News from Germany

[Chandelier]

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?’”​

​

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.​

​

@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. ​

​

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 ​

​

public funding for ME/CFS research.​

​

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!​

​

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. ]​

​

#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.

 

[PageofME]

 

[Chandelier]

This post has been copied to its own thread: German Society for ME/CFS - Funding Opportunity - Deadline November 15, 2026

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Funding opportunity, Germany only.

This year, the German Society for ME/CFS isonce again offering grants for smallerexploratory studies and pilot studies through its#MECFS research programme. The maximum grant amount per project is €30,000 this year. The application deadline is 15 November 2026.

Further information, funding requirements, and the application form can be found here: www.mecfs.de/forschungsprogramm

We would like to thank all members and donors for their support, which makes this researchprogramme possible in the first place. #MECFS

Which projects can be funded?

The funding covers a broad range of possible projects. It is guided by the specific needs of people affected by the disease and by the aim of improving their situation. Priority will be given to pilot projects on drug development and research projects focused on the development and validation of biomarkers. However, studies on the diagnosis, epidemiology, care, and basic science of ME/CFS—including laboratory studies—are also welcome. The type of study is not an exclusion criterion. Co-financing of studies that are already underway is possible.

What evaluation criteria will be applied?

The following criteria will be taken into account when applications are assessed:

• Scientific quality and relevance
• Methodology and study design
• Degree of innovation and potential forimpact
• Feasibility and resources
• Qualifications of the research team
• Patient orientation and ethicalconsiderations
• Publication and Open Science

Further information on the evaluation criteria can be found here.

Who can apply for funding?

Anyone planning or already conducting an ME/CFS research project and affiliated with an institution in Germany—whether a university, institute, or other public or private organisation—is eligible to apply.

 

[Chandelier]

Blast from the past found by Mirja Nicolas on Bluesky:

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Mirja Nicolas @privilegienschreck.bsky.social

You all surely knew that what psychosomatic medicine nowadays calls “pension seeking” was originally used as (post-)war propaganda.

Spoiler: German Original Text

Angesichts der zu befürchtenden Verweichlichung der männlichen Willenskraft wurden die Berufsberater in den Städten und Kreisen an Rhein und Ruhr nun immer häufiger gewarnt, die Kriegsbeschädigten würden sich mutwillig den staatlichen Rehabilitierungsanstrengungen verweigern und es an der eingeforderten „Arbeitsfreudigkeit" vermissen lassen.

Wem es nach Ansicht der Verantwortlichen im Alltag nicht gelang, den eingeforderten Willen zur Arbeit aufzubringen, wurde in der Folge daher oftmals pauschal pathologisiert.

Denn ohne sinnvolle Beschäftigung, so die Befürchtung namhafter Experten der preußischen Provinzen, würden sich die Beschädigten in eine „Rentenhysterie“ oder „Rentenpsychose" flüchten, um „die Krankheit und Symptome zu erhalten und die aufgrund der Krankheit gewährte Rente nicht zu verlieren“.

Auch hier zeigt sich, dass sich die federführenden Mediziner im Zuge der auf breiter Front vorangetriebenen Mobilmachungsbestrebungen eines dichotomen Geschlechterdiskurses bedienten, der kategorisch zwischen dem propagierten Ideal des harten, willensstarken Mannes und dem Zerrbild der unberechenbaren und schwächlichen Natur der Frau unterschied, galt doch gerade die „Hysterie" in der psychiatrischen Diagnostik der Zeit als ein klassisches Frauenleiden."

So versah das als Standardwerk geltende „Lehrbuch für Psychiatrie“ das Krankheitsbild in seiner Verlaufsbeschreibung nicht zufällig mit eindeutig weiblich assoziierten „Symptomen“: „Bei der Flucht in die Krankheit erreicht man bestimmte Zwecke durch Krankheit. Durch den Wutanfall ein Nachgeben; durch die Ohnmacht einen neuen Hut; durch länger dauernde Krankheit eine Badekur.“

In view of the feared enfeeblement of male willpower, vocational counselors in the cities and rural districts along the Rhine and Ruhr were increasingly warned that war-disabled men would wilfully resist the state’s rehabilitation efforts and fail to display the requisite “willingness to work.”

