News from Germany

sibylledahrendorf.jimdofree.com

LABYRINTH Aufruf / Call

Aufruf zur Teilnahme I Call for Participation Documentary "Labyrinth" (AT) English see below, please The participation of those affected who are not from Germany is also expressly welcomed.
sibylledahrendorf.jimdofree.com sibylledahrendorf.jimdofree.com
Call for Participation
Documentary "Labyrinth" (AT)
The participation of those affected who are not from Germany is also expressly welcomed.
Click to expand...
English:
LABYRINTH, a new documentary film is in the making!

With people who are severely and profoundly ill, housebound and bedridden, struck to the core by complex chronic illnesses and falling through every crack in the healthcare system. The desperate cries for help are increasing, and so are the deaths. Yet, as always, nothing happens.



These illnesses include, among others, all those that are devastating across multiple systems and consistently ignored by the system, such as chronic Lyme disease, including Bartonella, Babesia, chronic infections of all kinds, fluoroquinolone toxicity, other forms of poisoning (medications, heavy metals, etc.), vaccine injuries, Myalgic Encephalomyelitis (MEcfs), Long Covid, Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Small Fiber Neuropathy, connective tissue disorders such as hypermobile Ehlers-Danlos Syndrome (hEDS), other Ehlers-Danlos Syndromes (EDS), Marfan syndrome, the “Neuro-EDS” complex, Craniocervical Instability, as well as the possible insidious interconnections between them. Many have many things; not everyone has everything.



Production: Filmgalerie 451, Frieder Schlaich, and me as the writer, working from a lying-down position.



The only perspective that matters in this film is that of those affected. There will be no additional filming. The film will consist solely of photo and video material from those affected themselves, as well as from their relatives and/or close friends who care for them. Parents of sick children are also invited to take part. Especially when they have been abandoned by the system, when, for example, palliative care is denied to them and/or they are confronted with accusations of Munchausen by Proxy — the grave and unjustified accusation that they are fabricating or deliberately causing signs of illness in their child. I know that in these situations it is often extremely difficult to speak out.



Raw, out of focus, shaky if need be, but direct and up close — I want to show the cruel everyday reality of those affected and their families, but also those who lie alone at home; to bring the horrific neglect into view, and the fact that, to this day, severely and profoundly ill people are left alone at home without any adequate care whatsoever. Invisible to the world outside and still chronically ignored. In the labyrinth of suffering and distress, the labyrinth of searching for help, left completely alone and thrown back upon themselves.



We would very much like to include your photos and videos!



And this is how:



A. > Photos



Portraits, faces, in bed, on an IV, in a wheelchair, point-of-view shots, from the side, from above, straight on, full shots, close-ups — whatever comes to mind, everything that “represents” your severe illness: at home, during medical transport lying down, etc. (Please no writing/text in the photos.)



Maximum 3–5 photos per person (in good resolution, please).



B. > Video clips



The same applies to video clips: you can film yourselves with your phones — the view of the curtains, during medical transport lying down, in the dark, looking down at your body, your legs, the view from where you are — but of course also your face, silently or speaking and answering the following questions (or some of them).



You can speak directly into the camera — PLEASE record horizontally/landscape, this is important — but you can also show point-of-view shots from your perspective. Family members or loved ones can also speak on your behalf.



Questions for the video clips:



1. Please briefly introduce yourself. You can use a pseudonym. Name, age, where are you right now as you record this, and why?



2. What symptoms do you have? Please feel free to list the whole range, including symptoms that are often not named or spoken about. Feel free to find your own words to describe your symptoms.



3. What diagnoses do you have? Please spell out abbreviations — for example, if you say “POTS,” please also say “Postural Orthostatic Tachycardia Syndrome,” etc. It can absolutely be a whole bundle of diagnoses and suspected diagnoses. What medical help are you receiving?



4. How long have you been ill? Please include the year. How old were you when it all began? Did it start gradually or suddenly, with one hit or several? Please name all triggers as well, including those you suspect and those that may go further back, including those that have not been confirmed by doctors.



5. What have these triggers and illnesses done to you? What have they taken away from you?



6. What is the worst thing you are experiencing, or have experienced, with your illnesses? Also in relation to doctors, medical care and, of course, yourself in isolation? What is your daily life situation?



