News from Germany

From Instagram.

Die Linke has agreed to unite in pressing the government to improve support and care for people with ME/CFS and Long COVID.

Machine translation:
MOTION ADOPTED! ✊

Around 1.4 million people in Germany are living with ME/CFS or Long COVID—yet for years, those affected and their families have faced systematic neglect, bureaucratic hurdles, and a lack of medical care instead of support. This has to stop!

Die Linke has decided: We will put serious pressure on the federal and state governments to take measures that make an immediate difference!

What we are demanding and will make happen:

Recognition of ME/CFS in the Medical Care Ordinance so that disability ratings (GdB) can be assessed fairly.

Fair consideration in care assessments and assessments of reduced earning capacity.

An end to endless rejections, assessment marathons, and bureaucratic harassment!

Real access to medical care—including for those who are severely ill and bedridden.

A concrete bill from the parliamentary group in the Bundestag to finally force the federal government to act!

As an opposition party, we cannot pass laws on our own—but we will keep turning up the pressure on the government until no one is ignored anymore. The wheels of politics turn slowly, but people affected by these conditions have no more time to wait!

A huge thank-you to everyone affected, all the initiatives, and everyone who got involved and supported this motion and fought alongside us! ❤️✊

Never alone, always together.

#mecfs #postcovid #longcovid #curemecfs

ANTRAG ANGENOMMEN! ✊

Rund 1,4 Millionen Menschen in Deutschland leben mit ME/CFS oder Long COVID – doch statt Unterstützung erleben Betroffene und ihre Angehörigen seit Jahren systematische Ignoranz, bürokratische Hürden und fehlende medizinische Versorgung. Damit muss endlich Schluss sein!

Die Linke hat beschlossen: Wir machen auf Bundes- und Landesebene ordentlich Druck für sofort wirksame Maßnahmen!

Was wir konkret fordern & umsetzen:

Verankerung von ME/CFS in der Versorgungsmedizin-Verordnung für die faire Feststellung des GdB (Grad der Behinderung).

Faire Berücksichtigung bei Pflegebegutachtung und Erwerbsminderung.

Schluss mit endlosen Ablehnungen, Gutachten-Marathons und bürokratischen Schikanen!

Echten Zugang zu medizinischer Versorgung – auch für schwer und bettlägerig Erkrankte.

Einen konkreten Gesetzentwurf der Bundestagsfraktion, um die Bundesregierung endlich zum Handeln zu zwingen!

Als Oppositionspartei können wir Gesetze nicht alleine beschließen – aber wir werden den Druck auf die Regierung so lange hochschrauben, bis niemand mehr ignoriert wird. Die Mühlen der Politik mahlen langsam, aber Betroffene haben keine Zeit mehr!

Ein riesiges Dankeschön an alle Betroffenen, Initiativen und Engagierten, die diesen Antrag unterstützt und mitgekämpft haben! ❤️✊

Niemals alleine, immer gemeinsam.

#mecfs #postcovid #longcovid #curemecfs
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Chandelier said:
www.mittelhessen.de

Universitätsklinikum Marburg widmet sich Post-Covid-Syndrom

Das Uniklinikum Marburg startet unter der Leitung von Professor Bernhard Schieffer eine Aufklärungsoffensive zum Post-Covid-Syndrom.
www.mittelhessen.de www.mittelhessen.de
Paywall.

Machine translation:

