News from Austria and Switzerland

The Ströck family, founders of the We&Me Foundation, seems to keep the pressure up to initiate change in Austria.

AI Summary​

The director of Austria's Pension Insurance Institution (PVA), Winfried Pinggera, is facing accusations regarding his statements about ME/CFS patients. According to Gerhard Ströck, founder of the We&Me Foundation, Pinggera allegedly referred to ME/CFS patients and their doctors as “freeloaders” ("Trittbrettfahrer") and “charlatans” ("Scharlatane") during a meeting in August 2024.

Pinggera denies the accusations, stating the meeting was “constructive” and that the aim was to distinguish between patients who truly need help and those expected to recover.

The Greens (Austrian Green Party) sharply criticized these alleged remarks. Health spokesperson Ralph Schallmeiner stated that such words, if true, were “understandably hurtful and should at the very least be clarified or apologized for”. He also condemned the broader treatment of patients as “harassment, denial of illness, and constant mistrust”, saying this “must change immediately”.

Ströck, whose two sons are severely affected by ME/CFS, had already mentioned the incident in an earlier "krone.tv" interview, and later at a stakeholder conference in November 2024. He expressed disappointment in the PVA’s apparent lack of recognition for ME/CFS as a real illness.

A major investigative report by APA, ORF, and Dossier in May 2024 found that 79% of disability and care benefit applications related to ME/CFS or Long Covid were denied. In over 50% of these cases, ME/CFS or Post-Covid diagnoses were completely disregarded, and in about 40% were reclassified as psychological or psychosomatic disorders. Some patients were even accused of symptom exaggeration ("Aggravation"), dramatization, or simulation.

Despite this, the PVA insists its decisions are based on "objective, fact-based assessments", and that all evaluations are made according to legal standards.

In response to the controversy, the Health Secretary Ulrike Königsberger-Ludwig (SPÖ) stated that ME/CFS is taken seriously, and that an action plan is being developed. It includes:
  • A central contact point for diagnosis and support,
  • A comprehensive overview of available resourcesby the end of the year.
The Green Party has filed two parliamentary questions:
  1. Whether the minister was aware of Pinggera’s alleged comments and whether she shares his views,
  2. What the costs of assessments and counter-assessments are in ME/CFS-related disability claims.
Lastly, ME/CFS has become more visible due to post-COVID syndromes (PAIS). The Medical University of Viennaestimates 70,000–80,000 people in Austria currently suffer from ME/CFS. Triggers include viral infections (e.g., influenza, Epstein-Barr), trauma, or toxins/medications.
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Edit: removed bold formatting.
 
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@Chandelier would you be able to remove the bold formatting by the AI? It’s very difficult to read.

The reclassification of ME/CFS patients as psychosomatic is very problematic. Especially because it means that the assessors are practicing medicine in a completely inappropriate way.
 
Chandelier said:
The Ströck family, founders of the We&Me Foundation, seems to keep the pressure up to initiate change in Austria.


Edit: removed bold formatting.
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Terrible handling from this physician, who it must be pointed out only said things that are widely accepted by the profession, hardly any MD would find them objectionable, even if they were significantly worse, and even if they were much worse in context. Almost no one ever defends up at the most basic level, it's all just punching down, piling on us and lying about us.

It's not about the words. The words don't matter. It's the beliefs behind the opinions. They can avoid using such disrespectful words and it wouldn't matter: they act on the sentiment. I'm sick of all this walking around pretending like those are not the default opinions in medicine, there are worse out there, and many of those worse opinions are also acted on.

Good on the family to keep pressing this. Nothing will change until people with power force things to change. Power is the only thing that matters, we are entirely deprived of it, and this imbalanced is massively exploited to maintain a disastrous status quo.
 
Yann04 said:
An ME/CFS fundraising “Gala” in vienna. Each ticket is 500 Euro!!

No idea what these elite things are like but seems interesting

(website in german)

Zeit zum Hinschauen – Eine Gala zugunsten der ME/CFS Stiftung

zeitzumhinschauen.at zeitzumhinschauen.at

We&ME apparently organising an art auction at this thing aswell!?

