News from Germany

[rvallee]

Christian Zacharias, a German pwME, has published a book titled "Everything is psychosomatic".

Christian has severely deteriorated.

ME/CFS in Hamburg: 82-Jährige verzweifelt an Pflege ihres Sohnes – niemand kann ihn aufnehmen

Seniorin musste Pflege des immer schwerer am Chronischen Fatigue-Syndrom Erkrankten übernehmen. Bis sie selbst nicht mehr konnte.

www.abendblatt.de

https://archive.ph/5S6wz

It is Friday, February 20th, which marks the end of an unimaginable ordeal. On this day, six men carry Krista Zacharias's son Christian in a kind of carrier down the narrow spiral staircase of her apartment. At the bottom, the ambulance is waiting to him to the palliative care unit of the Asklepios Clinic in Altona take . Christian Zacharias suffers from Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome , or ME/CFS for short , a severe chronic multisystem illness for which there is currently no cure.

 

[Chandelier]

Menschlichkeit im Gesundheitssystem: "Sie müssen abnehmen", sagte der Chefarzt vor versammelter Mannschaft

Beleidigt, belächelt, ignoriert: Nikola Biller-Andorno wertet aus, was Menschen als Patienten erleben. Die Ethikerin sagt: Medizin muss unbedingt menschlicher werden.

www.zeit.de

Insulted, ridiculed, ignored: Nikola Biller-Andorno analyzes what people experience as patients. The ethicist argues that medicine urgently needs to become more humane.​

Die Zeit published an 1600-word interview with

Nikola Biller-Andorno​

The physician and philosopher heads the Institute of Biomedical Ethics and History of Medicine at the University of Zurich. In Switzerland, she has built a database of patient narratives. On a new platform—No Longer Patient—she now aims to promote exchange between patients, relatives, and professionals in order to improve care in the healthcare system.​

Spoiler: AI Summary of the interview

Medical ethicist Nikola Biller-Andorno has spent a decade collecting patients’ stories and finds that many feel ignored, humiliated, or not taken seriously in everyday medical care. While serious medical errors occur, patients often recall “small” experiences—poor communication, lack of empathy, or chaotic coordination—that undermine trust. She argues that healthcare focuses heavily on technology and efficiency but neglects human interaction. Biller-Andorno calls for stronger patient voices and more democratic participation in healthcare, including platforms where patients, relatives, and professionals can share experiences to identify systemic problems and improve care.

 

[rvallee]

ME/CFS: Welcome to the worst-case scenario

ME/CFS nach Corona war ein Worst Case mit Ansage - Wissens-Kolumne von NANO und Terra X

Hunderttausende leiden nach einer Corona-Infektion an Langzeitfolgen. Die Patienten und ihre Beschwerden werden jedoch weitgehend ignoriert.

www.zdfheute.de

The fears have come true: Covid-19 has left hundreds of thousands in Germany with long-term health problems. And now they are largely being ignored.

This is the new world we now find ourselves in. According to the National Association of Statutory Health Insurance Physicians, there were 250,000 ME/CFS treatment cases in Germany before the pandemic ; today, there are 620,000. Young people and those in their 30s are disproportionately affected. The worst fear during the pandemic—a permanent chronic illness affecting hundreds of thousands in Germany—has come true.

 

[V.R.T.]

ME/CFS: Welcome to the worst-case scenario

Brilliant title.

 

[rvallee]

Brilliant title.

Indeed. I have harped a lot about how this has been predicted and it frustrates me how it's so rare to say it. It was predicted, and this is the worst-case scenario, especially the response from experts and governments. It doesn't matter all that much if it's 1M, 10M or 1B, it's that nothing is being done and the same old failure, the worst-case scenario, continues to dominate completely. Sure it would be worth if 10 more people had their lives ruined by this, or 100, or any number, but it's not the precise number itself because it's already so huge as to be unforgivable negligence.

There is extensive written record of this! But it makes zero difference. Being right or wrong seem to make zero difference, only cultural trends do. In the general public this can be excused, but this is even below those standards, because most people would be outraged if they learned the truth, everyone who does is. It's a cover-up, deliberate, calculated and whose disastrous outcome is obvious.

