News from Austria and Switzerland

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Verzögerung bei Versorgungsplan zu ME/CFS, Post Covid & Co

Die Umsetzung des "Aktionsplans" zu postakuten Infektionssyndromen (PAIS) dürfte sich weiter verzögern. Mit dem Plan soll die medizinische und soziale Versorgung etwa von Post Covid- oder ME/CFS-Patienten verbessert werden. Laut APA-Informationen rechnet man in der mit der Umsetzung befassten...
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AI Summary:
Delays in Action Plan for ME/CFS and Post-COVID Care in Austria

Ongoing Delays in Implementation

The rollout of Austria's national action plan for post-acute infection syndromes (PAIS)—including conditions such as ME/CFS and Post-COVID—is facing further delays. Although the plan was finalized and publicly presented by former Health Minister Johannes Rauch in late 2024, it has not yet been approved by the Federal Target Steering Commission (Bundes-Zielsteuerungskommission), a key decision-making body consisting of federal, regional, and social insurance representatives. A new approval is now expected only by mid-2026.

Lack of Consensus and Political Roadblocks

The action plan requires consensus among multiple stakeholders to be legally binding. However, resistance from federal states and the umbrella organization of social insurance providers has stalled progress. While the new State Secretary for Health, Ulrike Königsberger-Ludwig, expressed hope in August 2025 for approval by the end of the year, internal sources now cite mid-2026 as a more realistic target.

A key challenge remains funding, along with unresolved technical and medical issues. The Health Austria GmbH (GÖG), which is responsible for the technical groundwork, emphasizes that it is not part of the decision-making process but acknowledges the urgency of improving care structures for PAIS patients.

Four Main Areas of Disagreement

The delay centers on four unresolved issues:

  1. Medical Definition of PAIS
    There is no agreed-upon definition of PAIS, including how it differs from Long COVID and other conditions. The National Reference Center for Post-Viral Syndromes at the Medical University of Vienna has provided a framework, but some stakeholders continue to question its validity.
  2. Estimating Patient Numbers
    Accurate case numbers are hard to determine due to the lack of mandatory diagnostic coding in outpatient care. Alternative data sources—like sick leave records or care allowance assessments—are being considered, but estimates still vary widely depending on the methodology.
  3. Assessment of Care Needs
    Without reliable data, determining the level of healthcare infrastructure needed is difficult. The goal is to create a unified, evidence-based understanding to ensure effective planning.
  4. Nationwide Care Strategy
    A cohesive, cross-state strategy can only be developed once definitions and patient numbers are clarified. It requires clear roles, tiered care models, and secure funding. While pilot projects in Salzburg, Vienna, and Eisenstadt are in planning, none have yet been implemented. Some patient groups have criticized existing concepts, calling them inadequate.
Criticism from Patient Groups and Experts

Patient representatives and medical societies have long criticized the inadequate care for ME/CFS and Long COVID sufferers. A recent statement from the Ministry of Social Affairs, claiming "nationwide coverage" for PAIS patients, was strongly disputed by advocacy groups, who say this does not reflect the real-life struggles of affected individuals.

The Pension Insurance Authority (PVA) also faces scrutiny for frequently rejecting applications for disability pensions or temporary rehabilitation allowances—even from severely affected patients. Investigative reports from May 2025 confirmed these concerns.

Conclusion: A Long Road Ahead

Despite a well-developed action plan, political, medical, and logistical hurdles continue to delay the implementation of comprehensive care for PAIS patients. Without a unified agreement and commitment from all system partners, Austria remains without a functional and nationwide support structure for thousands suffering from ME/CFS, Post-COVID, and related conditions.
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That's a lot of words to say that some people are working hard to block this from happening, in secret, behind closed doors. Same as always, which is very significant and telling.

No system can function with this much sabotage from within, but then again institutions exist for no other purpose than to promote the interests of those who control it, so this is hardly surprising.

The most frustrating part is that it's mainly disastrous because it's entirely political, instead of being medical or scientific, but also because it's terrible politics. The absolute worst way to do politics, at least if the intent is to produce good outcomes. It's almost never possible in politics to have everyone agree on a course of action, consensus is almost never achievable.