Consequently, anyone whom those responsible believed unable, in everyday life, to summon the requisite will to work was often pathologized wholesale.

For, according to prominent experts in the Prussian provinces, without meaningful employment the disabled would supposedly retreat into “pension hysteria” or “pension psychosis” in order “to preserve the illness and its symptoms and not to lose the pension granted on account of the illness.”

This also reveals that, in the course of the broad-based efforts to mobilize society, the physicians who took the lead relied on a dichotomous gender discourse that categorically distinguished between the propagated ideal of the tough, strong-willed man and the distorted image of woman’s unpredictable and feeble nature. After all, “hysteria” in the psychiatric diagnostics of the period was regarded precisely as a quintessential female ailment.

Thus, the Textbook of Psychiatry, regarded as a standard work, did not happen to furnish the clinical picture, in its description of the illness’s progression, with “symptoms” bearing unambiguously feminine associations:

“In retreating into illness, one achieves certain ends through illness: a concession through a fit of rage; a new hat through fainting; a spa treatment through prolonged illness.”

Surely it is also purely coincidental that what I call the “feminization” of Long COVID and ME/CFS is described in a similar way here.

https://www.brauweiler-kreis.de/wp-content/uploads/GiW/GiW2014/GiW_2014_LOEFFELBEIN_HELDENTUM.pdf

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[Peter T]

“pension seeking”

Does this mean because I now have both my work and state pensions, that I will spontaneously recover? Two years on from retirement age and it hasn’t happened yet.

 

[Chandelier]

Start - Severe & Very Severe ME Research Registry

... Weiterlesen ...

severe-me-registry.de

Google Translate Link.

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The Severe and Very Severe ME Research Registry: Participation, Research & Networking​

Biomedical ME Research in the Home Setting​

Enabling people with severe and very severe ME to participate in research studies​

​

The Severe and Very Severe ME Research Registry has predefined eligibility criteria. Please check whether you meet these criteria before registering.​

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Spoiler: Short Version for People with Very Severe ME

Information Sheet on the
Severe & Very Severe ME Research Registry

Every level of severity deserves a place in research!​

The Severe & Very Severe ME Research Registry gives people with severe and very severe ME from Germany, Austria, and Switzerland the opportunity to participate in research through home visits.

Who can register? All of the following criteria must apply:

• People aged 14 or older with severe or very severe ME from Germany, Austria, or Switzerland
• Due to their illness, no longer able to leave their home to participate in a study
• An existing risk of severe or prolonged PEM/PENE as a result of travel, examinations, or other study-related exertion
• Unable to leave their home due to their illness because doing so would result in a substantial worsening of their condition
• Leaving their home only for unavoidable appointments and only with extraordinary medical measures, such as sedation, transport while lying down, etc.

Non-binding guidance: Bell score of 20 or below

Why is registration so important?

Various subgroups and the scientific significance of different levels of severity are currently being discussed in ME research. People with severe and very severe disease courses represent a patient group that has received very little research attention to date.

In order to understand the full spectrum of the disease, research must not be limited to mild and moderate cases. Every registration brings us one step closer to appropriate research!

Planned steps of the registry

Step 1:

• Recruitment of people with severe and very severe ME
• Target: 600+ registrations
• Current status: 300 registrations

Step 2:

• Promoting the registry among researchers
• Receiving research proposals
• Connecting people affected by ME with research projects

All information about the registry:
www.severe-me-registry.de

For enquiries:
severe.me.registry@pm.me

Instagram:
@severe_me_research_registry

Register now and help ensure that severe and very severe disease courses are finally included in research!

