News from Germany

Der Spiegel has an interview with Professor Bingel about Placebos

AI Summary:

  • Placebo effects are physiologically measurable and involve neurobiological mechanisms, such as the release of endogenous opioids (endorphins), particularly in pain processing. These effects can modulate peripheral nociceptive signaling.
  • Nocebo effects may be equally or even more powerful than placebo effects, especially in pain contexts. Negative expectations can effectively cancel out the pharmacological effect of potent drugs, such as opioids.
  • Open-label placebos (where patients are aware they are receiving a placebo) can still produce therapeutic effects, likely due to conditioning and interpretation of symptom fluctuation.
  • Systemic physiological changes have been observed, including shifts in inflammatory markers, and measurable effects on the cardiovascular, gastrointestinal, and immune systems.
  • "Placebo by proxy" occurs when a caregiver’s positive expectations influence the health outcomes of dependents (e.g., animals or children), relevant in veterinary medicine and pediatrics.
  • Clinical communication functions as a modulator of treatment outcome: framing and verbal interaction can significantly alter therapeutic efficacy or side effect profiles.
  • Nocebo effects are ethically challenging to study, as inducing negative expectations deliberately in patients conflicts with research ethics, limiting empirical data.
  • COVID-19 vaccine studies show that up to 75% of systemic side effects (e.g., headache, fatigue) were due to nocebo responses, highlighting the large-scale relevance of expectation effects.
  • Curricular integration is needed: Placebo and nocebo mechanisms should be part of medical training, with a focus on developing communication skills to harness positive effects and mitigate harm.

Her she refers to her study from 2011. I created a thread for it here.
In a study using the potent, short-acting opioid Remifentanil, Bingel's team investigated how expectations affect pain perception. All participants received the same dose of the drug, but were divided into three groups with different expectation settings: one was unaware treatment had begun (neutral), one was told they were receiving a powerful analgesic (positive), and one was falsely informed the medication was being stopped (negative).

The results were striking: Positive expectation nearly doubled pain relief, while negative expectation almost completely neutralized the drug’s effect — despite identical pharmacological dosing. This demonstrates that negative expectations and emotions can entirely undermine even highly effective treatments. These findings are not limited to experimental opioids but extend to everyday situations, like taking over-the-counter painkillers such as ibuprofen.

The interview ends on a note about mass-hysteria:

AI Summary:
Nocebo effects can spread epidemically when people are confronted with vague or invisible threats, such as fears of electromagnetic radiation from phones or Wi-Fi. Even in the absence of a physical cause, the symptoms experienced by affected individuals are real and distressing. Bingel is particularly interested in the mechanisms that allow negative expectations and fears to spread so rapidly in society. She believes studying these processes could help improve the way accurate and trustworthy information is communicated in the future — a responsibility that also lies with the media.
 

pwME are explicitly excluded from participating. It’s 2025 after all…
AI Translation:


Post-COVID: Study Investigates the Impact of Endurance Training

Magdeburg.
University Medicine Magdeburg is seeking participants for a study on the effectiveness of endurance training for individuals affected by post-COVID.

A study conducted by the University Clinics of Cardiology and Angiology as well as Psychosomatic Medicine and Psychotherapy in Magdeburg aims to determine whether regular endurance training benefits people with post-COVID. The study is looking for participants who have previously contracted COVID-19 and are currently suffering from fatigue. The researchers hope the study will yield new insights to improve current therapies and, in turn, enhance the quality of life for those experiencing long-term effects of COVID-19.

The research team is focusing on three specific questions: Does regular endurance training improve quality of life? Does it reduce fatigue in affected individuals? And what type of training is particularly beneficial? Sports physician Dr. Dörte Ahrens is leading the study and explains:
“So far, there is little solid evidence on effective treatment strategies for long- and post-COVID syndrome. Our goal is also to offer affected patients a sense of perspective, so they don’t feel left alone.”

Participants will be asked to carry out a self-directed training program over a period of three months and document it in a training diary. To support this, they will receive activity trackers and heart rate monitors. Comprehensive examinations will be carried out at the participating clinics before and after this period.

To be eligible for the study, participants must not have any other diagnosed condition that could explain their reduced physical capacity or symptoms. Unfortunately, individuals with a pacemaker, those who are pregnant, have atrial fibrillation, or suffer from Chronic Fatigue Syndrome (CFS) cannot take part in the study.

The study is funded by the German Heart Foundation.


Long-/Post-COVID​

The long-COVID syndrome refers to the persistence of physical, mental, and psychological symptoms that appear more than four weeks after a COVID-19 infection and cannot be explained by other causes. The post-COVID syndrome is defined by symptoms lasting longer than three months.