Someone will always be unhappy about the outcome, but here it's done in a way that is completely different about outcomes for the only stakeholders: the patients. An entire system tuned to punch down, especially one where many are happiest with the outcomes that are the worst for us, and they control everything. Good political outcomes are all about compromise.

But here the total imbalance of power can block everything indefinitely because of radicals with an extremist position who make it impossible to achieve a good outcomes. Bad medicine. Bad science. Even worse politics. Good grief, we are in such terrible hands.
 
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m.noen.at

Künstler lädt zur Benefiz-Malaktion für Menschen mit ME/CFS

Der Langenzersdorfer Josef Zinsberger öffnet am 18. und 19. Oktober im Rahmen der „Tage der offenen Ateliers“ wieder seine „Galerie-le-art“. Eine Benefiz-Malaktion steht im Mittelpunkt – zugunsten der Österreichischen Gesellschaft für ME/CFS. Ein Projekt, das dem Künstler persönlich sehr am...
m.noen.at m.noen.at

Charity Art Event for ME/CFS Awareness by Josef Zinsberger

On October 18 and 19, artist Josef Zinsberger will open the doors of his "Galerie-le-art" in Langenzersdorf as part of the "Open Studio Days" in Lower Austria. This year's focus is a special charity painting event in support of the Austrian Society for ME/CFS, an organization that assists people suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The event is especially meaningful to Zinsberger, whose daughter is affected by the illness.

Visitors are invited to actively participate by creating their own artworks either on-site or at home. All necessary materials—including paint, brushes, and canvases—will be provided free of charge. For each finished painting, a sponsor donates 30 euros. The individual pieces will be combined into a large collaborative mosaic that will later be presented to the public.

In addition to the group painting activity, Zinsberger is offering several of his own artworks for donation. All proceeds will go directly to the charitable cause.

The event will also feature works by other artists such as Bea Springer, Erich Lifka, Clea Regner, Werner Scheidl, Gerald Bauer, Kristina Holl, and guest artist Franco Braggio from Italy.

Participants can pick up their canvases starting September 15 after registering in advance, with the final deadline for submissions being October 30. Painting is also possible directly in the gallery during the event.

Contact and registration:
Josef Zinsberger – Galerie-le-art
Praunstraße 31, Langenzersdorf, Austria
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AI Summary:
Half a million people with Long COVID are waiting for help – Zurich should take the lead


Chronic fatigue, pain, and debilitating exhaustion after minimal exertion are hallmarks of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a severe illness that can drastically alter the lives of those affected. Tasks like working, socializing, or even reading a book become overwhelming challenges. Though often triggered by viral infections such as the flu or COVID-19, the incidence of ME/CFS in Switzerland has doubled since the onset of the COVID-19 pandemic. Currently, it is estimated that over 60,000 people in Switzerland suffer from ME/CFS, while around 450,000 individuals live with Long COVID. The majority of those affected, around 70%, are women.


Lack of Diagnosis and Treatment​


Despite its widespread impact, ME/CFS remains poorly understood, with no definitive test for diagnosis and no cure. Treatments primarily focus on symptom management. The disease is not even included in medical school curricula, leaving many healthcare providers unfamiliar with it. As a result, many patients face dismissive attitudes, often being told their illness is merely "psychological," further exacerbating their suffering.


Renata Grünenfelder, a nursing expert and member of the Zürich Cantonal Council, has witnessed firsthand the frustration and desperation of families whose loved ones suffer from ME/CFS or Long COVID. She recalls multiple instances where relatives brought their sick family members to the emergency room at the University Hospital Zurich, feeling helpless as their conditions worsened and they received little support.


Political Action for Coordinated Care​


In response to these challenges, Grünenfelder and other members of the Zürich Cantonal Council from parties including AL, EVP, the Greens, and GLP have introduced a motion calling for a coordinated care system for ME/CFS and Long COVID patients in the canton. This initiative seeks to create a regional strategy to address the needs of those affected, rather than waiting for the national plan, which is still in development. The federal government has recently approved the creation of a national strategy, which is expected to be drafted by 2027, but Grünenfelder argues that Zürich should lead the way and take action now.