​
Under the motto “Understand. Support. Together.”, the University Hospital Giessen and Marburg (UKGM) in Marburg has launched a series of online events exploring the challenges of post-COVID syndrome.​
The first webinar featured Professor Bernhard Schieffer, Director of the Department of Cardiology, Angiology and Medical Intensive Care.​
His goal was to provide patients, family members and interested members of the public with information and practical advice on dealing with the condition.​
​
The series comprises three sessions.​
On August 19, Schieffer explored the limits of current scientific knowledge in a webinar entitled “What Happens in Post-COVID: Questions and No Answers?”​
Nearly 270 people tuned in at the peak of the live broadcast.​
Two further sessions, scheduled for Wednesday, September 9, and Wednesday, September 30, will delve deeper into post-infectious illnesses and emerging treatment approaches.​
​
…​
​
While scientists are still struggling to understand what causes post-COVID, patients are searching for ways to ease their symptoms.​
Schieffer takes a pragmatic approach to treatment, focusing on the early detection of metabolic disorders, cautious use of medication and targeted dietary changes.​
​
According to Schieffer, low-dose metformin could help stabilize glucose metabolism and potentially even promote the elimination of the virus.​
In many cases, he said, patients also experienced an improvement in their symptoms.​
Certain statins, when used at low doses, can support lipid metabolism and have anti-inflammatory effects.​
​
A low-carbohydrate, gluten-free diet has also proved helpful for many patients.​
Short-chain fatty acids and proteins, he said, can serve as important sources of energy while taking into account the reduced physical activity of patients.​
Schieffer recommends a Paleo diet.​
​
“They need their protein, but they don’t need carbohydrates.​
And if they do eat carbohydrates, they should choose those that they tolerate well.​
Hard cheese, for example, would be one option.​
Camembert, on the other hand, is not—it just goes straight to the hips.”​
The remark prompted a wave of laughing emojis from viewers.​
​
…​
​
General practitioners, Schieffer said, need to work closely with specialist clinics.​
So far, however, there has been limited interest in doing so.​
Relatively few physicians have recently participated in webinars aimed specifically at healthcare professionals.​
​
“That was also very frustrating for us,” Schieffer said.​
​
Where research is still urgently needed and scientific knowledge remains incomplete, uncertainty is inevitably high.​
Nevertheless, Schieffer struck a confident note during the webinar.​
​
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www.mittelhessen.de

Post-Covid: Marburger Professor zu Problemen und Perspektiven für die Erkrankten

Post-Covid und ME/CFS sind für Betroffene ein Schicksalsschlag. Laut Professor Bernhard Schieffer ist die Versorgung der Patienten lückenhaft. Warum er ein Modellprojekt fordert.
www.mittelhessen.de www.mittelhessen.de
Interesting bit:
An international post-Covid and ME/CFS symposium is also planned at UKGM Marburg on November 11. Topics will include basic research, autoantibodies, Long Non-Coding RNA and DNA modifications.
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Machine translation:
“We need a pilot project,” Schieffer argues, “that builds on the Miracle study and also includes inpatient care, while systematically collecting data. Without standardized data collection, every treatment remains an isolated case.”

Professor calls for standardized data collection

Research is better organized when compared directly. Every three to four months, the post-Covid centers across Germany meet—with questionnaires, AI analyses and standardized evaluations. This would also allow them to share information with one another about dead ends and misguided approaches, Schieffer says. There is also lively exchange at symposia, such as the one recently held in Amsterdam and the one soon to take place in Marburg.

On that occasion, the professor noted that an international post-Covid and ME/CFS symposium is also planned at UKGM Marburg on November 11. Topics will include basic research, autoantibodies, Long Non-Coding RNA and DNA modifications.

Expert sees a lack of continuing medical education

One question Schieffer specifically addressed was: “How can medical personnel be provided with continuing education across the board?” Schieffer says this question has been on his mind for years. Since 2020, Marburg has held breakfast lectures on the differential diagnosis of post-infectious diseases. ME/CFS and post-Covid are firmly included in the curriculum, but the effect is limited: “It will take years for this to become established,”

Schieffer says. Post-Covid research is searching for reliable biomarkers—measurable biological features with prognostic or diagnostic value. Patients are too heterogeneous, the results have not yet been validated, and large studies are lacking, so diagnosis remains a puzzle, Schieffer concludes.
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ME/CFS rips Germans into complete exhaustion
ME/CFS is a severe post-infectious disease that is still almost unexplored. Complete exhaustion and overload of stimuli tear sufferers from the former life. The smallest activities an enormous amount of power. There is no cure so far. But additional funds for research give hope.
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www.n-tv.de

