News from Austria and Switzerland

Sean said:
There must be accountability. Letting those responsible for this grotesque catastrophe just slink away quietly into a comfortable retirement is totally unacceptable. All that will do is let it happen again to another group of innocent victims. See FND.
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Important point - even if we ignore the part about justice for the victims or accountability for their actions, preventing future harm is in itself a good enough reason to go after them.
 
Salzburg Human Rights Network STATEMENT ON ME/CFS IN THE FEDERAL STATE OF SALZBURG: A HUMAN RIGHTS DESERT

(translated exerpt from German)
From the point of view of human rights, the situation of ME/CFS patients in Salzburg is a poisoned desert in terms of medical and social reasons: medical mistreatment or non-treatment as well as social law assessment notices that do not reflect existing restrictions are the rule. They result from stigmatization coupled with partly still dominant psychiatric-psychosomatic misconducts of too many doctors and the Pension Insurance Institution (PVA).

According to Article 25 of the Universal Declaration of Human Rights, everyone has the right to a standard of living that guarantees health and well-being. However, the lack of recognition of ME/CFS as a serious physical illness and disability usually leads to the refusal of welfare state protection (rehabation money or occupational disability pension and care allowance), which must then be fought for by judicial means and thereby triggers additional deterioration in health.

In addition, there is a lack of specialized outpatient treatment options. If the solution of the responsible state councilor Gutschi as a planned hub only "coordinates" those affected and additionally burdens instead of relieving them due to lack of referral options, they will be sicker and with their relatives will continue to be put into financial downward spirals - instead of being able to take advantage of adequate treatment as with other similarly complex diseases.

The right to the highest achievable degree of physical and mental health, enshrined in Article 12 of the UN Pact on Economic, Social and Cultural Rights, also implies non-discriminatory access to health care.
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Stellungnahme zu ME/CFS im Bundesland Salzburg: Eine menschenrechtliche Wüste – Plattform für Menschenrechte Salzburg

www.menschenrechte-salzburg.at www.menschenrechte-salzburg.at

(For context Salzburg is a city and a state in Austria)

It’s a network of 30+ ngos in the state of Salzburg in Austria.

it includes
Amnesty Intl Salzburg
Caritas Salzburg
The Greens Salzburg
The Left Party Salzburg
The Austrian Trade Union
etc
 
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www.meinbezirk.at

Benefizevent in Langenwang: Ein Spendenlauf für die Krankheit ME/CFS

Der Mürztaler Verein "G'spia a bunte Wirklichkeit" veranstaltet am 6. September in Langenwang einen Spendenlauf. Das Geld kommt der Langenwangerin Carmen Rinnhofer zu Gute.
www.meinbezirk.at www.meinbezirk.at

ChatGPT Summary

A charity run will be held on September 6, 2025, in Langenwang, organized by the local association "G’spia a bunte Wirklichkeit". The event supports Carmen Rinnhofer, a local woman suffering from severe ME/CFS since a COVID infection in 2022. She has been mostly confined to her darkened room for the past three years due to extreme sensitivity to stimuli and physical exhaustion.

Although the money raised is meant for Carmen, she will donate it to ME/CFS research, continuing her previous fundraising efforts — including a personal campaign for her 30th birthday, which raised €80,000 for the We&Me Foundation in Vienna.

The run will feature four routes (3.5 km, 5.7 km, 10 km running; 5.7 km walking), starting at 16:00 from the Volkshaus. Additional activities include live music, children’s entertainment, and an after-run party. The organizers are still seeking donations and volunteers, and will host an informational evening on August 27 in Langenwang.

The initiative aims not only to raise funds, but also awareness for ME/CFS. Carmen’s parents expressed gratitude and emphasized the importance of keeping this illness in the public’s awareness.
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Yann04 said:
Austrian MEA and Primary Care Med Uni Wien have published a “guide” on how to improve the situation for pwSevereME/CFS. (All in German)
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We have made a thread here. There is an English translation.