7. What does the future look like for you?



8. The word “labyrinth” — in relation to your situation, what associations does it bring up for you? Please include the word “labyrinth” in your answer.



9. And anything else that is on your heart.



Please try to keep each video clip to no longer than 3–5 minutes.



Please send video clips exclusively via WeTransfer or other file-transfer services.

Photos via email and/or WeTransfer.



In the email, please MAKE SURE to include:



1. We need your real name in the email. Your real name will not be published. Please give us the name under which you would like to appear in the credits. A first name is completely sufficient if you do not want your real name published — that is absolutely no problem.



2. Your age AND the year you became ill. What diagnoses do you have? Including #MECFS, #LongCovid, #Lyme, #Fluoroquinolone toxicity, #PostVac and others. Of course, one person can be affected by several diagnoses.



3. Please list any additional distinct illnesses/conditions, such as those mentioned above: #POTS (Postural Orthostatic Tachycardia Syndrome), #SmallFiber, #MCAS (Mast Cell Activation Syndrome), and of course Craniocervical Instability #CCI and/or #EDS and many more — whatever it is that afflicts you.



4. Please state the triggers.



5. Please provide a written description of your worst symptoms. Feel free to find your own words to describe them.



6. If you wish, include a very brief (!!!) description of the course of your illness — but only if you do not talk about it in your video clip.



7. Please include a short sentence confirming that you consent to the publication of the photo(s) as part of the documentary film “Labyrinth” (working title). If you consent to the publication of your first name, your full name, or only an initial such as “S.”, please state this as well. Please also provide your city/town and country.



8. Please send all of this via email to: labyrinth@filmgalerie451.de



Please send videos/videoclips via WeTransfer to the email address above (WeTransfer — up to 2 GB per transfer free of charge) or via other file-transfer options e.g. Swisstransfer. You can also send us Dropbox links from which we can download the files.



Submission deadline: September 30, 2026



Family members and friends of those who have died are also very welcome to send us photos or video clips, including the name — and, if desired, a pseudonym — as well as the year of birth and year of death of the person who passed away. Please also include all (!) diagnoses and triggers. And please state whether we may use their first and last name, or first name only. Thank you so much!



Update on the documentary “Labyrinth”:

I am working on it and, so to speak, pre-sorting the video clips I have received so far, at a snail’s pace, as much as my nonexistent strength allows. A professional film editor, an artist in her field, will later bring all of this into a form. Perhaps we will also use animation, alter some of the material, and approach the whole situation in a somewhat more experimental way.



The planned length is approximately 90–120 minutes. Publication is planned via the internet.



I hope I can keep going, and I am “looking forward” to your participation. I want to continue giving this horror a face.



And please don’t be angry with me if I am unable to respond adequately to your emails. I absolutely have to conserve and focus what little strength I have left, above all for this project.



In any case, we will do our very best.



Thank you to all of you, and thank you also to Frieder Schlaich / Filmgalerie 451 for doing this!



And all of you, please take good care of yourselves.
Click to expand...
 
www.n-tv.de

Mehr Patienten mit ME/CFS entscheiden sich für assistierten Suizid

Die Zahlen sind erschreckend: 650.000 Menschen in Deutschland leiden an ME/CFS, einer besonders schweren Form von Long Covid. Die Verzweiflung unter den Erkrankten ist so groß, dass manche nur noch einen Ausweg sehen.
www.n-tv.de www.n-tv.de
Google Translate

The trend is “massively increasing.”​
More patients with ME/CFS are opting for assisted suicide.​
19 August 2026​
Assisted-suicide organization are concerned: More people suffering from ME/CFS are opting for assisted suicide. As Stern reports, six organizations and providers that organize and accompany assisted suicides confirmed that the numbers are rising. ME/CFS is a particularly severe form of Long COVID.​
​
“We are receiving a frighteningly large number of inquiries from ME/CFS patients,” Matthias Thöns, a palliative care physician and managing director of Leidfrei Sterben, a company that arranges assisted dying, told Stern.​
Those affected are desperate.​
The company Linus reports receiving 200 inquiries, many of them from young people. The trend: “Massively increasing.”​
​
Among the inquiries are also applications from parents on behalf of their underage children.​
“One can imagine how desperate the situation must become for someone to support the death of their own child,” Linus managing director Linus Schubert writes to the magazine.​
However, Linus does not provide assisted-suicide services to children, even though this would be legally possible.​


