her life drastically changed. Today, she often can’t get out of bed – even showering or making the bed can leave her bedridden for a day. Despite the challenges, she doesn’t give up. She occasionally works from home and is developing the “Tannentraum”, a retreat in the Black Forest for people affected by ME/CFS. To realize this project, she is asking for donations. As there is currently no effective treatment or sufficient medical support, Nadine finds strength in small victories, her dog Mona, and the belief that things will one day improve.

Donation Link:
➡️ GoFundMe: Tannentraum unterstützen
➡️ Homepage: mein-tannentraum.de
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