The document stresses that it is not a medical guideline but a practical collection of measures from the perspective of those affected and their caregivers.
It will be updated and they welcome suggestions, criticism, and more practical advice based on personal experience.
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The SGME (Swiss MEA) posted this
(translated)

The Social Security and Health Committee of the Council of States (SGK-S) unanimously recommends adopting the motion for a “National Strategy to Improve the Health Situation of People with ME/CFS and Long Covid.”
This is another milestone and an important signal for those affected and their families.
The motion will now come before the Council of States in the autumn session. We are optimistic that after the Federal Council, the National Council, and the Council of States Committee, the entire Council of States will also approve this important concern.
We thank all parliamentarians who have advocated for the motion and also all members of the Social Security and Health Committee!
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No detail as to what this plan actually contians. So am a bit sceptical.

source: https://www.facebook.com/share/p/1YiDrEdUw4/
 
Yann04 said:
No detail as to what this plan actually contians. So am a bit sceptical.
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They added
When a motion is unanimously adopted in committee, it no longer needs to be extensively debated in the Council of States. It is called up by the council president and if no one raises an objection, it is considered adopted. As a rule, there is no objection in this situation.

For the motion on ME & LC, this will presumably happen in the autumn session. Then the federal government must develop a national strategy on ME & LC.

The plan should include the following measures:

- Knowledge securing and transfer in the areas of diagnosis, care and therapy.
- Support for optimal cooperation between specialists, primary healthcare providers, patient organizations and the responsible health care authorities;
- Equal access to diagnostics and effective therapies as well as support for their research;
- Adequate support and recognition by social insurance systems and their experts;
- Promotion of basic and clinical research
- Support for national or cantonal coordination centers for those affected;
- Centrally collect data on ME/CFS and Long COVID;
- Cooperation with European/international reference centers and networks;
- Ensuring financing by the federal government and cantons.
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Not sure exactly what they mean by “should”, like legally binded to, or “I hope it does”.
 
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Longer article on daslamm.ch:
daslamm.ch

Chronisch krank und permanent angezweifelt

In der Schweiz leben rund eine halbe Million Menschen mit Long Covid und ME. Doch sie kämpfen nicht nur gegen eine unheilbare Krankheit – sondern auch gegen Stigma, Fehldiagnosen und lebensbedrohliche Behandlungen.
daslamm.ch daslamm.ch
AI Summary

Key Takeaways​

  • Long COVID and ME/CFS affect a significant number of people in Switzerland, but remain largely neglectedin medical and public discourse.
  • Diagnosis is elusive and slow, averaging years—and most patients endure harmful misdiagnoses and therapies.
  • Medical gaslighting is widespread, causing emotional and physical harm to marginalized patients.
  • Despite increased awareness, nothing has materially changed in the level of support or care provided.
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The article also mentions this study:
Health system support among patients with ME/CFS in Switzerland, 2023, Tschopp
 
www.sn.at

ME/CFS - Königsberger-Ludwig: "Wir nehmen das extrem ernst"

Gesundheitsstaatssekretärin Ulrike Königsberger-Ludwig (SPÖ) erwartet bei der Versorgung von Betroffenen von postakuten Infektionssyndromen (PAIS) wie ME/CFS oder Post Covid bis Jahresende "tatsächlich Fortschritte". Bis dahin soll der entsprechende Aktionsplan in der Zielsteuerungskommission...
www.sn.at www.sn.at

AI Summary
Austrian Health State Secretary Ulrike Königsberger-Ludwig (SPÖ) expects progress by the end of 2025 in the care of people suffering from ME/CFS and Post-Covid. A corresponding action plan is to be adopted this year by the Federal Target Control Commission, involving all relevant stakeholders (doctors, regional governments, social insurance institutions).

Although the original plan from 2024 is being revised, Königsberger-Ludwig emphasizes that its contents are being taken seriously and only adjusted where necessary. The goal is to establish specialized centers and mobile care teams, especially for severely affected patients. Part of the health care funding agreement (600 million euros for hospitals) is specifically allocated for this.