Contact for those interested in participating:
Outpatient Clinic for Sports Medicine and Prevention, University Clinic for Cardiology and Angiology Magdeburg
praeventionsambulanz@med.ovgu.de
 
They argue that the term "encephalomyelitis" suggests brain and spinal cord inflammation, which is usually not detectable in ME/CFS patients
Medicine's decision to only name diseases based on pathology has been massively disastrous. We keep getting bogged down in stupid details like this. It led to the invention of CFS, which is an even worse name, something that is completely misunderstood by capricious physicians who think it's smart to let millions of people go to waste in part because they pretend that things we have nothing to do with can be used to beat us down and maintain a state of criminal negligence. They keep trotting this out as if it's some valid argument, when all it does is emphasize how they are completely at fault, while insisting we are. What a disaster.

I don't know what drove that move, but a lot of medicine's failures to solve those mysteries can be traced back to it. Because problems can't be worked on before they are understood, and they can't be understood without being worked on. And clearly there is nothing we can do about it, it's all about power and we have none. It's revolting. A collective "look at what they're wearing", and it's cheered on.
 
Quarks published a 22min video documentary about a former kickboxing world champion who suffers from ME/CFS.


AI Summary:
Jenny spends about three hours daily in a hyperbaric oxygen chamber, totaling nearly 1,000 hours over her illness. Once very active, Jenny now lives with severe neuroimmunological disease ME/CFS, which began after a COVID-19 infection in 2022. At 35, she desperately wants to work, live, and be healthy again. The illness dominates her daily life, causing profound exhaustion, pain, and sensitivity to stimuli. Jenny longs to experience simple joys like inline skating again, representing freedom and normal life.
Before ME/CFS, Jenny was a five-time kickboxing world champion and professionally successful. Her symptoms started abruptly with a “crash” causing extreme fatigue, tremors, and cognitive impairment. Her diagnosis came months later after a long doctor search. ME/CFS shares some symptoms with Long COVID but is a distinct disease affecting the immune system, nervous system, blood vessels, and energy metabolism. It triggers chronic inflammation, dysregulates automatic body functions (heart rate, blood pressure, digestion), and mitochondrial dysfunction, leading to extreme, persistent fatigue.
No approved medications exist for ME/CFS; many treatments are experimental and off-label, including drugs like Mestinon and hyperbaric oxygen therapy (HBOT). HBOT helps increase oxygen supply in the body and brain, reducing brain fog and potentially halting disease severity. Jenny credits HBOT with saving her from a worse condition.
ME/CFS patients must carefully manage energy (“pacing”) to avoid post-exertional malaise (PEM), where symptoms worsen disproportionately after minimal activity. PEM can cause crashes lasting days to weeks and even permanent disability with repeated relapses. Jenny’s attempts at rehabilitation and physical therapy illustrate how easily overexertion worsens her condition despite medical guidance. She closely monitors heart rate as an indicator of energy limits.
Financially, Jenny’s illness has depleted her savings (around €45,000), despite earlier good income and private disability insurance. She currently relies on limited insurance and support from her parents while waiting for government disability benefits. About 650,000 people in Germany suffer from ME/CFS, costing the economy billions annually.
Socially, Jenny’s condition has narrowed her relationships to only the closest friends and family. Everyday activities and social outings are difficult or impossible due to fatigue and sensory overload. Nonetheless, she treasures meaningful moments like enjoying the sun on her face, the wind while skating, and spending time with friends.
Jenny’s story highlights the profound challenges of ME/CFS — the physical, emotional, and financial toll — and the importance of understanding, research, individualized therapies, and paced living for those affected.
 
Omer Van den Bergh from the Oslo Chronic Fatigue Network wrote a guest article for the Süddeutsche Zeitung.


All symptoms arise "in the head." Where else?
Guest article by Omer Van den Bergh
September 14, 2025, 3:51 PM | Reading time: 4 minutes

Are the symptoms real or merely psychological? This false dichotomy is still often invoked when dealing with ailments of unclear origin. Yet the two cannot be separated. A better approach is needed to help patients—whether they're suffering from COPD or Long Covid.
AI Summary:
The article challenges the outdated and false dichotomy between “real” (physical) and “psychological” symptoms — a mindset still prevalent in medicine and public discourse, especially around conditions like Long Covid, chronic fatigue, and fibromyalgia.

Van den Bergh argues that all symptoms arise in the brain, even those with clear physical causes, such as pain from a physical injury. The brain integrates signals from the body with emotions, memories, expectations, and context — meaning symptoms are never purely physical or purely mental.