Registration link:
https://umfrage.severe-me-registry.de/858633?lang=de&newtest=Y

Initiated by: Arista Heß, herself severely affected

Scan & register!​

Data protection

Registration is carried out באמצעות a self-hosted LimeSurvey installation. All data is stored on servers operated by Hetzner Online GmbH in Germany and processed in accordance with German data protection law.

Registration is non-binding and does not constitute an automatic offer or guarantee of participation in a study. The registry is privately operated and non-commercial.

Registration Process

1. Check the requirements

Participation is only possible within the framework of home visits.

2. Complete the form

Personal details and information about the illness are provided.

3. Review of the information

The registry administrator reviews the submitted information.

4. Possible follow-up questions

If necessary, a gentle and considerate approach will be taken to make contact.

5. Inclusion in the registry

Following a successful review, the person will be included in the registry.

After Registration

1. Submission of a study proposal

A research team submits its proposal to the registry.

2. Study review

The research question, study procedures, and potential burden on participants are reviewed.

3. Information sent by email

People who are generally considered suitable will be informed by email.

4. Decision by the registrant

Any contact and participation are always voluntary.

From Twitter:

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Over 800 registrations. Phase II is beginning: raising targeted awareness of the registry within the research community, supporting study planning, and communicating information about studies. This will help people with severe and very severe ME gain access to research through home visits.​

​

It is a long road—but who has learned patience better than those of us most severely affected?​

​

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[Chandelier]

From Bluesky:

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ME/CFS Research Foundation @mecfsresearch.bsky.social​

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Wir suchen ehrenamtliche Verstärkung für unsere Redaktion: 3 bis 4 Std. pro Woche, remote und flexibel. Du recherchierst und schreibst gern und möchtest die #MECFS-Forschung voranbringen?​

Schreib uns an ehrenamt@mecfs-research.org​

​

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We’re looking for volunteer support for our editorial team: 3–4 hours per week, remotely and flexibly. Do you enjoy researching and writing and want to help advance #ME CFS research?

Contact us at ehrenamt@mecfs-research.org.

 

[Chandelier]

From Bluesky:

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Tove Harris @toveharris.bsky.social
Explanation of when Long COVID or ME/CFS actually constitutes a need for care within the meaning of long-term care insurance, and how the need for assistance should be documented so that it can be properly and legally defensibly taken into account in the six care-grade assessment modules.
#LongCOVID #MECFS #COVID

https://www.anwalt.de/rechtstipps/pflegegrad-bei-long-covid-und-me-cfs-fatigue-und-pem-richtig-bewerten-284902.html

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Erläuterung, wann bei Long COVID oder ME/CFS tatsächlich Pflegebedürftigkeit im Sinne der Pflegeversicherung vorliegt und wie der Hilfebedarf so dargestellt wird, dass er in den sechs Pflegegrad‑Modulen rechtssicher berücksichtigt werden kann.

 

[Chandelier]

Off-Label-Medikamente gegen die Erkrankung ME/CFS

Berlin: (hib/PK) Sogenannte Off-Label-Medikamente gegen die Erkrankung ME/CFS sind Thema einer Kleinen Anfrage (21/8261(Dokument, öffnet ein neues Fenster)) der Linksfraktion. In Deutschland...

www.bundestag.de

Google Translate link.

The official off-label medication list contains 4 medicines of which only one is intended for pwME that got sick before Covid.

6 October 2026
Health — Minor Interpellation — hib 775/2026
Off-label medicines for ME/CFS

Berlin: (hib/PK) So-called off-label medicines for ME/CFS are the subject of a minor interpellation (21/8261 [document, opens in a new window]) submitted by the Left Party parliamentary group. An estimated 650,000 people in Germany have ME/CFS. According to the interpellation, most patients developed the illness following a Covid-19 infection.

