News from Germany

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From Bluesky:

Machine Translation

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Dr. Sabine Hermisson @sabinehermisson.bsky.social​

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I often receive requests like this.​

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“‘My friend has the most severe form of ME/CFS and is considering applying for assisted suicide.​

The entire family is overwhelmed and urgently needs support.​

May she contact you?’”​

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What is so devastating about this:​

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These are not people who have “exhausted all treatment options.”​

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They are severely ill people​

who have NO treatment​

and often no adequate medical support.​

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I receive requests like this because I am the mother of a daughter who is severely affected by ME/CFS—and because these families are being left to cope on their own.​

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[Poster that says:]​

This is​

not​

an individual problem.​

It is a failure​

of care.​

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@schumannkorinna.bsky.social [Federal Minister for Labour, Social Affairs, Health, Care and Consumer Protection]​

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[Chandelier]

[GER] Pharmacological treatment options for post-COVID syndrome and ME/CFS, 2026, Gogoll et al.

Medikamentöse Therapieoptionen bei Post-Covid und ME/CFS

Gogoll, Christian; Weber, Astrid; Specht, Ann Kristin

Web | DOI | PDF | MMW - Fortschritte der Medizin | Login required

Table 1 – Treatment options according to symptoms​

Symptoms	Non-pharmacological measures	Potential on-label therapies	Potential off-label therapies
Fatigue	Pacing, energy and activity management, antioxidant supplements (e.g. NADH, glutathione, N-acetylcysteine), and, where appropriate, ginseng-containing combination preparations	–	LDN, LDA, pyridostigmine, antihistamines
Cognitive impairment (brain fog)	Memory strategies, keeping a diary, occupational therapy (cognitive training), and digital applications (e.g. NeuroNation)	–	LDN, LDA, guanfacine, lisdexamfetamine, vortioxetine
Pain	Physical, psychological and activity-based measures; see also the relevant guidelines issued by the German Pain Society and the German Society of Neurology	Paracetamol, NSAIDs, pregabalin, gabapentin, duloxetine, medical cannabis	LDN, LDA
Sleep disorders	Sleep hygiene, relaxation techniques, and digital sleep programmes (e.g. DiGA); see also the AWMF S3 guideline on insomnia	Melatonin, diphenhydramine, low-dose antidepressants (e.g. doxepin, trimipramine, mirtazapine), daridorexant, medical cannabis	–
Sensory intolerance	Sunglasses, darkening of rooms, hearing protection, and avoidance of intense smells and, where appropriate, touch	–	LDA
Orthostatic intolerance/postural orthostatic tachycardia syndrome (PoTS)	Compression stockings, 2–3 litres of fluid per day, and increased salt or electrolyte intake	Low-dose beta-blocker (e.g. nebivolol), midodrine	Ivabradine, pyridostigmine, fludrocortisone, midodrine; in severe PoTS, intravenous fluid replacement may be considered
Allergic diathesis/mast cell activation syndrome (MCAS)	Low-histamine diet	H1 antihistamines, H2 blockers, montelukast, cromoglicic acid	Ketotifen, GLP-1 analogues
Depression	Including cognitive behavioural therapy (CBT), psychoeducation, psychotherapy, physical activity and sleep deprivation (CAVEAT: many of these interventions may not be feasible in the presence of post-exertional malaise [PEM]); see also the relevant guideline on depression	NaSSA: mirtazapine (caution in cases of fatigue); SNDRI: bupropion; SNRI: duloxetine; SSRI/SARI: paroxetine, sertraline; TCA: amitriptyline (caution in cases of tachycardia or muscle fatigue); licensed antidepressant: vortioxetine	–
Anxiety	Including CBT, exposure therapy and relaxation techniques; see also the S3 guideline on anxiety disorders	Short-term use may be considered, e.g. benzodiazepines (lorazepam)	–

