News from Germany

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https://www.dnn.de/lokales/dresden/dresden-uniklinikum-baut-kinderbiobank-fuer-long-covid-forschung-aus-MTX2MAE4DFBDJE7DZ7YLSIWZME.html

Dresden Biobank Specifically Collects Samples from Children and Adolescents

A pediatric biobank for Long COVID research is being established in Dresden. Blood, urine, and hair samples are being collected there to help researchers better understand the causes of the condition.

Yes, they are also collecting samples from severe patients at home, let’s go!

According to the University Hospital, patient samples such as blood, urine, hair, as well as nasal and throat swabs, are being collected under strict quality standards and made available for research projects through a special allocation process. The goal is to identify new biomarkers, understand the causes and mechanisms of Long COVID–like illnesses, and ultimately develop targeted treatment approaches.

In line with guidelines for the collection of pediatric samples, a joint biobank infrastructure has been established at the Dresden and Freiburg sites, reports Dr. Nicole Töpfer. The physician at the University Hospital heads Pednet-LC, a federally funded network dedicated to researching post-infectious diseases in children and adolescents.

In the long term, the facility will be able to store up to five million different samples. At present, 220,000 samples are already stored.

Until now, the biobank’s primary focus has been on cancer therapy. With the establishment of the pediatric biobank, researchers also hope to achieve scientific breakthroughs in the study of rare diseases, according to Prof. Reinhard Berner, Head of Pediatrics and Adolescent Medicine at the University Hospital.

One special feature of the pediatric biobank is the possibility of collecting samples at home. Using specially designed self-sampling kits, even severely ill patients can participate in the research.

 

[Chandelier]

RiffReporter bleiben dran

Sechs fehlende Perspektiven. Sechs gute Gründe. Ein großes Ziel: unabhängigen Journalismus sichern, der Menschen Orientierung gibt.

www.startnext.com

Direct link for donations:

RiffReporter bleiben dran

Sechs fehlende Perspektiven. Sechs gute Gründe. Ein großes Ziel: unabhängigen Journalismus sichern, der Menschen Orientierung gibt.

www.startnext.com

Martin Rücker is a German journalist that publishes a lot of articles on ME/CFS.
He is part of the cooperative RiffReporter.
Many libraries in Germany offer free access to their articles.
A major source of funding has been lost and thus they are forced to run a crowdfunding campaign.

RiffReporter is under economic pressure. We are asking for support to ensure independent reporting on issues that affect people in their everyday lives – topics that other media outlets often drop far too quickly.

What is this project about?​

RiffReporter is an independent, ad‑free online magazine. We are not backed by a publishing house but by a cooperative of freelance journalists. What defines RiffReporter is this: our authors don’t chase quick headlines. They stay with the issues that matter — care work, Long Covid, women’s health, mobility, biodiversity, climate, science, and the digital public sphere.

RiffReporter has now reached a critical moment. A major source of funding has fallen through. We have already reduced costs, redistributed tasks, and streamlined our structures. Even so, we need additional support so that our authors can continue researching and reporting in the coming months.

That is why we are launching this campaign. Over six weeks, we will show why the topics our authors cover are essential to people’s everyday lives. Each week offers a different perspective:

1. For health that doesn’t leave anyone behind​

Illness changes families, work, finances, daily routines, and dignity. Our authors report on what people face when they must care for loved ones or when they fall ill with Long Covid or ME/CFS. They cover gaps in healthcare, chronic illnesses, family caregivers, and the question of what people need when the system leaves them on their own.

 

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[Chandelier]

"Nicht dasselbe Leben wie vor Long Covid": Schriftstellerin Ivna Žic gibt Einblicke

Wie geht die Gesellschaft mit Long Covid um, mit Menschen, die nicht mehr funktionieren? Darüber schreibt Autorin Ivna Žic in einem preisgekrönten Essay. Im Interview spricht sie über die Krankheit und ihre neue "Normalität".

www.hessenschau.de

The writer and theatre director Ivna Žic is affected herself and, in her award‑winning essay “Die Unversehrten”, she explores the illness in literary form.
She skillfully links it with themes such as capitalism and neoliberal health policy.
For this, she will receive the 2026 Wortmeldungen Literature Prize in Frankfurt on Friday.
The prize is endowed with 35,000 euros.

In the interview, she talks about Long Covid, formative trips to the USA and encounters with Trump voters, as well as her new “normality” after the coronavirus infection.