I guess one of the richest families in austria getting 2 sons with severe ME/CFS helps…
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They are very likely not even in the TOP 1000 of the richest families in Austria - which is a shame because if they were they could really pump in big sums. The Gala is not organized by WE&ME, but close friends of one of the sons. Statistically speaking there must be hundreds (or even low thousands) of families globally with someone affected with this kind of cash or more doing essentially little to nothing. Stigma, shame and lack of a diagnosis are the most likely culprit for the inaction.
 
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Swiss government tasked with developing strategy for Long Covid​

The government has supported this proposal. “Chronic fatigue symptoms have a profound impact on the social, professional and even family life of the people affected,” said Health Minister Elisabeth Baume-Schneider. We need to improve their situation.”
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In Switzerland, the parliament passed a motion on ME/CFS and long COVID basically telling the government “do something about it”.

Not sure what this means, how it will evolve, but I have to say I’m more worried than happy. I feel like this could unfortunately lead to institutionalisation of BPS stuff.

EDIT: Motion not bill
 
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www.beobachter.ch

15-Jährige mit Long Covid: «Wie lebendig begraben»

Seit drei Jahren lebt die 15-jährige Eliane mit Long Covid. Sie kämpft dafür, dass die Krankheit bei Kindern und Jugendlichen in der Schweiz ernst genommen wird.
www.beobachter.ch www.beobachter.ch
AI Summary:
A 15-year-old girl from Eastern Switzerland, writing under a pseudonym, shares her three-year struggle with Long Covid, a condition that continues to be downplayed despite affecting an estimated 18,000 young people in Switzerland.
Illness and Symptoms
She first fell ill at 12 after a Covid infection in late 2021. Her symptoms include dizziness, headaches, brain fog, post-exertional crashes, sleep problems, severe pain, and panic attacks. For over a year, she could not attend school and even simple activities like putting on ski boots were exhausting. Like many children with Long Covid, she was initially dismissed as having psychological issues before receiving a late formal diagnosis at the Children’s Hospital Zurich.
Daily Life and Isolation
Before her illness she was active in sports; now her days alternate between partial school attendance and long recovery periods. She faced skepticism from peers, household helpers, and even doctors, while losing many friends and social connections. Her mixed-breed dog Lucky provides comfort on the worst days. The lack of educational support was a major problem: her parents, both teachers, had to step in themselves when the school offered little help.
Medical and Social Challenges
There is no cure for Long Covid, and children are particularly vulnerable since few approved treatments exist for them. Some families try off-label options, but medical guidance is patchy. Many physicians still misinterpret symptoms as psychosomatic, fueling stigma. Support from the healthcare system, schools, and insurers remains inadequate. Rehabilitation programs that emphasize activation often worsen symptoms, echoing the experiences of children with ME/CFS, the severe form of post-viral disease.
Coping and Advocacy
What helped her most was connecting with peers: she now moderates a WhatsApp group of around 40 affected children and adolescents, providing mutual support. Alongside therapy, complementary medicine, and pacing strategies, this network restored some hope. She has also begun working with an IV (disability insurance) job coach to explore future career possibilities, accepting that her earlier dream of becoming a doctor may no longer be realistic.
Broader Context
Experts and patient advocates stress the urgent need for independent coaches or case managers to guide families through school, insurance, and medical hurdles. The persistence of psychiatric misdiagnoses and lack of structural support is leaving many young patients like her “feeling buried alive.” Despite this, she senses gradual improvement, now managing up to ten lessons per week—though her illness has already permanently reshaped her youth.
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General Summary​

In recent months, significant challenges faced by ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Post-COVID patients in Austria have been brought to public attention, particularly in relation to the granting of social security benefits by the Austrian Pension Insurance (PVA). The problems are not limited to these conditions, but also extend to other diseases and social insurance issues affecting young adults. Jürgen Holzinger, head of the "Chronisch Krank" (Chronically Ill) association, highlighted that these challenges represent a broader systemic issue, where the recognition of disability and care needs is frequently denied, and applications for benefits are often rejected. The situation is exacerbated by a lack of reliable data on the diseases involved and by the poor quality of medical assessments. Despite these difficulties, legal challenges against PVA decisions have seen some success, though the financial and logistical burdens on patients remain high.

Detailed Summary​

The Austrian Pension Insurance (PVA) has been under heavy criticism for its handling of cases involving ME/CFS and Long/Post-COVID patients. Many applications for disability pensions, rehabilitation benefits, and care allowances have been rejected, despite the significant impairments faced by the patients. A joint investigation by APA, ORF, and the Dossier platform published in May revealed that the majority of PVA-appointed medical experts deemed patients capable of working, even in cases where patients reported severe symptoms.