She also takes criticism of the Pension Insurance Institution (PVA) seriously—especially regarding the lack of recognition of ME/CFS and Post-Covid in medical assessments. Improvements are needed to ensure proper social support for those affected.

Hospitals will also need to offer special accommodations, such as darkened rooms, since hospital stays can be extremely stressful for ME/CFS patients.

In terms of prevention, she refers to the importance of air hygiene in public buildings. However, structural changes (like ventilation systems) are not the health ministry’s responsibility, though it aims to raise awareness about health-related prevention.

Current wastewater monitoring shows a moderate rise in COVID-19 infections, but nothing alarming. A broad vaccination campaign against COVID-19 and influenza is planned for the fall.
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https://www.moment.at/story/fuer-die-aus-dem-leben-ausgesperrten-mecfs-fussball-empty-stands/

AI Summary

  • The article spotlights the Empty Stands campaign—an initiative organized by football fans across German-speaking regions to raise visibility for ME/CFS

  • In Vienna, at a regional league match of Wiener Sport-Club, fans displayed a banner reading "Cure ME/CFS – Betroffene glauben", demanding recognition and better treatment for those affected

  • ME/CFS severely limits everyday life—even attending a football match can trigger debilitating crashes. Many fans with moderate disease can no longer participate, let alone more severely affected individuals
  • Empty Stands coordinates actions across 40 club fan communities, with 16 already participating. These include stadium banners and articles in fan publications to highlight the issue during matches

  • Two campaign organizers, Tim (23) and Sonja (35), share their personal stories. Both were previously very active in sports—Tim played handball and football; Sonja was a competitive weightlifter. Now, ME/CFS limits their lives drastically

  • The campaign also serves as a support network, especially via a private Signal group. Members share not only experiences of illness but also moments of connection through football—even if virtually

  • For many, the greatest loss is the communal experience—going to matches, traveling with friends, enjoying the game together. ME/CFS takes away more than health; it erodes a shared part of identity

  • Campaigners aim to give a voice not just to moderately affected individuals, but also to those too ill to even participate in interviews

  • They highlight the invisible nature of ME/CFS—on good days, symptoms may not appear, which leads others to misunderstand the condition

  • Their demands include more research funding, greater public and institutional awareness, and solidarity—from fans, clubs, and society—to help ensure that the "empty stands" may one day be full again
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www.watson.ch

Schwere Form von Long Covid: Informatikprofessor verlässt die ETH

Informatikprofessor Otmar Hilliges leidet unter einer schweren Form von Long Covid und ME/CFS. Nun hat die ETH Zürich kommuniziert, dass Hilliges abtritt.
www.watson.ch www.watson.ch

AI summary:
Severe Form of Long Covid: Computer Science Professor Leaves ETH Zurich
16.07.2025, 10:41

Otmar Hilliges, an Informatikprofessor at ETH Zurich, announced on LinkedIn that he is stepping down due to severe Long Covid and ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). He had been ill for over a year, facing a dramatic worsening of symptoms, especially after his second Covid-19 infection in March 2023. The disease led to complete disability, with Hilliges experiencing what he described as a “system crash.” Despite working from home for several weeks, he eventually had to stop working entirely.

Hilliges had been at ETH Zurich for 12 years, where he was a pioneering figure in augmented reality, human-computer interaction, and machine vision. His research earned international recognition, and he worked closely with talented students and colleagues. He expressed deep gratitude for his time at ETH and for the support from colleagues and friends.

In his LinkedIn post, Hilliges shared his struggle and expressed hope for recovery. He also highlighted the need for funding Long Covid and ME/CFS research. Interestingly, one of his sons also developed Long Covid and ME/CFS, though he has since made progress, while his wife and second son remained healthy.

ETH Zurich expressed their regret at Hilliges' departure, praising his contributions to the field and wishing him a full recovery.
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