 

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"First Funding Guidelines for the 'National Decade Against Post-Infectious Diseases' published – Analysis and commentary" by the ME/CFS Research Foundation

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Das Bundesministerium für Forschung, Technologie und Raumfahrt (BMFTR) hat am 1. Juni 2026 erste Fördermaßnahmen der „Nationalen Dekade gegen Postinfektiöse Erkrankungen“ ausgeschrieben. Forschende in Deutschland können sich bis zum 2. September 2026 auf Projektförderung für klinische Studien...

mecfs-research.org



In german.

 

[Chandelier]

Long Covid: Landkreis Gifhorn lässt 13-jährigen Gymnasiasten im Stich

Warum eine Familie aus Meinersen für ihren Jacob auf die Zugspitze wandert und dadurch viel Kraft tankt. Wie ein Avatar helfen könnte.

www.braunschweiger-zeitung.de

Paywall

A family fighting for their right for a robot that would allow their son to participate in school.

Long Covid: District of Gifhorn Abandons 13‑Year‑Old Grammar School Student
Meinersen. Why a family from Meinersen is hiking up the Zugspitze for their son Jacob — and how the experience gives them strength. How an avatar could help.

“It was a good initiative,” says Anja le Campion.
Together with her husband Philippe and daughter Isabelle, she hiked up the Zugspitze.
Around 50 people took part in the project “ME/CFS pushes us to the top” to raise awareness for the severe illness that falls under the umbrella term Long Covid.
And awareness seems urgently needed, as becomes clear in her account.

…

One fact that also falls under the category of “abandoned” is something the mother only mentions at the very end of the conversation: “We’ve been waiting for a year for an avatar so that Jacob can take part in lessons.”
So far, she has only been sent from one authority to the next.
The grammar school student would very much like to see his class again, but the district of Gifhorn does not have an avatar — a telepresence robot.
The small device would at least allow virtual participation.
Jacob could join via tablet or smartphone and interact with classmates.
According to the association “Nichtgenesenkids,” the costs amount to around 4,500 euros for purchase and about 300 euros in monthly operating costs.

Two grammar schools have a need for a school avatar

The family and the school principal even contacted District Administrator Philipp Raulfs (SPD) directly, but so far nothing has happened.
When our editorial team asked on Monday, the district’s press office replied: “Our Department of Schools and Sports, or the district as the school authority, is already in contact with the school administrations of the Sibylla‑Merian‑Gymnasium Meinersen and the Humboldt‑Gymnasium Gifhorn.
Each of the two grammar schools has one student who cannot attend classes in person due to a long‑term illness.
Next week, further discussions will take place to clarify the conditions under which a telepresence robot can be used at school and how technical support or procurement can be handled. It is the district’s goal to make schooling in this form possible in the future.”

 

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ME/CFS Research Foundation Facebook:

Erstmals verursacht ME/CFS höhere gesellschaftliche Kosten als Long COVID.
Im Erstbericht vom Mai 2025 lag Long COVID noch knapp vorn: 32,2 Mrd. € gegenüber 30,9 Mrd. € (ME/CFS) für 2024. Das Update zeigt: Der Kostenschwerpunkt hat sich gedreht. Jährliche gesellschaftliche Kosten 2025: 32,8 Mrd. € für ME/CFS vs. 31,6 Mrd. € für Long COVID.

Dieser Wendepunkt war absehbar. Viele Long COVID-Betroffene entwickeln im Verlauf ME/CFS, die Genesungsraten sind extrem niedrig, und ME/CFS-Erkrankte sind im Schnitt schwerer und länger betroffen.

Die ME/CFS-Kosten steigen seit 2020 ohne Unterbrechung, von 20,9 auf 32,8 Mrd. €, allein höher als der gesamte Verkehrsetat des Bundes (27,9 Mrd. €).

ME/CFS ist keine Randerscheinung. Es ist die langfristige Krise innerhalb der Krise. Genau hier braucht es biomedizinische Forschung. Dafür setzen wir uns ein.

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For the first time, ME/CFS causes higher societal costs than Long COVID.
In our first report from May 2025, Long COVID was still narrowly ahead: 32.2bn € versus 30.9bn € (ME/CFS) for 2024. The update shows the balance has shifted. Annual societal costs for 2025: 32.8bn € for ME/CFS vs. 31.6bn € for Long COVID.

This turning point was foreseeable. Many Long COVID patients develop ME/CFS over time, recovery rates are extremely low, and people with ME/CFS are on average more severely and longer affected.

ME/CFS costs have risen without interruption since 2020, from 20.9 to 32.8bn €, alone higher than Germany's entire federal transport budget (27.9bn €).

ME/CFS is not a side note. It is the long term crisis within the crisis. This is exactly where biomedical research is needed. That is what we are working for.