The psychotherapist Bettina Grande, who has been treating people with ME/CFS for years, tells Stern: “For these people, the thought of assisted dying is not a sign of a classic mental health crisis.​
Rather, it is the result of often years of medical dead ends and hopelessness.” Grande says it is deeply distressing that some severely ill people find it easier to gain access to assisted dying than to appropriate care, medical treatment, or social support.​

Original paywalled article in Der Stern:
 
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www.mittelhessen.de

Post-COVID: Online-Seminare starten

Das Universitätsklinikum Marburg veranstaltet ab Mittwoch, 19. August, drei Online-Seminare zum Thema Post-COVID. Prof. Bernhard Schieffer, Direktor der Klinik für Kardiologie, Ang
www.mittelhessen.de www.mittelhessen.de
Post-COVID: Online Seminars​
​
Marburg. Starting Wednesday, August 19, Marburg University Hospital will be hosting three online seminars on the topic of Post-COVID.​
Prof. Bernhard Schieffer, Director of the Department of Cardiology, Angiology and Medical Intensive Care, will explore various aspects of post-infectious illnesses under the title “understand.support.together.”​
​
The seminars will take place on Wednesdays at 3 p.m.:​
  • August 19: “What Happens with Post-COVID: Questions and No Answers?”
  • September 9: “Post-Infectious Illnesses – What Can We Do Today?”
  • September 30: “Post-COVID – How Can We Develop Better Treatments?”
The seminars are aimed at patients affected by the condition, as well as relatives and anyone interested. Registration is available via:​

Post-COVID Webinar

Erfahre mehr über BigBlueButton, die bewährte Open-Source-Lösung für Webkonferenzen, die eine nahtlose virtuelle Zusammenarbeit und Online-Lernerfahrungen ermöglicht.
webconf.hrz.uni-marburg.de
 
www.fr.de

STIKO ändert Empfehlung zur Corona-Impfung

Die STIKO hat ihre Empfehlungen zur Corona-Schutzimpfung angepasst. Die Altersgrenze für die jährliche Auffrischung wurde von 60 auf 75 Jahren angehoben.
www.fr.de www.fr.de
STIKO (Standing Committee on Vaccination) changes its recommendation on COVID-19 vaccination​
August 19, 2026​
​
…​
​
Until now, an annual booster vaccination against COVID-19 has been recommended for people aged 60 and over.​
The age threshold has now been adjusted: in future, COVID-19 vaccination will only be recommended for people aged 75 and over.​
Regardless of age, vaccination continues to be recommended for people with certain pre-existing conditions, including chronic respiratory, cardiovascular, liver and kidney diseases, diabetes, and cancer.​
 
nord.vdk.de

Pflegegrad-Verschärfungen: VdK ruft Mitglieder zum Handeln auf

Mit dem für 2027 geplanten Pflegeneuordnungsgesetz könnte sich der Zugang zu einem Pflegegrad deutlich erschweren. Der VdK Nord ruft seine Mitglieder deshalb dazu
nord.vdk.de nord.vdk.de

Wichtig:

Pflegegrad-Verschärfungen: VdK ruft Mitglieder zum Handeln auf​

Mit dem für 2027 geplanten Pflegeneuordnungsgesetz könnte sich der Zugang zu einem Pflegegrad deutlich erschweren.
Der VdK Nord ruft seine Mitglieder deshalb dazu auf, schnell noch einen Erstantrag zu stellen.



Machine Translation:
Tightening of Care-Level Eligibility: VdK Calls on Members to Take Action

The Care Reorganization Act planned for 2027 could make it significantly more difficult to qualify for a care level. VdK North is therefore calling on its members to submit an initial application as soon as possible.


The new law has not yet been passed, meaning that the current legal framework is still in effect. People in need of care and their relatives should take advantage of this opportunity. Many people delay applying out of embarrassment, fear of complicated applications, or the assumption that they are not entitled to support. However, applying for care benefits is not something to be ashamed of; rather, it is an important prerequisite for being able to remain in one’s own home for as long as possible.

Anyone who has been considering submitting an initial application for some time should therefore do so by December 31, 2026. Under the current understanding, anyone who is granted a care level this year will retain it even if the eligibility requirements are tightened at a later date. The appeal expressly concerns initial applications. Those who already have a care level, on the other hand, should carefully consider applying for a higher level, as this could also result in their care level being downgraded.

