What ME/CFS reveals — my speech for the Robert‑Hochner Prize
At the awarding of the Robert‑Hochner Prize 2026 I spoke about what ME/CFS reveals. Our health and political systems fail to respond adequately to new challenges.
Constanze Ertl July 1, 2026
What ME/CFS reveals — my speech at the Robert‑Hochner Prize ceremony
“ME/CFS is when one medical assessor declares you fit for work and another grants you assisted suicide.”
This quote comes from Christoph Ströck. He has been severely ill with ME/CFS for ten years. For nine years he has had to lie on his mattress — as he puts it — in his darkened room, in pain, without a single moment of physical well‑being, completely dependent on his caregivers to survive. With the little strength he has, he has been campaigning for recognition of the disease and for research for years.
Anyone who believes — or perhaps understandably hopes — that Christoph was deliberately exaggerating must, I’m afraid, be disappointed.
The scientist and artist Judith Schoßböck died by assisted suicide in December 2024 at the age of 43 in Upper Austria. Judith wanted to live. She made the best of the cards life dealt her until the end. But her condition continued to deteriorate. In addition to ME/CFS she suffered from other — equally neglected — illnesses. In the end her body even reacted to water with a massive worsening of her condition. A few weeks before Judith’s death, public advocate Bernhard Achitz announced “good” news on the ORF program Bürgeranwalt. After a long fight, the pension insurance PVA had granted Judith a permanent disability pension. Until the end she had — although bedridden since 2021 — only care level 3 out of 7 possible.
Parents under suspicion
ME/CFS plunges the sick people themselves and their relatives into despair. The 82‑year‑old Carinthian Peter Strauss has been primarily responsible for caring for his 47‑year‑old daughter, who is severely ill with ME/CFS, for four years. Before her illness Christina Strauss was a doctor herself. Her father lives in constant worry because he does not know what will become of her if something happens to him. The former major general of the Austrian Armed Forces has already contacted several politicians and tried to draw attention to the care crisis around ME/CFS. He cannot believe how much ME/CFS patients are being let down by the republic he has always believed in.
ME/CFS is also when parents come under suspicion because they want their sick child to receive the best possible diagnosis and treatment. In 2024 the illness began for 14‑year‑old Mia after a Covid infection with severe head and neck pain and strong light sensitivity. Later extreme weakness and severe food intolerances developed. A hospital stay becomes a horror trip for the family. The girl is not helped; instead the parents are accused of locking up and making their child ill. A child welfare report to the youth welfare office follows. Mia has since received the diagnosis ME/CFS — made by a recognized specialist. Mentally Mia is doing well, her parents say. They themselves are a little surprised that she is in such good spirits. Mia’s father sums up the prejudices they were first met with by the pediatrician, then in the hospital and finally at the university clinic: “A young girl is healthy and if she’s not healthy, she belongs with the psychiatrist.”
What ME/CFS reveals
ME/CFS is often called the invisible illness. Those affected may still be able to work part‑time or from home, but they must forgo leisure activities because of their limited energy budget. The severely affected are too ill to leave their homes. The most severely affected are bedridden. They all disappear from their workplaces, their circles of friends, their families.
But ME/CFS is also an illness that reveals a great deal. ME/CFS shows that our health system and our political system are unable to respond in a timely manner to a new reality — to the suffering of tens of thousands of people and their relatives in Austria alone — with substantial improvements. Not new because ME/CFS itself is new, but because the Covid pandemic caused the number of sufferers to rise quickly and sharply. A large proportion of those with long Covid now meet the diagnostic criteria for ME/CFS.
Early on after the start of the pandemic, the few ME/CFS specialists in Austria and the patients themselves warned of exactly this development. Yet within the system they remained outsiders. They are not represented on committees or in major medical societies — nor in political parties or the social partners — and are therefore rarely heard. And when, through great effort, they do manage to make themselves heard, their concerns end up in working groups where people discuss them without them. The conciliators get to speak. And those who manage the status quo and therefore feel no great pressure to change. Major initiatives do not emerge that way.
In my view ME/CFS also reveals what journalism can achieve and what conditions are needed for that. With our investigative project on assessments by the pension insurance PVA, Christian Haberhauer of the APA and Eja Kapeller made visible what had previously been denied: that the diagnosis ME/CFS is usually not recognized in assessments and that people therefore often do not receive social benefits.
That is only possible when investigative work is valued by editors and managers. When the newsroom is not so depleted that everyone has to produce a piece every day to fill the programs. And above all, when journalists have the freedom to take up topics that have not been covered at all or have been insufficiently examined.
ME/CFS has shown me that it is worth it: not only because of this beautiful award, but because I have met so many very strong and impressive people who, despite their severe illness — fortunately often together with their relatives and friends — fight for their rights and for research. If ME/CFS is recognized, cared for, and treated in the future like any other disease, it will be thanks to them.
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