News from Germany

National Clinical Trial Group (NKSG) Post-COVID Syndrome and ME/CFS - Phase 2 (Scheibenbogen's group) - this is independent of the national decade.

Funding amount: EUR 8m

In its first funding phase since 2022, the National Cancer Study Group (NKSG) was established as a platform for clinical trials and translational research with the aim of developing therapies for PCS and ME/CFS.

Three randomized controlled trials (RCTs) and two phase II trials were initiated to address key pathomechanisms in defined patient subgroups. These studies investigated the removal of autoantibodies through

- immunoadsorption,
- the efficacy of blood flow-enhancing drugs,
- and hyperbaric oxygen therapy

The results to date from the National Cancer Study Group (NKSG) indicate that autoantibodies and inflammation are central pathogenetic factors in PCS and ME/CFS.

Therefore, the second phase will focus on drugs that enable sustained improvement through the temporary depletion of autoantibody-producing cells, as well as on an immunomodulatory and neuromodulatory approach with high therapeutic potential.

These drug trials will again be accompanied by a comprehensive biomarker analysis to identify and validate predictive markers for treatment response and concomitant diagnostics.

www.gesundheitsforschung-bmftr.de

Nationale klinische Studiengruppe (NKSG) Post-COVID-Syndrom und ME/CFS - Phase 2 - DLR Gesundheitsforschung

www.gesundheitsforschung-bmftr.de www.gesundheitsforschung-bmftr.de

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The German obsession with autoantibodies (and inflammation) continues. But perhaps the money will also go towards the Isatuximab trial.
 
Development of AI-assisted diagnostic software for the evaluation of clinical typologies of ME/CFS patients (DETECT-ME/CFS)

The DETECT-ME/CFS project aims to enable rapid and reliable diagnosis of ME/CFS in specialized facilities with limited resources and a high workload.

This project develops an innovative Clinical Decision Support System ( CDSS ) that enhances clinical expertise and decision - making processes using artificial intelligence. Diagnostic accuracy and efficiency will be improved in two ways: First , by analyzing anonymized patient data, artificial intelligence will be used to identify patterns and novel diagnostic features, enabling the reliable exclusion of differential diagnoses. Second, based on automated literature searches for ME/CFS and the differential diagnoses identified, a system will be created to improve overall diagnostic capabilities using machine learning. The CDSS will be tested in real-world clinical practice and incorporates automated learning mechanisms for continuous improvement.
 
www.aerzteblatt.de

Kritik an zu hohen Prävalenzangaben zu Long COVID in vielen Studien – Deutsches Ärzteblatt

www.aerzteblatt.de www.aerzteblatt.de

AI Summary:
An expert group from the Robert Koch Institute (RKI) criticizes that many studies report excessively high prevalence rates for Long COVID. In an overview article published in the Journal of Health Monitoring (2026; DOI: 10.25646/13576), the group states that prevalence estimates vary considerably between studies and are not directly comparable due to substantial methodological heterogeneity.

Differences between studies include variations in data sources, study populations, definitions of Long COVID, follow-up duration, and consideration of potential influencing factors. In addition, most studies lack a control group and focus on nonspecific symptoms that are common in the general population, including in people with other or pre-existing conditions. Therefore, reported symptoms cannot be clearly attributed to a prior SARS-CoV-2 infection.

As a result, previous systematic reviews and meta-analyses have reported very high prevalence rates. For example, one meta-analysis of prospective studies estimated that more than 50% of individuals experienced at least one persistent or new symptom 3 to 6 months after confirmed COVID-19 diagnosis.

According to the RKI team, more reliable estimates come from controlled studies comparing individuals with and without prior SARS-CoV-2 infection. A meta-analysis of controlled studies up to mid-February 2023 estimated a pooled prevalence of at least one reported Long-COVID-associated symptom at least 3 months after confirmed infection at 40.9%. In the control group without evidence of infection, the prevalence was 25.4%, resulting in a prevalence difference of 15.5%. Thus, only 15.5% of reported symptoms in the infected group could be attributed to a prior SARS-CoV-2 infection.