With its appeal, VdK North also aims to send a political message: Even if people in need of care may receive benefits less frequently and to a lesser extent in the future, their need for care will not disappear. On the contrary, they will need more rather than less support, which means that the draft legislation still requires fundamental improvements.
 
www.spiegel.de

Rettungskräfte versorgen mehr als 40 Erkrankte an der Elbphilharmonie

Betroffene klagten über Übelkeit, Schwindel und Erbrechen: An der Hamburger Elbphilharmonie ist es zu einem Großeinsatz des Rettungsdienstes gekommen. Das Essen eines externen Caterers wird verdächtigt.
www.spiegel.de www.spiegel.de

Emergency responders treat more than 40 people who fell ill at the Elbphilharmonie​

Those affected complained of nausea, dizziness and vomiting: A major emergency response by the ambulance service has been launched at Hamburg’s Elbphilharmonie.​
Food provided by an external caterer is suspected to be responsible.​

Food poisoning?
Come on, we’re clearly missing the professional insight and prowess of masterminds such as Simon Wessely – this is such a clear-cut prime example of mass hysteria!
 
Machine Translation:
For ME/CFS patients
Protection from sensory overload: Neumünster is developing a new emergency-care concept
In an emergency, every minute counts. But speed and hectic activity can have serious consequences for people with the multisystem disease ME/CFS.
Christoph Trockel, medical director of the emergency medical services in Neumünster, is currently developing an action plan designed to help emergency responders and patients in an emergency situation.
Von Gunda Meyer 29.11.2025
Click to expand...
The 52-year-old, who is also a specialist in anesthesiology at Friedrich-Ebert-Krankenhaus (FEK) Neumünster, came up with the idea because he repeatedly encounters patients with this disease during his work as an emergency physician.
Click to expand...
Guidelines for underlying conditions such as diabetes or Parkinson’s disease have long been part of emergency medicine. But what can emergency responders do when an ME/CFS patient is experiencing a medical emergency? “First of all, emergency responders need to have knowledge about this disease,” says Trockel. He wants to impart this knowledge through initial and continuing training. There will be in-person training sessions as well as e-learning programs.
Click to expand...
The emergency physician says that transporting people with as little movement as possible is something emergency responders are accustomed to when dealing with trauma patients. “There is also trauma lighting in the ambulance itself, which is a low-stimulus blue light,” he explains.

He adds that with ME/CFS patients, it is also helpful to consider which monitoring devices actually need to be connected. These can be switched to night mode so that they are not as bright. If in doubt, the ambulance siren could also be dispensed with in order to reduce noise.

“Caution is also required with some sedative medications, as they can lead to a worsening of the patient’s condition,” says Trockel.

However, Trockel says that raising awareness among emergency medical services alone is not enough if patients then end up in the bright lights amid the hectic environment of an emergency department. He therefore considers cooperation with hospitals or medical practices to be advisable. The concept is scheduled to be implemented by the emergency medical services in Neumünster as early as next year. Trockel also wants to take the initiative to the state level.
Click to expand...
 
From Christoph Ströck via Twitter:

Good news for our German donors, and hopefully also for WE&ME:

After a bureaucratic process that has dragged on for many months, the foundation has now officially been registered in Germany’s register of eligible recipients of donations.

This means that donations to WE&ME in Germany can, in principle, be claimed as tax-deductible contributions.

More detailed and official information on this will be provided by WE&ME in the coming weeks.​
 
rp-online.de

Mehr Fälle von ME/CFS seit Corona: Knapp 62.000 Menschen in NRW wegen schwerer Spätfolgen behandelt

61.557 Menschen wurden im vergangenen Jahr in NRW wegen der schweren neuroimmunologischen Erkrankung ME/CFS ambulant behandelt. Viele sind arbeitsunfähig und isoliert.
rp-online.de rp-online.de
Paywall.

Nearly 62,000 people in North Rhine-Westphalia treated for severe long-term effects​

By Maximilian Plück
August 21, 2026

61,557 people in North Rhine-Westphalia received outpatient treatment last year for the severe neuroimmunological disease ME/CFS.
Many are unable to work and socially isolated.
Click to expand...