He points out:

  • Psychological factors often amplify or prolong symptoms.
  • In chronic conditions, emotional and cognitive processes play a growing role over time.
  • Studies show that symptoms can persist even when the underlying physical cause has resolved.
  • Effective treatments, such as self-management programs and cognitive behavioral therapy, often work not by curing the physical illness, but by changing how patients perceive and cope with symptoms.
The article criticizes the medical system for clinging to a Cartesian (mind-body split) view that leads to:

  • Misdiagnosis or over-medicalization
  • Patient frustration
  • Stigmatization
  • Missed opportunities for effective psychological interventions
Van den Bergh calls for a truly biopsychosocial approach in medicine, where symptom perception is studied just as seriously as disease mechanisms, and psychological treatment is integrated into care from the beginning. This shift could improve patient outcomes and reduce societal costs.


Key Takeaway (in a sentence):

"Symptoms aren't either real or imagined — they are real, and they always involve the brain."

 
  • Studies show that symptoms can persist even when the underlying physical cause has resolved.
If the physical cause has resolved, there would be no symptoms. Unless they believe that something non-physical can cause symptoms, which would be the definition of dualism.
  • Effective treatments, such as self-management programs and cognitive behavioral therapy, often work not by curing the physical illness, but by changing how patients perceive and cope with symptoms.
As always, they are proposing treatments that have been repeatedly and conclusively shown to not work.

This is just propaganda.
 
Omer Van den Bergh from the Oslo Chronic Fatigue Network wrote a guest article for the Süddeutsche Zeitung.



AI Summary:
A better approach is needed to help patients
Van den Bergh calls for a truly biopsychosocial approach in medicine, where symptom perception is studied just as seriously as disease mechanisms, and psychological treatment is integrated into care from the beginning
You literally have had that for decades. You have that right now! They control everything, pretend that it's working, pretend to call for something better, and that "better" thing is always exactly what they've been doing for decades!
This is just propaganda.
It's fraud, criminal. They lie and keep lying about everything they do. This is completely mad!

Plus: a bonus No True Scotsman fallacy. Could they explain what is the difference between a biopsychosocial approach that they have been doing for decades and forced into standard practice despite zero evidence of usefulness, and a "true" biopsychosocial approach? Of course not, because they are the same thing. Always the same thing, going on for over a century of failure and misery and early death for millions, and all they have is lies. Shows how humans will lie about anything and everything if they are encouraged to. Even if it leads to destroying millions of lives. Lies everywhere.
 

Article by RiffReporter.de (I couldn’t get behind the paywall)

AI Summary

Despite being diagnosed with "Post Vac", no recognition: "Where is the societal outcry?"

Four university hospitals link Erika Seebacher's illness to a COVID-19 vaccination. However, authorities do not acknowledge this as a vaccine-related injury. Why?

On paper, the case seems clear. Four university hospitals have confirmed that Erika Seebacher’s symptoms are related to her COVID-19 vaccination. These are not private medical assessments, but official reports from four different teaching hospitals. This is likely the strongest evidence a patient like Seebacher, from Stuttgart, could present when applying for recognition of a vaccine injury.

However, the decision does not lie with the university doctors, but with the authorities of the professional association and the pension office. Last year, both institutions rejected Seebacher's applications. A few weeks ago, her appeal against the pension office's decision also failed.

Few "Post Vac" cases are as well documented as hers. This case symbolically represents all those who became ill after vaccination and are fighting bureaucratic barriers without making any progress, even though politics and laws promise assistance.
 
Germany’s “Reha” clinics aren’t set up for Long COVID. And patients are reporting harm.

The Sick Times spoke with twelve people who went to Reha and found that, on top of being pressured to partake in exercise-based therapies that can make their disease worse, patients at these centers faced reinfection with SARS-CoV-2 and other pathogens during the ongoing pandemic. They regularly experienced gaslighting from medical providers and fellow patients alike, many of whom falsely claimed Long COVID was “in their heads.” Others fought to avoid rehab, citing the risk of permanent health deterioration.
In response to questions about their Long COVID protocols, spokespeople from multiple German insurance providers said that rehabilitation services are tailored to specific patients’ needs. “Many affected individuals fear that rehabilitation facilities will not adequately accommodate their limited tolerance for exertion. However, some rehab centers now have concepts tailored to the specific needs of people with Post-COVID syndrome,” said a spokesperson from Medizinischer Dienst Bund.
They just lie about everything. There is no system in the world, professional or otherwise, that can achieve anything by holding on to delusional fantasies detached from reality. It doesn't even matter that rehabilitation has never been shown to work. They don't care. Not one bit. It's all fake.
 