ME/CFS reißt Tausende Deutsche in völlige Erschöpfung

ME/CFS ist eine schwere postinfektiöse Erkrankung, die noch nahezu unerforscht ist. Völlige Erschöpfung und Reizüberflutung reißen Betroffene aus dem früheren Leben. Die kleinsten Aktivitäten kosten enorm viel Kraft. Ein Heilmittel gibt es bislang nicht. Doch zusätzliche Gelder für die Forschung...
www.n-tv.de www.n-tv.de
 
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Long-Covid patients suffer: New number to be affected makes you pay attention
www.schwaebische.de

Long-Covid-Patienten leiden: Neue Zahl zu Betroffenen lässt aufhorchen

Off-Label-Medikamente sollen Long-Covid-Patienten endlich besser versorgen. Vier Mittel sind seit April 2026 empfohlen – doch die Kritik von Betroffenen an der Politik reißt nicht ab.
www.schwaebische.de www.schwaebische.de
Off-label drugs are supposed to provide better care for long-Covid patients at last. Four funds have been recommended since April 2026 – but the criticism of those affected by the policy does not stop there.
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Specific mandate of the expert group, which is looking Research, science, medicine and sufferers put together: to draw up a list of medicines that can also be prescribed and reimbursed outside of the approval (off-label use). The group should also deal with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as a possible severe progression of long-Covid. According to a response from the Federal Government to a recent small question from the Left Group in the German Bundestag, the expert group has also incorporated approaches to the prevention of long-Covid and ME/CFS into its work. “In Germany, an estimated 650,000 people are currently suffering from ME/CFS. A large proportion of patients contracted disease as a result of a Covid-19 infection," the left said.
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Why it's so difficult for ME/CFS patients to get help
www.mdr.de

"Wir sind nicht zuständig": Der frustrierende Alltag von ME/CFS-Patienten

ME/CFS zählt zu den schwersten chronischen Erkrankungen und kann den Alltag der Betroffenen massiv einschränken. MDR AKTUELL-Hörer Paul Kaschner ist nach einer Covid-Infektion selbst daran erkrankt. Er fragt sich: Warum ist es so schwierig, medizinische Ansprechpartner zu finden? Woran wird...
www.mdr.de www.mdr.de
ME/CFS is one of the most serious chronic diseases and can massively restrict the everyday life of those affected. MDR AKTUELL listener Paul Kaschner has contracted it himself after a Covid infection. He wonders: Why is it so difficult to find medical contact persons? What is currently being researched? And why is there a big gap between scientific developments and the care of those affected? ‌
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Long Covid and ME/CFS "Supply situation catastrophic"
Patient organizations are lamenting a catastrophic state of care, and scientists agree: Three and a half years after the end of the COVID-19 pandemic, there has been little improvement for the many people with Long Covid and ME/CFS. Their illness is hardly known, there is no approved medication, and it's not even known exactly how many affected are.
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"Chronically ill and forgotten: The debate on ME/CFS | TRU Doku x 37 Grad"​

I haven't had the chance to watch it yet, but found this panel interview with Dr. Scheibenbogen, Dr. Suttorp, Johanna Müller, whose sister has very severe ME/CFS (featured in this documentary a few months ago ), and friends of Kathi (who recently passed on) - her sad story is covered in part in the documentary here.

German-language only.
 
md-bund.de

Report Pflegebedürftigkeit

Der Report Pflegebedürftigkeit des Medizinischen Dienstes Bund berichtet über die Entwicklung und Potenziale der Pflegebegutachtung der Medizinischen Dienste.
md-bund.de md-bund.de

From page 15 of the 2026 Long-Term Care Needs Report: Trends and Potential for Improving Care Needs Assessments:

Development_Care.webp
Machine translation of page 15:
Earlier access to care benefits through the 2017 Care Reform – more people in need of care in younger age groups

Since the introduction of the definition of need for care in January 2017, a significant increase in the need for care has been evident in the younger age groups of those aged 18 to 59. This can be attributed to the fact that the definition of need for care valid until the end of 2016 primarily took physical impairments into account. Prior to the 2017 Care Reform, cognitive, mental, and psychiatric impairments were only considered to a very limited extent when determining the need for care.