Overall, based on meta-analyses of controlled studies, Long COVID symptoms in adults are estimated to occur in about 10–15% of cases at least 12 weeks after infection. When considering all infected individuals in the population, including asymptomatic or unrecognized infections, the prevalence is likely even lower. The frequency of Long COVID symptoms associated with functional impairments in daily life is estimated to be between 1.2% and 4.8%.

The term “Long COVID” is used inconsistently internationally. The RKI uses it to describe the period beyond the acute phase of SARS-CoV-2 illness and the full spectrum of possible long-term health consequences, focusing mainly on symptoms occurring at least 3 months after infection, often referred to as “Post COVID.”

Common nonspecific symptoms after SARS-CoV-2 infection include severe fatigue and cognitive impairments such as concentration and memory problems, as well as persistent respiratory complaints like shortness of breath and ongoing cough. In some individuals, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can be identified as a particularly severe subtype associated with substantial limitations in quality of life, physical and mental functioning, and social participation.

The RKI group also notes that long-term health consequences, including ME/CFS, can occur after other viral infections such as influenza, where they are referred to as “post-acute infection syndromes.”
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Long COVID bei Erwachsenen – eine aktuelle Bestandsaufnahme zu gesundheitlichen Langzeitfolgen nach SARS-CoV-2-Infektion in Deutschland

Nübel, Julia Beyer, Ann-Kristin Kümpel, Lisa Eckert, Grit Yessimova, Dinara Heldt, Katharina Mikolajewska, Agata Sarganas, Giselle

Abstract
Hintergrund: SARS-CoV-2-assoziierte gesundheitliche Langzeitfolgen stellen Public Health und Gesundheitsforschung weltweit vor große Herausforderungen.

Methode: Basierend auf einer fortlaufenden Literaturrecherche wurde ein narratives Review (Stand Juni 2025) zu Epidemiologie und Public-Health-Auswirkungen von Long COVID bei Erwachsenen erarbeitet.

Ergebnisse: Anhand von bevölkerungsbezogenen, kontrollierten Studien treten Long-COVID-Symptome mit einer Häufigkeit von etwa 10 – 15 % bei SARS-CoV-2- infizierten Erwachsenen auf.
Neben dem COVID-19-Impfstatus und der Virusvariante wird das Risiko für Long-COVID-Symptome vor allem durch gesundheitliche Vorbelastungen und soziodemografische Faktoren beeinflusst.
Bei den meisten Betroffenen bilden sich die Long-COVID-Symptome innerhalb eines Jahres zurück.
Insbesondere multiple und länger anhaltende Beschwerden können mit erheblichen Einschränkungen von Lebensqualität, Funktionsfähigkeit und Teilhabe sowie einem erhöhten medizinischen Versorgungbedarf einhergehen.
Darüber hinaus mehren sich Hinweise auf einen infektions-assoziierten Anstieg an neu diagnostizierten Symptomkomplexen, Organschäden und chronischen Erkran-kungen, was zur fortwährenden Public-Health-Relevanz von Long COVID beiträgt.

Schlussfolgerungen: Long COVID stellt nicht nur für Betroffene und ihre Angehörigen eine große Belastung dar, sondern geht auch mit nicht einschätzbaren längerfristigen Folgen für die Bevölkerungsgesundheit und das Versorgungssystem einher.

Web | DOI | Robert Koch-Institut
 
diskriminierung-umfrage.de

Die Umfrage zu Diskriminierung in Deutschland. Mach mit.