LDN: low-dose naltrexone; LDA: low-dose aripiprazole; MCAS: mast cell activation syndrome; NaSSA: noradrenergic and specific serotonergic antidepressant; SNDRI: selective noradrenaline-dopamine reuptake inhibitor; SNRI: serotonin-noradrenaline reuptake inhibitor; SSRI: selective serotonin reuptake inhibitor; SARI: serotonin antagonist and reuptake inhibitor; TCA: tricyclic antidepressant

Table 2 – Overview of additional off-label substances by post-COVID syndrome (PCS) symptom and level of evidence​

Symptom	Substance	Level of evidence
Fatigue/PEM	Fluvoxamine	Phase III RCT (n = 399)
Fatigue/PEM	Amifampridine	Case series (double-blind design)
Fatigue/PEM	Rapamycin	Pilot RCT (ME/CFS)
PoTS/dysautonomia	Pyridostigmine (Mestinon)	Systematic reviews
PoTS/dysautonomia	IVIG/SCIg	Ongoing phase III RCTs
Brain fog	Antihistamines (H1 + H2)	Controlled pilot study; RCT ongoing
Brain fog	Ketotifen	Case reports
Brain fog	Perampanel	Mechanistic evidence (PET study)
Sleep disorders	Daridorexant	On-label; PCS-specific data are lacking
Sleep disorders	Mirtazapine	DREAMING RCT (insomnia in general)
Small-fiber neuropathy	IVIG	Case-control and cohort studies
Spike protein persistence	Maraviroc and pravastatin	Case series (n = 18)
Microclots/coagulation	Nattokinase	In vitro data

Levels of evidence are presented in simplified form.

IVIG: intravenous immunoglobulin; SCIg: subcutaneous immunoglobulin; RCT: randomized controlled trial

 

[Chandelier]

From Bluesky:

Machine Translation:

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2026 marks the tenth anniversary of the founding of the German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS e. V.) in April 2016. Exactly 10 years ago today, on September 27, 2016, we made our first public appearance as an association at the #MillionsMissing action in Hamburg. ​

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Over these 10 years, public awareness of #MECFS has changed significantly. In addition to increased media and medical attention, political awareness in particular has grown noticeably. This development is now also reflected in a substantial expansion of ​

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public funding for ME/CFS research.​

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Despite these positive developments, adequate medical care remains severely limited—and in some cases entirely unavailable—for many people with ME/CFS. A lengthy struggle to obtain a diagnosis and social-medical recognition of ME/CFS is still the norm, often accompanied by experiences of stigmatization, medical gaslighting, and inappropriate treatment. It is therefore clear that significant efforts will continue to be necessary in the future to move one step closer to a world in which recognition of and adequate care for ​

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people with #MECFS are taken for granted.​

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In our blog post commemorating the association’s tenth anniversary, we provide an overview of the central areas of our work and outline the most important milestones in the association’s history to date. ​

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We would like to take this opportunity to sincerely thank you for your continued support, without which our work would not be possible in this form!​

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Link to the blog:​

Zehnjähriges Jubiläum der Deutschen Gesellschaft für ME/CFS — Deutsche Gesellschaft für ME/CFS

Die Deutsche Gesellschaft für ME/CFS feiert im Jahr 2026 ihr zehnjähriges Bestehen.

www.mecfs.de

[Google Translate link. ]​

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#MECFS​

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[Chandelier]

From the Berlin Buyers Club website.

Berlin Buyers Club is a Berlin-based grassroots art-activist collective that was founded in March 2023.

We are a small group of affected people doing what we can under very constrained circumstances after SARS2 and other infections made us chronically ill—for some of us, dramatically altering the trajectory of our lives.

We spend our limited energy on seeking awareness, treatments, and justice for people affected by ME/CFS, Dysautonomia, MCAS, Long COVID and other complex neuro-immune diseases.

Machine translation:

Open Letter to the German Standing Committee on Vaccination (STIKO)​

Open letter to the German Standing Committee on Vaccination (STIKO), the Federal Joint Committee (G-BA), and Federal Minister of Health Linnemann: Make updated COVID-19 vaccines accessible now – a call for science-based vaccination recommendations and coverage of costs

Dear Sir or Madam,

Dear Federal Minister Linnemann,

We have learned with dismay about the new vaccination recommendation issued by the German Standing Committee on Vaccination (STIKO), according to which the annual COVID-19 booster vaccination will in future be recommended as a standard vaccination only for people aged 75 and over.