There is currently no medicine or therapy specifically for treating ME/CFS. To address the symptoms, doctors and patients therefore turn to medicines used off-label. In April 2026, four medicines were approved by the Federal Joint Committee (G-BA) for the treatment of Long Covid/Post-Covid through off-label use.

However, the G-BA distinguishes between Long Covid/Post-Covid and ME/CFS without providing a comprehensible justification, the parliamentary group says. As a result, patients who developed ME/CFS before the Covid-19 pandemic following infection with other pathogens are largely excluded from treatment, since only one of the four medicines is also intended for ME/CFS.

Among other things, the parliamentary group wants to know from the Federal Government to what extent the experience of patient organisations such as the Federal Association ME/CFS Fatigatio was taken into account in the G-BA’s decision.

 

[Jonathan Edwards]

In April 2026, four medicines were approved by the Federal Joint Committee (G-BA) for the treatment of Long Covid/Post-Covid through off-label use.

This seems strange to me. I am not aware of medicines in the UK being 'approved' yet 'off-label'. If a government health system approves a drug for a disease I would think it has a 'label' for that disease, at least in the sense that it is agreed that the disease falls under a wider label indication.

The whole thing looks very confused. I am not sure that governments are obliged to take into account patient organisation views. They should look at the evidence.

 

[Chandelier]

This seems strange to me. I am not aware of medicines in the UK being 'approved' yet 'off-label'.

This is a thing, both in Austria:

https://www.meduniwien.ac.at/web/fileadmin/content/auftritte/referenzzentrum_postvirale_syndrome/pdf-Dateien/PAIS_MECFS_Medikas_IND_off-label_Version_21.02.2025.pdf

and Germany:

Expertengruppe Long COVID Off-Label-Use

Off-Label-Anwendungen Use Arzneimittel Zulassung Expertengruppen

www.bfarm.de

Google Translate link.

Interdisciplinary, collaborative D-A-CH consensus statement concerning the diagnostic and treatment of ME/CFS, 2024, Hoffmann et al [German]

Therapie von ME/CFS — Deutsche Gesellschaft für ME/CFS

Pacing Off-Label-Therapie klinische Forschung begleitende Psychotherapie schädliche Therapien Spontanremission versus Therapieerfolg Therapie von ME/CFS Bislang fehlen speziell für ME/CFS zugelassene und kurative (heilende) Medikamente, sodass die Behandlung von ME/CFS aktuell darauf beruht...

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Post in thread 'News from Germany'

Sep 25, 2026

[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

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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...

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[justlxsa]

They looked at evidence only (it didn’t have to be hard evidence) and as far as I know didn’t take patient organization’s views into consideration- but even that was a bit confused. Agomelatin was approved, Low dose abilify and LDN were not.

One could argue that the study for LDA has better evidence for ME/CFS or LongCovid than Agomelatin.

 

[paywalw]

In April 2026, four medicines were approved by the Federal Joint Committee (G-BA) for the treatment of Long Covid/Post-Covid through off-label use.

This seems strange to me. I am not aware of medicines in the UK being 'approved' yet 'off-label'. If a government health system approves a drug for a disease I would think it has a 'label' for that disease, at least in the sense that it is agreed that the disease falls under a wider label indication.

The whole thing looks very confused. I am not sure that governments are obliged to take into account patient organisation views. They should look at the evidence.

In the UK formal "approval" for use of drugs for off-label indications would be via the commissioners. So either the ICBs or NHS England (for drugs used in specialised services). An example of the later would be the clinical commissioning policy for anakinra for HLH.

 

[Jonathan Edwards]

They looked at evidence only (it didn’t have to be hard evidence) and as far as I know didn’t take patient organization’s views into consideration- but even that was a bit confused. Agomelatin was approved, Low dose abilify and LDN were not.

So this is a bit like the 2007 NICE committee approving GET and CBT, except that therapies do not have a Medicines Control Agency licensing procedure to make them 'off-label'.