AI Summary:

Queers with Long Covid: Disappearing from the Scene


LGBTIQ* individuals with ME/CFS have often lost their connection to the queer community since the Covid pandemic. Their illness remains largely invisible, and accessible, barrier-free spaces are rare. Donna (name changed), who developed ME/CFS after a Covid infection in 2020, feels increasingly isolated from the queer scene. Her social circle has shrunk to a few empathetic people who understand her situation. “I’m no longer considered or invited,” she says, as she often has to cancel plans. She only manages to attend two queer events per year, which she carefully plans in advance and takes extreme caution to avoid a crash. She advocates for more accessible spaces for chronically ill queers.

Pacing: A New Life Rhythm

An important approach for managing ME/CFS is “Pacing,” which involves carefully conserving energy to avoid overexertion and setbacks. Stephan Hellweg, an actor living with ME/CFS since 2021, has integrated this approach into his daily life. To avoid crashing from too many activities, he strategically plans his energy use and takes regular breaks. Stephan has also applied for disability benefits to maintain economic independence and work when possible.

Healthcare Gaps

A major issue for ME/CFS sufferers is the lack of research and uncertainty about treatment options. As there are no widely accepted, effective treatments, Donna and Stephan are calling for more investment in research. Stephan references the lessons learned by the LGBTIQ* community during the AIDS crisis and stresses the importance of healthy allies advocating for the needs of chronically ill individuals. Public attention and political pressure are essential for creating change. Actions like protests around “ME/CFS Awareness Day” are necessary to raise awareness on the issue.
 

1 hour podcast about The Long Covid File: Why can no one find the cause?.
I asked the AI to specifically focus on mistakes, problems and possible improvements for the future. Otherwise the results would be pretty basic and boring for our audience. In the hopes to catch hallucinations, I asked for timestamps.
AI Summary
Title:
The Long Covid File: Why can no one find the cause?


Mistakes and Problems in Current Care​


  • 00:04:15 - Many patients with Long Covid and ME/CFS are not taken seriously in medical care; they face stigma, lack of symptom recognition, and long diagnostic waits.
  • 00:10:30 - The proliferation of costly, non-evidence-based blood tests and diagnostic offers online misleads patients but lacks scientific validation.
  • 00:12:45 - The absence of reliable biomarkers forces doctors to rely on symptom-based diagnoses, which complicates clinical confirmation and frustrates patients.
  • 00:15:00 - Standard blood tests and imaging usually show no clear abnormalities, despite patients feeling acutely ill, which contributes to disbelief and frustration in care settings.
  • 00:18:20 - Widespread stigmatization of patients severely undermines their care and adds emotional burden.
  • 00:22:10 - Many expensive private testing protocols are commercialized without clear clinical utility or public peer-reviewed validation.
  • 00:25:40 - Research findings that could clarify diagnostics are often kept exclusive to private practices or not openly published. [[they mention a study that has been criticted here by Scheibenbogen et al.]]
  • 00:28:50 - The healthcare system lacks sufficient multidisciplinary frameworks capable of addressing the complex and heterogeneous nature of Long Covid and ME/CFS.

What Is Going Wrong?​


  • 00:30:20 - Patients with vague, multi-system symptoms often encounter disbelief and are sometimes labeled as having psychological issues.
  • 00:33:15 - This leads to underdiagnosis and delayed diagnosis, with symptoms dismissed as psychosomatic in parts of the medical community.
  • 00:38:00 - Expensive diagnostic panels are marketed but remain unclear in their diagnostic value for Long Covid.
  • 00:41:30 - The lack of a definitive diagnostic biomarker or imaging test increases uncertainty and hampers targeted treatment development.

Suggested Improvements and Future Directions​


  • 00:45:00 - Calls for scientific findings about biomarkers and diagnostic methods to be published openly and made accessible to all healthcare providers.
  • 00:47:30 - A need for interdisciplinary, symptom-oriented care networks that can handle the multifaceted symptoms presented by Long Covid and ME/CFS patients.
  • 00:50:45 - Active efforts to combat stigmatization in medicine and increase awareness about the seriousness and complexity of these conditions.
  • 00:53:00 - Development and widespread use of clear, evidence-based diagnostic and therapeutic guidelines.
  • 00:55:10 - Ongoing research to identify reliable biomarkers that enable objective diagnosis, which would also aid therapeutic advances.
 