  • High Rejection Rates: The rejection rate for applications for rehabilitation benefits ("Reha-Geld") stands at an alarming 75%. Holzinger, representing the "Chronisch Krank" association, which supports about 15,000 individuals, emphasized that this problem is not exclusive to post-viral illnesses but extends across various medical conditions. Especially common are issues with the recognition of work incapacity and care needs, particularly for patients with mental health conditions, rare diseases, or undiagnosed illnesses. However, there is no comprehensive data on which diseases are most affected because the PVA records the diagnoses given by the appointed experts, not the original diagnoses submitted by the patients.
  • Diagnosis Issues: The diagnostic process often leads to discrepancies between the conditions patients originally presented with and the diagnoses made by PVA-appointed experts. For instance, ME/CFS or Post-COVID diagnoses are frequently ignored or reclassified as psychological or psychosomatic conditions. In some cases, the diagnosis given is so far removed from the actual condition that it results in inappropriate treatments or rehabilitation measures, potentially causing harm. Holzinger criticized the medical assessments as being of poor quality, often lasting only 15 minutes despite the complexity of the patients' conditions.
  • Low-Quality Medical Assessments: Holzinger pointed out that many of the assessments conducted by PVA-appointed experts were rushed and superficial. Patients often attend these appointments with comprehensive medical documentation, and yet the assessments fail to account for the full extent of their condition. This is particularly problematic when both the ability to work and the need for care are being assessed simultaneously.
  • Legal Challenges and Successes: Legal action against PVA decisions has seen a success rate of 50%, primarily due to the poor quality of the medical assessments. However, pursuing these cases is costly, with legal fees not covered even when patients win their cases. For those who cannot afford legal representation, there are alternatives, such as the "Chronisch Krank" association, which offers more affordable legal assistance, although it remains a financial burden for many patients.
  • Issues with "False Diagnoses": One of the significant challenges patients face is when the PVA issues a rehabilitation benefit based on an incorrect diagnosis, which can then lead to misguided treatment. If the patient's actual condition (e.g., Post-COVID) is misdiagnosed as a mental health issue, they may be required to undergo treatments that are inappropriate and ineffective, potentially worsening their condition. If patients refuse to follow the rehabilitation plan based on a wrong diagnosis, they risk losing their benefits.
  • Young Adults and Social Security Gaps: Holzinger also addressed the specific challenges faced by young adults, particularly those under the age of 18 who, due to a lack of insurance contributions, are excluded from social security benefits like rehabilitation or disability pensions. Upon turning 18, if these individuals are unable to start a job or pursue an education due to their health limitations, they fall through the cracks of the social security system. They may be eligible for family support if they have a disability degree of at least 50%, but this does not provide sufficient financial support in most cases, leading to a "pre-programmed poverty" for many chronically ill young adults.
  • Criticism of National Action Plan (PAIS): Holzinger also criticized the delay in implementing the national action plan (PAIS) for post-acute infection syndromes like Long COVID and ME/CFS, originally proposed by Health Minister Johannes Rauch in 2024. He called the delays "completely incomprehensible" and "catastrophic," as the plan is now not expected to be fully implemented until 2026 or 2027. Holzinger also voiced concerns about the lack of a clear plan for addressing the needs of young people, particularly those suffering from Post-COVID.
  • Call for Inclusion of ME/CFS and Post-COVID in Disability Evaluations: Finally, Holzinger urged that ME/CFS and Post-COVID be formally included in Austria's "Assessment Ordinance" for disability evaluations, which is used to determine the degree of disability. Although a request from the Austrian Society for ME/CFS was rejected in the previous year, Holzinger argued that the rejection was based on bureaucratic resistance and called for a policy change to address the needs of those suffering from these conditions.
In conclusion, the issues faced by patients with ME/CFS and Post-COVID, as well as the broader challenges in Austria’s social security system, highlight systemic problems in recognizing chronic illnesses and ensuring adequate support for affected individuals. While some legal victories have been achieved, the high costs, bureaucratic hurdles, and frequent misdiagnoses remain significant obstacles. Furthermore, the lack of a clear action plan for young adults and those suffering from post-viral syndromes exacerbates the precarious financial situation of these vulnerable groups.
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