Consequently, individuals with exclusively cognitive or mental/psychiatric illnesses were relatively rarely granted access to benefits from the social long-term care insurance under the system of three care levels. The Care Reform changed this fundamentally. Since then, physical, cognitive, and mental or psychiatric impairments, such as the effects of depressive disorders, have been considered equally and comprehensively.

The following figure shows the development in the number of new persons in need of care from 2015 to 2025 by age group. In the course of the 2017 Care Reform, there was a significant (total) increase in new persons in need of care by more than 50 percent per year. This increase was particularly pronounced in the younger age groups (18–59 years and 60–69 years). In recent years, the number of new persons in need of care in these groups has increased by more than 150 percent.

A different pattern is evident among the very elderly: among those over 90, the proportion of new persons in need of care has steadily declined since 2017—now to below 100 percent of the baseline value. This is partly due to the fact that many people in this age group were already in need of care before the reform and are therefore no longer recorded as new persons in need of care. Since 2023, a similar trend has also been emerging among those aged 80 to 89.
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What ME/CFS does with (to?) a bodybuilder from Alsdorf
www1.wdr.de

Von der Wettbewerbsbühne zu kompletter Fatigue: Was ME/CFS mit einer Bodybuilderin macht

Die Krankheit laugt Betroffene aus. Claudia Cüpper macht das gerade durch, dabei strotzte sie vor einem Jahr noch vor Kraft.
www1.wdr.de www1.wdr.de
In 2025, she is still on stage: Claudia Cüpper is a bodybuilder, 38, has been training for this competition for more than half a year, five, six, seven times a week. She is on stage for the first time in her glitter bikini, supported by her coach, her friends, her husband. And She Clears, Wins Not Only in Her Age Group, But The Figure Entire Class
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Today, a good Year and a Half Later, it all looks different. Claudia's muscles are no longer defined in this way, she finds it difficult to get up from the couch, her voice is the exhaustion.

She has ME/CFS : Myalgic encephalomyelitis/Chronic fatigue syndrome.
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www.handelsblatt.com

ME/CFS: Die Krankheit, die Millionen Menschen vom Leben ausschließt

Die chronische Multisystemerkrankung ME/CFS macht eine halbe Million Menschen zu Schwerkranken und verursacht einen Milliardenschaden. Therapien fehlen, nun aber könnte sich etwas ändern.
www.handelsblatt.com www.handelsblatt.com
2300-word article, paywalled.

The disease that shuts millions of people out of life​

The chronic multisystem disease ME/CFS renders half a million people severely ill and causes billions in losses. Therapies are lacking, but now something could change.​
Helena Smolak, Isabelle Wermke​
08.11.2026​

Machine translation:
Pharmaceutical companies are keeping a close eye on the field, but so far have not invested on a large scale. “There are no game changers in sight yet,” says Judith Wallenstein, a senior partner at management consultancy Boston Consulting Group (BCG).

Unlike menopause, which has long been recognized as a lucrative market, ME/CFS still lacks biomarkers—that is, characteristic biological features on which clinical trials can be based with the aim of ultimately getting a marketable product approved.

The key question is whether the right patient groups can be clearly identified, treatment success can be measured objectively, and a drug will ultimately be reimbursed, says Hipp, a consultant at Porsche Consulting. For ME/CFS, these three requirements have not yet been adequately met. “But as soon as a study succeeds in a clearly defined patient subgroup, the picture can change quickly.”

There has already been some movement, though mostly by way of Long Covid. US pharmaceutical company Pfizer is supporting a study of the JAK inhibitor abrocitinib, which is approved for atopic dermatitis. It is currently being tested in a Phase II trial for fatigue associated with Long Covid.

According to consultant Wallenstein, weight-loss drugs could also play a role soon: Eli Lilly’s tirzepatide is being tested in a Long Covid study at the Scripps Research institute in La Jolla, California, though not specifically for ME/CFS. The connection is nevertheless close: ME/CFS is not the same as Long Covid, but both are often grouped under the term “post-acute infection syndromes” (PAIS) because they share many symptoms and biological mechanisms.