AI Summary:
Chronic Fatigue Syndrome (ME/CFS): A Mother's Struggle for Her Son's Healing

Chronic Fatigue Syndrome (ME/CFS) predominantly affects young people, and the number of cases has more than doubled since the COVID-19 pandemic. Despite its growing prevalence, the illness remains underrecognized and often dismissed by both the medical community and policymakers. This article tells the story of Lilli Hallmann, a mother from Weimar, Germany, whose son Leander has been severely affected by ME/CFS, and her fight to raise awareness and find treatment options.

The Beginning of Leander's Struggle​

Leander's story began at the age of 12 after a routine bike race. Previously a passionate athlete and active student, he was found by his mother in a state of collapse: feverish, with a racing pulse, and severe pain. That was the day his life—and his family's—changed forever. Over the next year, his condition deteriorated, and it took another year and a half for doctors to diagnose him with ME/CFS. The delay in diagnosis added emotional weight to the family's struggle.

Isolation and the Need for a Soundproof Box​

Leander's condition led to severe isolation. He now lives in a specially designed soundproof box to shield him from the smallest environmental stimuli, such as noise, light, and smells, which can trigger intense pain and inflammation. As a result, his daily interactions with his mother are limited to short moments when she brings him food or medication, often communicated via notes. Physical contact, such as hugs, has not been possible since June 2024.

Lilli Hallmann's Changed Life​

Lilli's life has been entirely reshaped by her son's illness. She is now confined to their home, unable to leave unless Leander’s condition allows it. The isolation extends beyond Leander’s needs; she cannot have visitors, listen to loud music, or perform household tasks without extreme care to avoid disturbing him. Her entire existence revolves around managing her son’s illness, with small but meaningful moments of connection through letters from Leander’s friends and training partners.

Lilli has learned to adapt to a life where even her job has been altered. Though she cannot work as she did before, she is pursuing a doctoral thesis at the Bauhaus University on ME/CFS, aiming to contribute to the limited body of knowledge about the disease. In addition to her academic work, she has become an advocate, lobbying for better research funding and policy change.

The Struggle for Better Recognition and Treatment​

The fight for Leander’s recovery extends beyond their personal lives. Lilli actively participates in raising awareness of ME/CFS, contacting politicians and research institutions. She advocates for increased funding in research and faster approval of potential treatments. Although there are promising therapies available for conditions like Multiple Sclerosis, they remain inaccessible to ME/CFS patients due to bureaucratic hurdles.

Lilli’s frustrations are shared by many in the ME/CFS community, who feel sidelined by both the healthcare system and government. She points out that the economic impact of the illness, including lost productivity, amounts to billions of euros annually, yet the issue remains underfunded and overlooked.

A Call for Urgent Action​

Lilli Hallmann’s ultimate goal is simple: she wants a medication that will allow her son to return to his life. However, the lack of a curative treatment for ME/CFS leaves families like hers in a state of constant uncertainty. Lilli continues her advocacy work, hoping that increased public awareness and political action will lead to the development of effective treatments and, ultimately, a better quality of life for those suffering from ME/CFS.

As the disease continues to devastate the lives of countless individuals, the urgency of finding a solution grows. Lilli’s story is a poignant reminder of the challenges faced by ME/CFS patients and their families, as well as the pressing need for greater recognition, research, and support.
 

The german science magazine Spektrum der Wissenschaft features a theme week for Long Covid.

Overview and Preview of All Articles in Our Theme Week

September 22, 2025: Everyday Life with a Misunderstood Illness:

On the attempt to live with ME/CFS.
Showering, visiting friends, sitting up in bed: For people with ME/CFS, these activities suddenly become anything but ordinary. Dr. Natalie Grams is one of many affected by this condition. She talks about her daily life as someone in need of care, the battle against prejudice—and her own despair.

September 23, 2025: ME/CFS: "I am hopeful that we will soon have effective treatments."
ME/CFS is the most severe form of Long Covid, turning millions of people worldwide into care-dependent patients. Carmen Scheibenbogen from Berlin's Charité talks about the causes, the insufficient healthcare provision in Germany, and the hope for medications.

September 24, 2025: Long Covid in Adolescence: The Lost Childhood Must Wait
"Just being here today is exhausting, Mom." When long-term effects persist after a COVID infection, nothing feels certain anymore. An exploration of the daily lives of children and adolescents with Long Covid and ME/CFS.

September 25, 2025: Reactivated Viruses: The Hidden Danger
The coronavirus can awaken dormant herpesviruses. What is known about their role in Long Covid, and what this might mean for treatment.

September 26, 2025: NeuroCOVID: Attack on the Brain
Interview with Joachim Schultze, coordinator of NeuroCOV. This European research project aims to better understand the neurological and psychiatric complications caused by COVID-19.
 
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