The Berlin Buyers Club represents the interests of people living with Long COVID and ME/CFS, as well as advocating for reliable healthcare structures and effective infection prevention. Many of the people we represent have been living for years with severe, and in some cases permanent, health consequences resulting from a SARS-CoV-2 infection.

In view of the persistently high number of people affected, we consider it short-sighted to the point of being negligent that the new vaccination recommendation focuses on protection against severe acute disease, while the prevention of the long-term consequences of COVID-19 infections—including Long COVID, ME/CFS, cardiovascular and cerebrovascular events, organ damage, and autoimmune diseases—plays little role in the public assessment of the vaccination strategy.

At the same time, updated vaccines targeting the currently circulating XFG variant are now available. The European Union authorized the XFG vaccines as early as 28 July 2026. On 3 September 2026, the Federal Joint Committee (G-BA) resolved to include Comirnaty XFG, Spikevax XFG, and Nuvaxovid XFG in the Vaccination Guideline. However, this resolution has not yet entered into force.

We cannot understand why people who now wish to protect themselves with a vaccine adapted to the currently circulating virus variant must continue to wait for access to that vaccine—or pay for it themselves—while existing stocks of older vaccines are still being used. An infection can have serious health consequences, particularly for people living with Long COVID or ME/CFS and for their relatives. The principle of economic efficiency must not be used as a pretext to withhold medically appropriate protection simply because older vaccine stocks are still available.

This is especially difficult to understand given that the Robert Koch Institute explicitly recommends, for influenza, “the most up-to-date antigen combination recommended by the WHO.” Why should a different standard apply to COVID-19?

To our knowledge, we have never before had a Federal Minister of Health and a public health administration insist on using up a vaccine targeting an outdated influenza variant first, even though a vaccine adapted to the currently circulating variant was already available. Why should this be acceptable in the case of COVID-19?

This is particularly concerning because current variant monitoring in Berlin shows strong circulation of XFG, while the SARS-CoV-2 viral load in wastewater is rising again.

We therefore demand:

1. Vaccination recommendations must be based on the current state of scientific knowledge and the actual burden of disease—not exclusively on the number of hospitalized COVID-19 patients and COVID-19 deaths. The COVID-19 vaccination recommendation must therefore once again be extended to younger age groups and must adequately take into account the long-term consequences of SARS-CoV-2 infections.
2. Updated vaccines must be made accessible immediately. Access to current vaccines must not depend on whether older vaccine stocks are still available, which vaccine can currently be obtained most economically, or whether people can afford to pay the costs themselves.
3. People living with Long COVID or ME/CFS, as well as their relatives and caregivers, must be given immediate access to COVID-19 vaccines adapted to the XFG variant—as a benefit covered by statutory health insurance.

Vaccination is one of the great achievements of modern medicine. It must not become a privilege reserved for those who can afford to pay privately for the most up-to-date and scientifically appropriate version of a vaccine.

We therefore call for a science-based vaccination policy that prioritizes protecting the population as a whole rather than using up existing vaccine stocks.

Yours faithfully,

Berlin Buyers Club

 

[Chandelier]

Bundesförderung läuft aus: Zukunft der Cochrane Deutschland Stiftung ist ungewiss

nachrichten.idw-online.de

Google Translate link.

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Federal Funding to End: Future of the Cochrane Germany Foundation Uncertain

Freiburg, September 28, 2026 (embargoed until 5:00 p.m. local time).

The Federal Ministry of Health (BMG) will end its funding of the Cochrane Germany Foundation (CDS) at the end of 2027. The Ministry recently informed the Foundation of this decision in writing. After ten years, the CDS must therefore reorganize its funding. Without new core funding, its important contributions to the evidence-based healthcare system established by law are at risk of being discontinued.