Drei gute Gründe, bei der großen Umfrage zu Diskriminierung mitzumachen: 1. Deine Stimme hilft, Diskriminierung sichtbar zu machen.
diskriminierung-umfrage.de diskriminierung-umfrage.de
Direct link to the English survey:

Found via this reddit post:
There is a government survey on discrimination in Germany where you can submit any examples of discrimination you have experienced, for example due to disability or chronic illness. ME/CFS is even listed as an example illness.

Perhaps this will give pwME and the way we are treated a little more visibility if a few of us fill it out. With this hope I have submitted my own experience.

For anyone else who wants to submit something, the survey is available in many different languages, but is only available until today.
Click to expand...
 
bnn.de

Long Covid wirft Frau aus Achern komplett aus dem Leben

Beate F. aus Achern war sportlich und aktiv, jetzt bewältigt sie den Alltag kaum. Long Covid hat ihr Leben verändert: körperlich, sozial und emotional.
bnn.de bnn.de

Article about a woman who got ME/CFS soon after retiring.
There’s a short section about her bad experience with a rehab clinic:

She went to a rehabilitation clinic. “There, in turn, they advised me to get more exercise. I went for walks and did some swimming – and it got worse every day. On top of that, I caught COVID again.”​
 

Journalist and pwME Margarete Stokowski wrote a new piece for her Long-Covid column for Apotheken Umschau.

Long-Covid-Kolumne: Das zieht sich aber bei dir​
​
When I bump into acquaintances I rarely see, they often say, “Wow, this is really dragging on for you.”​
And every time I explain that yes, that’s what happens when something is both chronic and incurable.​
It drags on.​
​
In the beginning, I thought it would clear up quickly too.​
Everything started with my Covid‑19 infection in January 2022. The first doctor told me, “Four to six weeks is normal.”​
Her advice was to drink plenty of water and take ibuprofen.​
…​
I’m not a naturally patient person, but you learn to adapt.​
There’s even an English term for it: crip time—a concept that, translated literally into German, unfortunately becomes Krüppelzeit.​
It describes how time works differently for disabled people.​
Tasks that others breeze through can take ages.​
And the reverse happens too: when someone tells me they couldn’t work out for two weeks because of an infection, it feels almost absurdly short.​
My sympathies, truly—but I haven’t been able to exercise for four years and five weeks because of mine.​
Maybe one day I’ll get back to it. Maybe.​
 

RiffReporter

www.riffreporter.de www.riffreporter.de
(Paywall)

New studies using “BC 007” are expected to launch later this year.​
​
After the start-up Berlin Cures failed with its approval trial in 2024, its successor company is now making a new attempt. RiffReporter has exclusive reporting on how the team plans to proceed, what the status is of the long‑anticipated ME/CFS research in Erlangen, and how the patients from the first compassionate‑use treatments with BC 007 are doing.​
 
Chandelier said:

RiffReporter

www.riffreporter.de www.riffreporter.de
(Paywall)

New studies using “BC 007” are expected to launch later this year.​
​
After the start-up Berlin Cures failed with its approval trial in 2024, its successor company is now making a new attempt. RiffReporter has exclusive reporting on how the team plans to proceed, what the status is of the long‑anticipated ME/CFS research in Erlangen, and how the patients from the first compassionate‑use treatments with BC 007 are doing.​
Click to expand...
No way in hell I'm getting my hopes up for this again after last time.
 
Chandelier said:

Journalist and pwME Margarete Stokowski wrote a new piece for her Long-Covid column for Apotheken Umschau.