 

[V.R.T.]

In the general public this can be excused, but this is even below those standards, because most people would be outraged if they learned the truth, everyone who does is. It's a cover-up, deliberate, calculated and whose disastrous outcome is obvious.

Indeed.

 

[OrganicChilli]

"PEM": What lies behind the mysterious symptom and what those affected should absolutely avoid.

More biobabble from Germany. Deformed blood cells due to spike protein - whatever happened to pwME whose ME/CFS wasn't triggered by covid??? Also malfunctioning mitochondria blah blah.

What can be said with certainty about what happens in the body during PEM?

Microvascular changes have been demonstrated: The small vessels are unable to efficiently transport oxygen to the periphery, for example, to the skeletal muscles. In many patients, the red blood cells are deformed. Normally, they resemble red gummy bears with a smooth surface. In people with PEM, they have numerous fringes, which further impedes oxygen transport. One hypothesis is that this could be damage caused by the spike protein of SARS-CoV-2 viruses. It has also been shown that oxygen binds more tightly to hemoglobin, the red blood pigment, and is released less effectively. Microcirculation is thus impaired, and we also observe a malfunction of the mitochondria , the cell's powerhouses. Certain metabolic pathways simply cease to function after stress.

Also mentions viral persistence.

Why does the deterioration typical of PEM often occur with a time delay, sometimes only two days after exposure?

Our hypothesis is that this is due to the interaction between metabolism and the immune response. Elevated lactate levels trigger inflammation and thus activate the immune system. However, in post-infectious patients, the immune system is already constantly engaged because viral remnants may have remained in the body after the acute infection. Now it must also react to a stress situation that would have long since resolved itself in healthy individuals. This leads to an exaggerated immune response – which takes some time to take effect.

Uses PEM and POT interchangeably.

Instead of pushing beyond pain limits for the sake of training effect, people should manage their energy during pacing so that they always remain below their exertion limit. How is that achieved?

This is difficult in everyday life, but there are aids available. Compression clothing and increased salt intake, for example, help patients who are prone to circulatory problems. Breathing exercises that stimulate regeneration—such as cyclical sighing—are also a key tool.

Heart rate increase leads to PEM and we need to rehab bedridden patients...

These individuals need heart rate-controlled programs that incorporate as much activity as possible without worsening symptoms. But there are also severely affected individuals who are bedridden. We need to help them progress from being in bed to sitting and eventually walking, or, in the case of children, to do schoolwork for half an hour – we currently lack such programs for them. It's important to note that we cannot yet definitively say whether frequent PEM triggering leads from a mild to a severe condition, i.e., whether it causes permanent deterioration. Therefore, those affected must be very careful and not simply try things out haphazardly. At the same time, they must not be afraid to push themselves to their limits.

Christian Puta's background is in sports medicine. According to some of the comments on X some doctors try to diagnose ME/CFS with hand grip strength tests. I suspect Puta will receive a significant amount of grant money over the next few years...

I'm honestly shocked at how bad this is and I wish he got pushback from German advocacy groups. Unfortunately, he's one of the more prominent researchers and a speaker at the ME/CFS research foundation conference.

 

[Chandelier]

(m+) Krankheit bisher unheilbar: Unternehmer spenden Millionen für die ME/CFS-Forschung

Rund 650.000 Menschen in Deutschland sind an ME/CFS erkrankt. Betroffenen fehlt oft jede Energie. Weil die Krankheit kaum erforscht ist, übernehmen wohlhabende Familien, was der Staat nicht schafft. Sie spenden Millionen, gründen Stiftungen – und kämpfen für ihre Angehörigen.

www.manager-magazin.de

Paywalled.

How entrepreneurs take on the fight against a still incurable disease

Around 650,000 people in Germany suffer from ME/CFS. Those affected often lack all energy. Because the illness is barely researched, wealthy families are stepping in where the state falls short. They donate millions, establish foundations — and fight for their loved ones.