Proposal for Specialized Mobile Teams​


One key proposal in the motion is the establishment of mobile, specialized teams that would provide support to patients in their homes across the canton. These teams would offer both medical care and assistance with navigating bureaucratic challenges related to insurance and other administrative matters. Grünenfelder emphasizes that this approach would not only improve patients' quality of life but also reduce long-term costs by preventing unnecessary social welfare claims.


Need for Awareness and Training​


Nicole Spillmann, president of the ME/CFS Switzerland Association, emphasizes the importance of an awareness campaign about the disease. She points out that even healthcare professionals often struggle to recognize and manage the complex and diffuse symptoms of ME/CFS and Long COVID. Spillmann advocates for specific training for medical professionals, social insurance bodies, and the general public, as well as better coordination between different sectors involved in patient care. The goal is to stabilize patients and prevent long-term disability, which ultimately reduces overall costs.


Economic Impact​


The economic burden of ME/CFS and Long COVID is already significant in countries like Germany, where over 1.5 million people are affected. Research there has estimated that the cost of these conditions will exceed 63 billion euros in 2024 alone, with total costs for the period from 2020 to 2024 reaching approximately 254 billion euros. Grünenfelder argues that investing in specialized care not only alleviates suffering but also provides long-term economic benefits by reducing the need for social welfare support.


Political Divisions in Zürich​


The motion is set to be debated in the Zürich Cantonal Council, and the outcome is uncertain. While parties on the left, including the SP, AL, Greens, GLP, and EVP, have pledged support, the right-wing SVP, FDP, and Centre parties have opposed the motion. This creates a political divide in the council, with the left-wing bloc holding a slight advantage. If the motion is approved, the Zürich government would have two years to produce a report and a proposal for action, by which time the national strategy will likely have already been developed.


Grünenfelder stresses the importance of Zürich addressing the issue now, so that the canton can act swiftly when the national plan is ready.
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Political Action for Coordinated Care​


In response to these challenges, Grünenfelder and other members of the Zürich Cantonal Council from parties including AL, EVP, the Greens, and GLP have introduced a motion calling for a coordinated care system for ME/CFS and Long COVID patients in the canton. This initiative seeks to create a regional strategy to address the needs of those affected, rather than waiting for the national plan, which is still in development. The federal government has recently approved the creation of a national strategy, which is expected to be drafted by 2027, but Grünenfelder argues that Zürich should lead the way and take action now.


Proposal for Specialized Mobile Teams​

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oh wow this actually sounds like it could be amazing!

The motion is set to be debated in the Zürich Cantonal Council, and the outcome is uncertain. While parties on the left, including the SP, AL, Greens, GLP, and EVP, have pledged support, the right-wing SVP, FDP, and Centre parties have opposed the motion. This creates a political divide in the council, with the left-wing bloc holding a slight advantage. If the motion is approved, the Zürich government would have two years to produce a report and a proposal for action, by which time the national strategy will likely have already been developed.
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Not suprised at all, but disappointed.
 
The "ME/CFS Call 2026 – Fellowships" was published on October 14, 2025. This call is aimed at early career researchers in the field of ME/CFS who wish to complete a six-month research stay at a research institution in Vienna or abroad. The ME/CFS Fellowship Program aims to strengthen the ME/CFS community by supporting outstanding young researchers and promoting the exchange of expertise.

This call for proposals is co-funded by the WE&ME Foundation and the WWTF. A total of €200,000 has been allocated for this call. The maximum grant per fellowship is €40,000.

Deadline: February 3, 2026 – 2:00 PM
The funding decision is expected in March 2026.