The North Rhine-Westphalia Ministry of Health, headed by Karl-Josef Laumann (CDU), has now published data on how many affected people sought medical help for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).​
​
According to a response to a minor parliamentary inquiry by the FDP parliamentary group, 61,557 people in North Rhine-Westphalia had to receive outpatient treatment last year with the corresponding diagnosis.​
This is roughly equivalent to the population of a large municipality in the district, such as Bergheim, Wesel, or Herten.​
The minister is relying on data from the Associations of Statutory Health Insurance Physicians.​
 
From https://prof-stark-institut.de/forschung/

Machine Translation:
There is currently a small project underway with student interns who are distributing a questionnaire to document the unfortunately still widespread rejection of those affected within the medical field.​
This really needs to be documented.​
We have already received more than 1,000 responses.​
Please continue to share the questionnaire.​

From https://docs.google.com/document/d/1BIrFkFCtWVK7sD39nM1W6dzkZ9MnV9xB/mobilebasic

Research Project​

Dear Sir or Madam,

Many of you already know me as someone who has spent decades trying to develop evidence that ME/CFS is a neurological and immunological disease, in contrast to the still prevailing view that it is psychosomatic fatigue. We have been able to demonstrate dysregulation of the autonomic nervous system, with chronically increased sympathetic activation, as well as signs of inflammation in the brain using functional MRI. We are continuing our research with the aim of establishing these findings as future biomarkers.

In my encounters with people affected by ME/CFS, I unfortunately continue to hear, despite improved media coverage of the severity of the disease since the COVID-19 pandemic, that there is still a lack of knowledge within the medical field. This lack of knowledge does not lead to curiosity, but rather to a pigeonholing and dismissive attitude toward the very existence of the diagnosis and, in some cases, to deeply hurtful rejection.

I would now like to comprehensively and anonymously document these experiences of people affected by ME/CFS.

I would therefore like to ask for your support in a qualitative scientific study on the experiences of people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

Kind regards,
Prof. Stark

The study addresses the following research question:​

“How do people with an ME/CFS diagnosis experience the diagnostic process and their interactions with doctors, therapists, and institutions within the healthcare and social welfare systems?”

The aim of the study is to better understand the experiences and challenges of people with ME/CFS within the German healthcare and social welfare systems. In particular, the study seeks to document experiences with the diagnostic process, interactions with doctors and therapists, as well as experiences with health insurance providers, public authorities, and other institutions. The findings are intended to contribute to a better understanding of ME/CFS and to promote greater awareness among doctors, therapists, and institutions of the care situation and the barriers faced by people affected by the disease.

Participants are sought who:​

  • have a medically diagnosed ME/CFS condition (including a suspected diagnosis), and
  • are at least 18 years old; parents of affected children are also welcome to participate.
Participation is voluntary and completely anonymous via an online questionnaire. All data collected will be anonymized and used exclusively for the scientific study. As people with ME/CFS frequently experience Post-Exertional Malaise (PEM), participants are expressly encouraged to complete the questionnaire according to their individual level of capacity, to take sufficient breaks, and, if necessary, to interrupt or discontinue the survey at any time. The health and well-being of participants always takes priority.

The questionnaire can be accessed via the following link:​


I would be very pleased if you would participate in the study and share the link within your network with other people who have an ME/CFS diagnosis. Every response helps make the experiences of people affected by ME/CFS visible and strengthens the scientific foundation for better care and a greater understanding of the disease.

Thank you very much for your support and your valuable contribution to ME/CFS research.

Kind regards,
Juna Riemann
Staff member at the Prof. Stark Institute
Click to expand...
 
karin-kelle-herfurth.de

Genetische Evidenz für ME/CFS: Welche biologischen Spuren DecodeME sichtbar macht

DecodeME liefert robuste genetische Evidenz für ME/CFS. Was die Daten zeigen, wo ihre Grenzen liegen und welche Mechanismen noch offen sind.
karin-kelle-herfurth.de karin-kelle-herfurth.de
Google Translate

Genetic Evidence for ME/CFS: What Biological Traces DecodeME Reveals​

PUBLISHED ON AUGUST 20, 2026, BY DR. KARIN KELLE-HERFURTH
Click to expand...

Table of Contents
  • Key Takeaways
  • What Genetic Studies Can Answer Differently
  • DecodeME: Eight Genome-Wide Significant Risk Regions
  • The Combinatorial Analysis: A Different View of the Same Data
  • What Remains Open
  • What Does This Mean for the Discussion of “Biological Evidence”?
  • Further Reading
  • Further Paths in This Knowledge Architecture
Click to expand...
 
