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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