Early career researchers in the field of ME/CFS and potential hosts interested in this call for applications are invited to register and connect on the networking platform : https://www.b2match.com/e/me-cfs-fellowship

www.wwtf.at

Life Sciences - Wiener Wissenschafts-, Forschungs- und Technologiefonds

Life Sciences
www.wwtf.at
 
www.kleinezeitung.at

Rehageld und Berufsunfähigkeit: PVA weist Mehrzahl der ME/CFS-Anträge ab

Neue Daten zeigen, dass die PVA kaum einen Umgang mit ME/CFS-Betroffenen findet. Auch der Aktionsplan, der die Versorgung für Betroffene in Österreich verbessern soll, liegt weiter auf Eis.
www.kleinezeitung.at www.kleinezeitung.at

AI Summary:
PVA rejects most ME/CFS applications

Rising Numbers and High Rejection Rates
New data reveal that Austria’s Pension Insurance Institution (PVA) continues to struggle with handling cases of ME/CFS, a severe and incurable multisystem disease. Since 2019, applications for disability or rehabilitation pensions due to ME/CFS have surged by 1,700 percent—from 16 cases in 2019 to 288 in 2024. However, the rejection rate has increased sharply as well: while 57 percent of applications were denied in 2022, 66 percent were rejected in 2024.

Difficulties in the Assessment Process
According to ME/CFS specialist Michael Stingl, it remains “extremely difficult” for patients to obtain rehabilitation benefits, despite their severe impairments. He criticized that the main symptom—Post-exertional Malaise (PEM)—is often ignored in evaluations. The resulting overexertion during assessments frequently worsens patients’ conditions. Moreover, the PVA does not record the diagnoses underlying applications, only those assigned by its medical examiners. Critics argue that ME/CFS diagnoses are often dismissed or replaced with other conditions.

Lack of Training for Examiners
A parliamentary inquiry by Green Party MP Ralph Schallmeiner highlighted concerns about insufficient training for PVA assessors. While the Health Ministry claims assessments follow high standards, it also admits that specialized training for all medical conditions is “not possible.” Although assessors must be certified and recertified every five years, there are no requirements regarding ME/CFS-specific education.

Unimplemented Action Plan
A national action plan for post-acute infection syndromes (PAIS), including ME/CFS, remains unimplemented. There are still no public contact points for patients in Austria. Disagreements over the definition of ME/CFS further delay progress, despite its international recognition by the WHO since 1969.
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AI translation:

It is an illness that has been ignored for decades – ME/CFS. The abbreviation stands for Myalgic Encephalomyelitis – Chronic Fatigue Syndrome. Although tens of thousands of people in Austria suffer from it, there is far too little research into its causes. The Ströck family, who also own a bakery business, have founded a foundation to support research, as two of their sons are affected by ME/CFS. Four friends of Christoph Ströck therefore organized a fundraising gala.
 
Next Wednesday, November 19, starting at 6 p.m., the grand charity gala “Time to Look Closer” for ME/CFS research will take place at Palais Coburg, in support of the WE & ME Foundation.

AI translation:
“ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is often misunderstood or misdiagnosed, which can lead to years of suffering without adequate medical care,” states the WE & ME Foundation, founded in Vienna in 2020 by the Ströck family. Brothers Christoph and Philipp Ströck were diagnosed with ME/CFS in 2016 and 2018 respectively. The foundation funds biomedical research, supports medical education, and initiates awareness campaigns.
…
Next Wednesday, November 19, starting at 6 p.m., the grand charity gala “Time to Look Closer” for ME/CFS research will take place at Palais Coburg, in support of the WE & ME Foundation. One hundred percent of donations will go directly to research. The gala is organized by four dedicated individuals who became aware of ME/CFS through the fate of a close childhood friend affected by the illness.

Mikis Waschl, one of the organizers, says: “We want to help improve the situation for people with ME/CFS in Austria and advance research into this terrible disease. Sadly, our friend belongs to the group of the most severely affected — the illness has completely taken him out of life. ME/CFS is a living nightmare. Something has to change.”
…
The gala will be hosted by Claudia Stöckl, with artistic contributions from Cornelius Obonya and Peta Klotzberg. A live music act will be performed by Julian Le Play & Cocktails.