Long-Covid-Kolumne: Das zieht sich aber bei dir​
​
When I bump into acquaintances I rarely see, they often say, “Wow, this is really dragging on for you.”​
And every time I explain that yes, that’s what happens when something is both chronic and incurable.​
It drags on.​
​
In the beginning, I thought it would clear up quickly too.​
Everything started with my Covid‑19 infection in January 2022. The first doctor told me, “Four to six weeks is normal.”​
Her advice was to drink plenty of water and take ibuprofen.​
…​
I’m not a naturally patient person, but you learn to adapt.​
There’s even an English term for it: crip time—a concept that, translated literally into German, unfortunately becomes Krüppelzeit.​
It describes how time works differently for disabled people.​
Tasks that others breeze through can take ages.​
And the reverse happens too: when someone tells me they couldn’t work out for two weeks because of an infection, it feels almost absurdly short.​
My sympathies, truly—but I haven’t been able to exercise for four years and five weeks because of mine.​
Maybe one day I’ll get back to it. Maybe.​
Click to expand...
There is more wisdom and expertise on this illness in just this excerpted text than every single thing written or said by our biopsychosocial overlords combined, the sum total of all their wasted effort. And it's not even close. Like comparing the size of the Moon to a small piece of yarn.

It's absolutely criminal how those suffering from it know so much more than the people who make all the decisions about us, in secret, behind closed doors. What a cruel thing this ideology is.
 
www.spiegel.de

Endometriose: Zahl der Frauen mit Diagnose stark gestiegen

Laut Barmer-Arztreport hat sich die Zahl der Frauen mit der Diagnose Endometriose binnen 20 Jahren mehr als verdoppelt. Die Daten zeigen, wie stark Begleiterkrankungen ins Gewicht fallen – und was für große regionale Unterschiede es gibt.
www.spiegel.de www.spiegel.de

While not strictly related to ME/CFS, it's relevant because it's a condition that was long unknown or considered psychosomatic and is finally being diagnosed more routinely by doctors.


Sharp Rise in Endometriosis Diagnoses — A Positive Development for Patients​
​
According to the Barmer-Arztreport, the number of women diagnosed with endometriosis has more than doubled over the past 20 years. The data also highlight the significant burden of comorbidities — and reveal marked regional disparities.​

AI Summary:
According to the Barmer-Arztreport, the number of women diagnosed with endometriosis has more than doubled over the past 20 years. Between 2005 and 2024, cases increased from around 230,000 to more than 510,000. The report is based on data from approximately eight million insured individuals and was published in Berlin.

Experts view this rise as positive news because it is mainly due to endometriosis being detected more often and at an earlier stage. Between 2015 and 2024, the average age at first diagnosis decreased by almost four years. In the past, the disease often went undetected, but it has become more widely recognized in society. However, it is still frequently mistaken for normal menstrual pain.

An early diagnosis can also have positive effects on fertility, as earlier detection allows treatment to begin sooner.

Endometriosis is a chronic disease in which tissue similar to the uterine lining grows outside, and sometimes inside, the uterus. The exact causes are still unclear. It is suspected that this tissue responds to menstrual cycle hormones, building up and breaking down outside the uterus and causing bleeding. Possible consequences include bleeding outside the uterus, inflammation, scarring, chronic pain, and reduced fertility.

First-line treatment is hormone therapy, for example with progestins. Studies suggest that long-cycle hormone therapy (without a break for menstrual bleeding) may positively affect later fertility, probably because it delays the spread of the disease.

A revised guideline introduced last year recommends less invasive diagnostic procedures. Instead of laparoscopy with tissue sampling, noninvasive imaging methods such as ultrasound should be preferred.

Between 2005 and 2024, hospitalizations due to endometriosis increased by around 80 percent. Experts hope this number will decline following the new guideline, as laparoscopy will be indicated less often. However, noninvasive diagnostic methods must first become established in everyday practice.

According to the report, women diagnosed with endometriosis also have significantly more comorbidities than expected for their age. Abdominal and pelvic pain were documented more than twice as often. Migraine and musculoskeletal disorders were also diagnosed more frequently. In addition, affected women more often suffered from depressive episodes and anxiety disorders.

There are also major regional differences in diagnosis rates. In Thuringia, first diagnoses are about 20 percent below the national average, while in Saarland they are about 20 percent above average. Endometriosis is also diagnosed more often in densely populated regions than in sparsely populated ones.
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