Immunologist Scheibenbogen hopes that drugs for the disease will be approved within the next few years. Until then, doctors make do with off-label medications—drugs that are not specifically approved for ME/CFS but are used to treat it. These include Valdoxan, approved for severe depression, and Mestinon, approved for the autoimmune disease myasthenia gravis. Patient Anreitter receives saline infusions and takes 17 medications every day, including painkillers and, like Maja, low-dose aripiprazole.
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Half about Germany, half about how medicine's systemic denial of Long Covid has been and continues to be a massive boost to vaccine denial. They have no one but themselves to blame over this. From the start it has been a problem and them ignoring it does not make it go away, except they backed themselves in such a tight corner they can't go back on it without embarrassing a lot of their own. Extremely foolish to promote disinformation like this.
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Germany’s Far Right AfD Leader Alice Weidel is a threat on many levels: “Did you know that BioNTech never brought a marketable product to market before?“It's not long Covid. It's vaccine side effects, from which many people died and still suffer enormous health damage today.
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This one is from a vaccine disinformation promoter:
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"Research funding for Long COVID and ME/CFS in Germany – new report provides overview

A new report by the ME/CFS Research Foundation provides, for the first time, an overview of publicly funded research and healthcare initiatives related to Long COVID and ME/CFS in Germany. The analysis includes 259 joint or single projects receiving a total of 292 million euros in funding over the period 2020–2029. The report covers funding provided by the federal government, state governments, the Innovation Committee at the GBA as well as the DFG, which have been announced or implemented until September 2026. The report conveys the distribution of funding by source and the allocation of funds by diseases, research types and interventions. The data fills a considerable information gap and enable the assessment of the funding priorities set to date by providing a knowledge base that did not previously exist in this form."

 
The return on investment is abysmal. There is clearly blatant mismanagement in the allocation and oversight of those funds. It would be hard to argue that even $1K of value was returned from this, about exactly zero progress was achieved. In fact, one might argue negative progress, given the state of things, and how much psychobehavioral ideology dominates and ruins the entire issue.

The foundations are rotten.
 
Schomerus et al. are at it again:
From Bluesky:

​
We thoroughly demolished the reviewers with numbers and arguments. Paper coming sooooon​
​
I think this is exactly the right paper to publish in a British psych journal​
​
You’ll be able to read it soon!!​
[OCR of screenshot, my emphasis]:​
Re: "No evidence of an association between mental illness stigma and rejection of psychologization in people with long COVID" We're delighted to let you know that your manuscript has been accepted for publication in BMC Psychiatry.
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​
While the editor is expressing sympathy for our “truly unusually demanding revision process,” I’m thinking, huh, where are revision rounds 3–5, which I’m used to from Paper 1? … You really have to want it to publish in this field.​
​

 
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Hybrid ME/CFS Conference on November 14, 2026, in Kassel and online
Annual conference of Fatigatio e.V. – German ME/CFS Association
14. November 2026, 9:30 – ca. 17:00 (GMT+1)

Livestream:


Start of the conference
9:30–10:00 a.m.Reception, meeting and getting to know one another
10:00–10:15 a.m.Welcome from the Board
Care and treatment
10:15–10:45 a.m.Introducing the ME/CFS navigation projectInsa Konitzka | Project Manager of the ME/CFS navigation project, Fatigatio e.V., German ME/CFS Association
10:45–11:15 a.m.Specialized outpatient palliative care for ME/CFS: where do we stand? Opportunities, challenges and prospectsDr. med. Nina Kollmar | Senior Consultant at Klinikum Kassel, specialist in pediatrics, co-project lead of PEDNET-LC, palliative care physician
11:15–11:45 a.m.[TD]Break
Recognition and participation
11:45 a.m.–12:15 p.m.Sick and unheard: on the social recognition of ME/CFSProf. Dr. rer. soc. Eva-Maria Klinkisch | Professor of General Pedagogy and General Didactics at the Catholic University of Applied Sciences Freiburg and sociologist
Biomedical research
12:15–12:45 p.m.3T MR spectroscopy shows a change in the APT-to-PCr ratio in patients with Long COVIDProf. Dr. rer. nat. Gabriele Ende | Acting Head of the Neuroimaging Department at the Central Institute of Mental Health, Mannheim (ZI)
12:45–1:45 p.m.Lunch break
1:45–2:15 p.m.ME/CFS and muscles: myasthenia, mitochondria, markers, treatmentUniv.-Prof. Dr. med. Dr. h. c. Jürgen Steinacker | Professor of Sports and Rehabilitation Medicine at the University of Ulm
2:15–2:45 p.m.Current findings from the National Clinical Study GroupUniv.-Prof. Dr. rer. nat. Birgit Sawitzki | Professor of Translational Immunology at the Institute of Health, Charité, Berlin
2:45–3:15 p.m.Coffee break
Comorbidities
3:15–3:45 p.m.Mast cell activation syndrome: diagnosis and treatmentDr. med. Aline Naomi García Bardon | Specialist in general practice and hemostaseology
3:45–4:15 p.m.Sleep disorders and pathological sleep patterns in Long COVID and ME/CFSDr. med. Claudia Schilling | Specialist in psychiatry and neurology, sleep medicine specialist at the Central Institute of Mental Health (ZI) in Mannheim
4:15–4:30 p.m.Closing remarks from the Board

Please note: The program may be subject to short-notice changes.
 
"No evidence of an association between mental illness stigma and rejection of psychologization in people with long COVID"​

Just to be clear, this means that patients who reject the psychologisation of ME/CFS don't have any stigma toward mental illness?

I am not surprised at all. I have never seen any significant prejudice against mental illness as a category in the ME/CFS patient population. It is a completely bogus accusation against us by the psychologisers who can't handle being justifiably criticised by those on the receiving end their inhumane anti-science horseshit.
 
www.spiegel.de

ME/CFS bei Kindern: Wie schwer die Krankheit das Leben verändert

Annabelle kann ihren Kopf nicht heben, verträgt kein Licht und wird künstlich ernährt. Ihre Schwester Mathilda wacht nachts vor Schmerzen auf. Die Mutter pflegt beide rund um die Uhr. Hat die Familie noch Hoffnung auf Heilung?
www.spiegel.de www.spiegel.de
13-min video on the main page of DER SPIEGEL about 11-year old Annabelle:

“It makes me sad that I’m basically dead.”​


Annabelle can’t lift her head, can’t tolerate light, and receives artificial nutrition. Her sister Mathilda wakes up at night in pain. Their mother cares for both of them around the clock. Does the family still have hope for a cure?​
​

 
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Chandelier said:
www.spiegel.de

ME/CFS bei Kindern: Wie schwer die Krankheit das Leben verändert

Annabelle kann ihren Kopf nicht heben, verträgt kein Licht und wird künstlich ernährt. Ihre Schwester Mathilda wacht nachts vor Schmerzen auf. Die Mutter pflegt beide rund um die Uhr. Hat die Familie noch Hoffnung auf Heilung?
www.spiegel.de www.spiegel.de
13-min video on the main page of DER SPIEGEL about 11-year old Annabelle:

“It makes me sad that I’m basically dead.”​


Annabelle can’t lift her head, can’t tolerate light, and receives artificial nutrition. Her sister Mathilda wakes up at night in pain. Their mother cares for both of them around the clock. Does the family still have hope for a cure?​
​

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Stories about children with ME always hit me particularly hard. I find it incredibly heartbreaking when children develop severe ME and are robbed of so much of their childhood. They can't simply play, spend time with friends, explore the world or enjoy the things that should be part of growing up. And as if that weren't devastating enough for the children themselves, their families have to watch them suffer, often feeling helpless and unable to do anything about it. I can't imagine how emotionally exhausting that must be for everyone involved. These stories really get to me...
 
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