Professor Scheibenbogen’s presentation starts at 1h55mins:


“Long COVID” policy conference of the coalition parliamentary groups highlights the need for action

Video upload date: 07.07.2026

At the Berlin House of Representatives, a specialist conference on Long COVID, Post-COVID, Post-Vac and ME/CFS was held at the invitation of the health policy spokespersons of the coalition parliamentary groups. The event brought together people affected by these conditions, researchers, healthcare professionals and policymakers. The results once again demonstrate a clear need for action.

Bettina König, health policy spokesperson for the SPD parliamentary group:

“Our city urgently needs a reliable care structure for people affected by Long COVID, Post-Vac and/or ME/CFS. In particular, the care and living conditions of the most severely affected patients, some of whom have been bedridden for years, must be improved urgently and sustainably. It is unacceptable to us that seriously ill, bedridden people in Berlin are not receiving adequate medical care.”
The presentations and discussions made clear that, six years after the outbreak of the pandemic, Berlin continues to face major challenges, particularly with regard to medical care, scientific research and raising awareness of these conditions.

The conference also highlighted progress in supporting people affected by these conditions. The establishment of a counselling centre for people with post-viral illnesses has created an important source of guidance and support for those affected and their relatives. The counselling centre provides assistance with social and legal issues and represents an important building block in ensuring that people affected have access to information.

Both health policy spokespersons intend to continue the dialogue with people affected, researchers and the medical community and to work towards creating the necessary framework conditions for better healthcare, more research and greater public awareness.
Click to expand...
 
www.n-tv.de

Unternehmen zahlen Rekordsumme für kranke Beschäftigte

Noch nie mussten Firmen so viel für krankheitsbedingte Lohnfortzahlung zahlen - rund 85,6 Milliarden Euro. Höhere Löhne, mehr Beschäftigte und ein hoher Krankenstand treiben die Kosten. Um die Ursachen wird gestritten.
www.n-tv.de www.n-tv.de

Machine Translation:

Companies pay record amount for sick employees​
29 August 2026​
​
…​
This means that the nominal costs of continued wage payments due to illness have more than doubled within one and a half decades.​
In 2024, they amounted to €81.2 billion.​
​
…​
The institute attributes the increase, among other things, to higher wages and rising employment.​
The level of sickness absence also contributed to the higher expenditure.​
Since the introduction of electronic recording of certificates of incapacity for work in 2022, the sickness absence rate has risen significantly in statistical terms.​
However, it has not yet been conclusively established whether actual workplace absences have also increased at the same time.​
Nevertheless, the level is significantly higher than before the coronavirus pandemic.​

 
Post by German patient co-author Mirja Nicolas that made me laugh.

About Mirja:
Yann04 said:
Mirja — who by the way is a really great advocate for ME/CFS, for example she also authored a Rapid Response against that awful commissioned BMJ article about Severe ME
Click to expand...


@privilegienschreck.bsky.social​
​
Investigative journalism about medical violence be like: “This story isn’t about who’s right.”​
​
​
Hope AI replaces you.​
​
​
ChatGPT, what is false balance?​



A statement that @rvallee would probably wholeheartedly agree with.
 
Chandelier said:
61,557 people in North Rhine-Westphalia
Click to expand...
www1.wdr.de

Zahl in NRW fast verdreifacht: Warum ME/CFS viel ernster ist als "Erschöpfungssyndrom" klingt

Rund 61.600 Menschen leben in NRW mit ME/CFS, umgangssprachlich Erschöpfungssyndrom genannt. Ein starker Anstieg seit Corona.
www1.wdr.de www1.wdr.de


In 2014, there were still 15,700 people affected in North Rhine-Westphalia (NRW).​
According to the latest figures, nearly three times as many people have been suffering from the severe neuroimmunological multisystem disease since last year, 2025.​

 
www.spiegel.de

(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 www.spiegel.de
Paywall.

Current top story on spiegel.de:
Kim.WEBP
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
 
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taz.de

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 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
Click to expand...

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.
Click to expand...

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.
Click to expand...

… “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.
Click to expand...

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.
Click to expand...

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.
Click to expand...

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.
Click to expand...
 
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