More information about the illness, the gala, and ways to donate to ME/CFS research can be found at

zeitzumhinschauen.at and weandmecfs.org
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kurier.at

Chronische Erkrankung ME/CFS: "Es muss sich etwas ändern"

Große ME/CFS-Charity-Gala kommende Woche. Neue Initiative will die Forschung zu ME/CFS vorantreiben und die Stiftung der Familie Ströck unterstützen.
kurier.at kurier.at
 
Blick has an interview with a lawyer about how prejudice influences disability insurance decisions in Switzerland:
www.blick.ch

IV-Anerkennung: Wie Vorurteile den Entscheid beeinflussen

Fibromyalgie-Patientinnen leiden unter chronischen Schmerzen – doch die IV glaubt ihnen oft nicht, weil sich die Krankheit medizinisch nicht nachweisen lässt. Anwältin Stephanie C. Elms kritisiert das System und wünscht sich mehr Menschlichkeit.
www.blick.ch www.blick.ch
How Prejudice Influences Disability Insurance Decisions

Summary​

Fibromyalgia patients experience chronic pain, but Switzerland’s Disability Insurance (IV) often doubts them because the illness cannot be medically proven. Lawyer Stephanie C. Elms, an expert in social insurance law, handles many such cases and criticises the system for relying too little on medical history and too much on superficial impressions. Because fibromyalgia is not objectively measurable, insurers depend largely on patients’ subjective reports, which they find difficult to trust.

According to Elms, conditions that can be measured or visualised are easy to judge, but fibromyalgia cannot be tested. Therefore, doctors must rely heavily on patients’ statements. IV assessments should consider medical files, treating doctors, and family members. When this is not done, reports become superficial and often conclude that symptoms are “not objectively verifiable.”

Critical patterns emerge: if a report results in a denial of benefits, the IV typically accepts it without further questions. Only when payments are at stake does the IV often demand a new assessment. Even external factors can be interpreted negatively. In the case of Natalie Schmid, assessors criticised her for looking “too well-groomed” and “too friendly.” Elms has seen similar cases where manicured hands or a tidy appearance were used to argue against severe impairment.

Challenging a negative IV decision is possible but requires time, money, and strength that many sick individuals lack. Some insurers might benefit economically from initial refusals. As a result, many fall through the cracks and end up on social assistance despite being ill.

Elms notes that “women’s diseases” such as migraines or fibromyalgia are particularly under-recognised and insufficiently researched. She calls for more humanity in the system.

And also a case study describing the ordeal of a fibromyalgia sufferer:
www.blick.ch

Frau (53) hat Fibromyalgie – aber keine Chance auf IV-Geld

Natalie Schmid (53) aus Derendingen SO kämpft gegen Fibromyalgie – und gegen die IV. Trotz massiver Schmerzen erkennt die Versicherung keine Arbeitsunfähigkeit an. Begründung: Schmid sei zu gepflegt, zu freundlich und ihr Leidensdruck zu gering. Experten widersprechen.
www.blick.ch www.blick.ch
“I Am Too Sick to Work – but Too Healthy for Disability Insurance”

Background of the Case
Natalie Schmid, a 53-year-old woman from Derendingen, suffers from Fibromyalgia (FMS), a chronic pain disorder that strikes in severe episodes and affects every aspect of her daily life. Despite multiple medical diagnoses confirming the condition, the Disability Insurance (IV) of Solothurn refuses to acknowledge any work incapacity.

Reasons for Rejection
According to a nearly 90-page IV assessment from 2023, Schmid’s “level of suffering” is considered insufficient. The report claims she appeared “too well-groomed,” “friendly,” and “positive,” which the IV interprets as signs against severe impairment. Specialists and representatives of the Swiss Fibromyalgia Association disagree, pointing to a general lack of knowledge about the disease.

Schmid’s Health Decline
Schmid’s problems began in 2018 after a year of working up to four jobs a day to support her family during her husband’s burnout. Her body eventually collapsed, leading to widespread pain, psychological strain, and a diagnosis of FMS. Between 2021 and 2023, she lost nearly half her body weight and struggles with basic activities during pain episodes.

Problems in the Assessment Process
Although several experts confirmed the diagnosis, the IV ordered an interdisciplinary evaluation that relied heavily on questionnaires rather than thorough examinations. Her second application in 2025 was dismissed without consulting a doctor. The family cannot afford legal representation to contest these decisions.

Broader Issues
Fibromyalgia is clinically diagnosed and not measurable, creating significant room for interpretation within the IV. Experts argue that patients are often left on their own and that institutional knowledge is lacking. Schmid hopes her story encourages others and highlights how many fall through the system’s cracks.
 
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