The Cochrane Germany Foundation was established in Freiburg im Breisgau in 2017 as a consumption foundation and currently receives an annual grant of just over one million euros from the BMG budget, approved by the German Bundestag. This funding has enabled the Foundation to continue and expand the successful work of the German Cochrane Centre, which was established at the University of Freiburg in 1998—independently of commercial interests.
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[Chandelier]

ME/CFS in Praxis und Forschung – Fortbildungsblock 2026 | Live-Webinar

Neues Live-Webinar für Ärzt*innen: „ME/CFS erkennen und versorgen – Wissen kompakt” am 04. November 2026

www.mecfs.de

CME on ME/CFS with Professor Scheibenbogen.
Machine translation:

Recognising and Managing ME/CFS – Key Information at a Glance​

Live webinar on 4 November 2026

In autumn 2026, the Charité Fatigue Centrum will host an online continuing medical education (CME) course for physicians on the topic of “Recognising and Managing ME/CFS – Key Information at a Glance.” The event will take place as a webinar on Wednesday, 4 November 2026, under the scientific direction of Professor Carmen Scheibenbogen, MD, Charité – Universitätsmedizin Berlin. Participation is free of charge.

The course provides a comprehensive overview of the diagnosis, treatment and care of people with ME/CFS. In addition to focusing on the practical recognition and management of ME/CFS and common comorbidities, it will address specific considerations for affected children and adolescents, current treatment developments, and the medico-social support of patients.

Following each presentation, participants will have the opportunity to ask questions during a Q&A session. The course has been accredited by the Hamburg Medical Association for 4 CME credits. In addition to the live event, an online post-course assessment will be available.

The German Society for ME/CFS is supporting the event in an organisational capacity.

Programme​

Dr Kirsten Wittke, MD
Charité Fatigue Centrum
Clinical Presentation, Diagnosis and TreatmentStandards in ME/CFS
20-minute presentation followed by 10 minutesof discussion

Dr Michael Stingl
Cereprax – Neurology and Psychology Practice
Common Comorbidities in ME/CFS
10-minute presentation followed by 10 minutes ofdiscussion

Professor Uta Behrends, MD
MRI Chronic Fatigue Center (MCFC) for YoungPeople, Technical University of Munich
ME/CFS in Children and Adolescents
10-minute presentation followed by 10 minutes ofdiscussion

Professor Carmen Scheibenbogen, MD
Charité Fatigue Centrum
Current Clinical Trials of ME/CFS Treatments
10-minute presentation followed by 10 minutes ofdiscussion

Dr Astrid Weber
Weber-Bartz-Papendieck Group Practice
Medico-Social Principles and MedicalAssessment in ME/CFS
15-minute presentation followed by 10 minutes ofdiscussion

Registration​

The course is intended for healthcare professionals.

When registering, please provide your Uniform Continuing Education Number (EFN) so that we can report your participation for the award of CME credits to the Medical Association’s Electronic Information Distributor (EIV). In this case, a separate certificate of attendance will not be required.

Participants from Austria and Switzerland, as well as those without an EFN, may request a certificate of attendance for submission to the relevant authority. Please indicate this accordingly when registering.

You can register using the following link:

Register for the CME course

Wednesday, 4 November 2026
Live webinar: 6:00 p.m. to 8:00 p.m.

 

[Chandelier]

Pflegeversicherung: Pflegereform passiert Bundeskabinett – höhere Hürden für Pflegegrade ab 2027

Der Pflegeversicherung fehlt Geld. Versicherte zahlen mehr, Leistungen sinken. Die Stiftung Warentest sagt, was künftig gilt.

www.test.de

Nursing care reform approved by the Federal Cabinet – higher hurdles for care levels from 2027​

Date: September 30, 2026 • Text: Barbara Bückmann

A reform is intended to reduce the expenditure of long-term care insurance funds. The bill has now been approved by the Cabinet. Anyone wishing to apply for a care level should do so before the end of 2026.

 

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