News from Germany

[Chandelier]

Spoiler: Trigger Warning: Suicide

(S+) Sterbehilfe bei ME/CFS: Die letzten Monate von Kim Linke. Sie wurde 25 Jahre alt.

Kim Linke kämpfte jahrelang gegen eine Krankheit, die manche Mediziner noch immer nicht anerkennen: ME/CFS. Dann kämpfte sie darum, sterben zu können. Sie wurde 25 Jahre alt. Ihre Eltern erzählen, was sie bis zum Ende durchmachen musste.

www.spiegel.de

Paywall.

Current top story on spiegel.de:

Assisted Dying for ME/CFS

Kim Linke’s Final Months​

Kim Linke spent years battling a disease that some medical professionals still do not recognize: ME/CFS.
Then she fought for the right to die.
She was 25 years old.
Her parents recount what she had to endure until the very end.

By Nina Weber
August 30, 2026

 

[Chandelier]

Behandlung bei Long Covid: Es fehlt Geld und Vertrauen

In Hamburg soll eine Spezialambulanz die medizinische Versorgung Betroffener verbessern. Doch nicht nur an der Finanzierung hapert es.

taz.de

Machine Translation:

There Is a Lack of Money and Trust​

A specialist outpatient clinic is intended to improve medical care for those affected in Hamburg. But funding is not the only problem.

31 August 2026

A specialised outpatient clinic is to be established at the University Medical Center Hamburg-Eppendorf (UKE) for this purpose. However, it is unclear when this is supposed to happen, and funding has yet to be secured. Patient advocacy groups and the opposition are voicing criticism.

The proposed specialist outpatient clinic is part of a three-tier care model.
At the first level, general practitioners are to recognise the illness and oversee treatment, while at the second level, various specialists are to be involved in the treatment.
The third level is intended for particularly severe cases.
The specialised outpatient clinic at the UKE is to be responsible for levels two and three and is also intended to contribute to research.

… “Kidsmobil”, a Hamburg initiative. Through Kidsmobil, seriously ill children receive care in their own homes. So far, the project has been financed through donations and funding grants. Hamburg does not want to spend any money on it. According to the state government, health and long-term care insurers should cover the costs. But the insurers do not consider themselves responsible. The state government is now supposed to advocate for funding at the federal level.

Karen Ullmann of “Nicht Genesen Kids”, an association in which parents of affected children organise themselves, told the taz that psychosomatic diagnoses are frequently made at the UKE’s children’s hospital. “Almost every child we know has left with a psychiatric diagnosis.” Diagnoses made by other institutions are not recognised. This also leads to inappropriate treatment recommendations. For example, parents are advised to have their affected children engage in physical activity as a form of therapy, even though this can actually cause their condition to worsen. “The tiered model is wonderful, but it is of no use if the illness is not recognised,” Ullmann said.

The head of the medical center rejected the criticism of treatment at the UKE during the Health Committee meeting. He said that the hospital follows the applicable clinical guidelines. To avoid inappropriate treatment, he emphasised the importance of individualised diagnosis and treatment for severely ill patients. Implementing the tiered care model could achieve this, he said.

The Hamburg Parliament will decide on 2 September on the motion, which asks the state government to support the process constructively. The state government is to report on progress by the end of the year.

 

[Chandelier]

Spoiler: Trigger Warning: Suicide

(S+) Sterbehilfe bei ME/CFS: Die letzten Monate von Kim Linke. Sie wurde 25 Jahre alt.

Kim Linke kämpfte jahrelang gegen eine Krankheit, die manche Mediziner noch immer nicht anerkennen: ME/CFS. Dann kämpfte sie darum, sterben zu können. Sie wurde 25 Jahre alt. Ihre Eltern erzählen, was sie bis zum Ende durchmachen musste.

www.spiegel.de

Paywall.

Current top story on spiegel.de:
View attachment 34030
Assisted Dying for ME/CFS

Kim Linke’s Final Months​

Kim Linke spent years battling a disease that some medical professionals still do not recognize: ME/CFS.
Then she fought for the right to die.
She was 25 years old.
Her parents recount what she had to endure until the very end.

By Nina Weber
August 30, 2026

Spoiler: Trigger Warning: Suicide

From Bluesky, machine translation:

---

Mirja Nicolas @privilegienschreck.bsky.social​

I think this is the most shocking article I’ve read so far.​

It addresses the fact that Kim herself had to fight for recognition even on her deathbed, and that Kim’s way of dealing with dying was practically pathologized and led to suspicion.​

Horrible.​

---

 

[salin]

The author was in a bicycle accident and suffered a mild concussion.
I didn't know that post-concussion symptoms can last up to 5 years and may include the following:

• Difficulty concentrating and memory problems
• Dizziness
• Anxiety
• Sleep disturbances
• Depressive moods
• A feeling of being slowed down
• Irritability, restlessness
• Hypersensitivity to bright light or noise

"You feel emotionally unstable and unusually tired and exhausted, no matter how much you sleep—fatigue is the technical term for this... [...] What's really annoying for me, as someone who usually sleeps six hours, is that I'm still tired even after ten hours of deep sleep."

"Research is providing increasing evidence that the accident causes minor damage to the nerve pathways, disrupting communication between certain areas of the brain. “Such nerve damage is generally not visible in standard brain imaging,” says Andreas Gonschorek, chief physician at the Neurocenter at the Berufsgenossenschaftliches (BG) Klinikum Hamburg. “A great deal happens at the molecular level within the nerve cells after the accident, which we are not yet able to detect with our current methods.”

I don't know if this helps us in any way, but I found the parallels fascinating.

Was sogar Ärzte nach einem Sturz oft übersehen: „Postkommotionelle Symptome“ behindern die Genesung

Jeder Zweite bekommt nach einer leichten Hirnverletzung körperliche und seelische Probleme, so wie unsere Autorin. Warum die Suche nach den Ursachen so schwierig ist und was Betroffenen hilft.

www.tagesspiegel.de

(paywall)

 

[V.R.T.]

• Difficulty concentrating and memory problems
• Dizziness
• Anxiety
• Sleep disturbances
• Depressive moods
• A feeling of being slowed down
• Irritability, restlessness
• Hypersensitivity to bright light or noise

This sounds a lot like the symptoms of I've come to think of as my prodromal phase of MECFS, and I had quite a few head injuries/concussions around then. So maybe I didn't get MECFS until 2017 after all...

Whatever was going on with me, it does seem like there are some connections here that could be useful to explore.