#mecfsresearch #mecfsforschung #research #forschung #LongCovid #PostCovid #mecfs

 

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German video

 

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Den Familienalltag meistern mit ME/CFS - 2026 - Ein Ratgeber für erkrankte Eltern und ihre Familien | Hogrefe

Ratgeber für Familien mit ME/CFS: Alltag erleichtern, Energie steuern, Kinder stärken. Jetzt hilfreiche Strategien entdecken!

www.hogrefe.com

A book for pwME with children.

Machine translated:

Mastering Everyday Family Life with ME/CFS A Guide for Affected Parents and Their Families

Den Familienalltag meistern mit ME/CFS​

Ein Ratgeber für erkrankte Eltern und ihre Familien​

by Anne Ritschel, Verena Klingen

Parents with ME/CFS face the dual task of managing symptoms while also supporting their children’s development. This guide offers practical strategies for energy management, reducing daily burdens, and strengthening children’s resilience. It includes scientific background information, systemic and cognitive‑behavioral exercises, as well as helpful worksheets.

This guide is intended forarents living with ME/CFS, their partners and other family members, as well as professionals in the fields of medicine, psychotherapy, psychology, counseling, social pedagogy, child and youth services, disability support, and rehabilitation.

Blurb​

The neuroimmunological illness ME/CFS is far more than “fatigue”: people affected by ME/CFS experience a wide range of symptoms, but above all a profound intolerance to exertion, meaning that even minimal effort can worsen symptoms and severely impact daily life. Many affected individuals are parents and face the challenge of supporting their child’s healthy development while also attending to their own needs so their condition does not deteriorate.

This guide explains how everyday family life with ME/CFS can be made more manageable. Parents with ME/CFS learn to understand their energy levels and break the vicious cycle of overexertion and symptom flare‑ups. Children can be supported in experiencing safety, care, and positive moments despite the initially frightening nature of their parent’s illness. In addition, both ill and healthy parents are encouraged to draw on helpful sources of strength and to seek social support so the crisis can be navigated together.

The guide reflects the current state of research on ME/CFS and offers concrete exercises based on cognitive‑behavioral and systemic methods, which can be used independently by affected families or within counseling and therapy. Helpful worksheets can be downloaded from the Hogrefe website after registration.

Table of Contents​

Foreword … 7

1 The Clinical Picture of ME/CFS​

• 1.1 What is ME/CFS? … 10
• 1.2 What does ME/CFS look like in everyday life? … 12
• 1.3 Who is affected? … 14
• 1.4 How are ME/CFS and Long Covid connected? … 15
• 1.5 What causes the symptoms? … 16
• 1.6 How are patients cared for? … 20
• 1.7 What helps professionals when working with parents affected by ME/CFS? … 24

2 The Foundation: Understanding Your Own Energy Level​

• 2.1 What is pacing? … 27
• 2.2 Learning to recognize bodily signals … 29
• 2.3 What pacing strategies exist? … 34
• 2.4 Finding personal pacing routines in family life … 36

3 Supporting Your Child Step by Step​

• 3.1 How do children experience and process a parent’s illness? … 47
• 3.2 Control: Understanding the world around them … 49
  
  • Step 1: Establishing routines … 52
  • Step 2: Age‑appropriate explanations … 54
  • Step 3: Regular communication … 58
• 3.3 Attachment: Strengthening a loving relationship … 62
  
  • Step 1: Examining your own expectations … 62
  • Step 2: Strengthening the relationship … 64
• 3.4 Self‑efficacy: Experiencing personal success … 67
  
  • Step 1: Praise and appreciation … 67
  • Step 2: Making space for emotions … 69
  • Step 3: Avoiding over‑responsibility … 79

4 Taking Care of Yourself​

• 4.1 Finding acceptance … 80
• 4.2 Self‑compassion instead of self‑criticism … 82
• 4.3 Dealing with your own emotions … 83
• 4.4 Changing recurring thoughts … 84
• 4.5 Noticing the positive … 92
• 4.6 Pleasant activities … 96

5 Living Partnership​

• 5.1 Tips for the healthy parent … 102
  
  • Dealing with emotions … 102
  • Redistributing roles and helpful everyday strategies … 105
  • Using sources of strength … 106
• 5.2 Shaping the couple relationship … 107
  
  • Changes within the couple system … 109
  • Communication in the relationship … 110
  • Positive shared time … 115
  • Experiencing closeness … 116

6 Using Networks​

• 6.1 Support from family and friends … 117
• 6.2 Professional support services … 119

References … 123

Appendix​

• Activity Log … 135
• Evaluation of the Activity Log … 137
• Pacing Diary … 138
• Pictograms for Daily Planning … 140
• Emotion Emoji Collection … 141
• List of Pleasant Activities … 142
• Notes on Online Materials … 146