News from Germany

V.R.T. said:
It would be a real shame if Charite joined the pantheon of researchers who decided 'it's psychosomatic' the minute their pet theory didn't pan out.
Click to expand...
There’s no need to worry about this.
The Charité is huge and some of the other departments always held a very psychosomatic perspective on ME/CFS.
See this interview with neurologist Prof. Dr. Harald Prüß from 2024 as an example:

https://s4me.info/threads/news-from-germany.11006/post-561079

Hutan

Post in thread 'News from Germany'

lycaena said:
ME/CFS: Leading neurologist criticizes numerous misdiagnoses of multisystem disease
Click to expand...
Gosh, that was a roller coaster. Good, bad, ugly, confused...
we know clear risk factors - women with previous mental illnesses, for example, are more likely to develop ME/CFS.
Click to expand...
In addition, fatigue – one of the most common symptoms of ME/CFS – is also widespread in the healthy normal population. It affects up to ten percent of people, and at a level of severity similar to ME/CFS. It is therefore not always easy to recognise what is special about it compared to other illnesses
Click to expand...
...
  • Like
 
Last edited:
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:
 
Last edited:
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.​
 
You must log in or register to reply here.
Back
Top Bottom