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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ME/CFS Science Blog said:
Anyone knows more about this situation in Zwitserland? Seems a positive development, would be interesting to hear from people there what they expect from it and what it means.
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German press release from https://www.mecfs.ch/blog/die-schwe...trategie-fuer-mecfs-und-long-covid-betroffene
AI Translated Press Release

Media Release
ME/CFS and Long Covid: Switzerland Becomes the First European Country to Adopt a National Strategy to Help Those Affected
Bern, 18 September 2025 – The Council of States has approved a motion calling for a national strategy to improve the health situation of people suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid. The patient organizations Long Covid Switzerland, ME/CFS Switzerland, and the Swiss Society for ME & CFSwelcome this decision. For them, one thing is clear: concrete action must now follow swiftly.

With the clear approval of the motion "National Strategy to Improve the Health Situation of People with ME/CFS and Long Covid," the Council of States follows both the Federal Council and the National Council, which had already expressed their support for the development of a national strategy in the interest of those affected. This decision mandates the federal government to develop a comprehensive strategy together with relevant organizations, specialists, and cantons to improve care and support for individuals with these illnesses.

Current estimates suggest that over 60,000 people in Switzerland live with ME/CFS and around 450,000 with Long Covid – including approximately 18,000 children. Around 70 percent of those affected are women.

The goal of such a national strategy must be to ensure faster diagnostics, appropriate treatment based on the latest scientific findings, and equal access to evidence-based testing, therapies, and medications. Adequate support through social insurance systems is also a key concern.

Significantly Improving the Lives of Those Affected​

For Nicole Spillmann, President of ME/CFS Switzerland, the approval of the motion is a first but important step.

“ME/CFS and Long Covid are finally being acknowledged, and those affected are being seen. The patient organizations hope that this motion will create momentum and raise the necessary awareness for these conditions, ultimately leading to a tangible improvement in the lives of those affected.”
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Brigitte Hilty Haller, President of the Swiss Society for ME & CFS, emphasizes:

“It is essential that we now swiftly initiate discussions about the current care situation with all relevant stakeholders and talk about what can already be done to improve it.”
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Patient Organizations Call for Immediate Implementation of the Following:​

  • Recognition of ME/CFS, Long Covid, and Post-Vac Syndrome as serious illnesses and as illness-related disabilities.
  • Medical points of contact, protection, and support for all those affected – especially children, adolescents, and their families.
  • Access to and reimbursement of off-label medications and treatments.
  • Swift processing of cases and financial security through social insurance systems.
  • Creation of a medical specialist society, or clarification on which existing society will be responsible for ME/CFS, Long Covid, and Post-Vac Syndrome.

In the Medium to Long Term, Further Measures from the Motion Must Also Be Addressed:​

  • Development of specialized competence centers and care networks in all language regions.
  • Establishment of a national research program and development of a cohort.
  • Mandatory training for medical professionals, authorities, and medical assessors.
  • Inclusion of post-infectious illnesses in medical education curricula.
  • Promotion of telemedicine and outpatient care, including home visits for severely affected patients.
  • Involvement of patient organizations in the implementation of the strategy and their official recognition by the federal government (FOPH, FSIO) as experts.

Next Steps Must Happen Quickly​

Lorenz Hess, National Councillor (The Centre, Canton of Bern), initiator of the motion, stated after the decision by the Council of States:

“I expect pragmatic action now. All parties involved must work together to rapidly improve the situation and move forward. We cannot let years pass again before something finally happens.”
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For Chantal Britt, President of Long Covid Switzerland, it is crucial that the federal government starts developing the national strategy together with all stakeholders:

“As patient organizations, we are ready to contribute our experiences and expertise constructively to the dialogue and to develop viable solutions together.”
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The three patient organizations thank Lorenz Hess (National Councillor, The Centre) and the co-signatories Barbara Gysi (SP, SG), Léonore Porchet (The Greens, VD), Bettina Balmer (FDP, ZH), Melanie Mettler (formerly GLP, now Finance Director of the City of Bern), Thomas Knutti (SVP, BE), and Thomas Rechsteiner (The Centre, AI), as well as all members of Parliament for their commitment, which led to this important and long-awaited decision for those affected.

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butter. said:
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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A lot of people in general seem to think that research is what governments pay for, that’s what they pay taxes for. As I have tried to argue before (and often not made myself popular for doing so), outside the US, government research budgets are relatively small compared to the size of the need [hundreds of major conditions and thousands of less common (but sometimes fatal or serious) conditions]. I think it’s a point that needs to be made for this and other reasons but some of the responses I have got are off-putting (for example, causing me to lose sleep from the stress).
 
Source: Swiss parliament Date: September 18, 2025 URL: Google translation from German to English

https://www-parlament-ch.translate....d101.aspx?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en Ref: https://www.swissinfo.ch/eng/health...developing-a-strategy-for-covid-long/90027596

Federal government coordinates long-Covid and ME strategy ---------------------------------------------------------

The Federal Council will develop a national long-COVID and ME strategy with the relevant stakeholders. However, the federal government will only assume coordination tasks in its implementation. The Council of States referred a corresponding motion to the state government on Thursday.

The initiative was initiated by National Councilor Lorenz Hess (Mitte/BE). He called for a strategy for myalgic encephalomyelitis, chronic fatigue syndrome (ME/CFS), and long COVID. The goal is to ensure equally high-quality treatment for all those suffering from these diseases.

This includes timely diagnosis, appropriate treatment based on the latest findings, equal access to effective therapies and medicines, and adequate support from social insurance.

This requires coordination of specialists, the inclusion of information technologies for knowledge transfer, and cooperation at both the national and international levels.

The Council of States' Social and Health Committee, like the National Council, approved the proposal. The Federal Council also proposed its adoption. However, Health Minister Elisabeth Baume-Schneider stated that, given the strained financial situation, the federal government would limit itself to coordination tasks. Implementation would be the responsibility of the healthcare stakeholders.
 
Dolphin said:
However, Health Minister Elisabeth Baume-Schneider stated that, given the strained financial situation, the federal government would limit itself to coordination tasks. Implementation would be the responsibility of the healthcare stakeholders.
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Sounds like the UK Delivery Plan.

Worth noting the health minister also constantly refers to ME/CFS as “chronic fatigue” which raises eyebrows.
 
www.oe24.at

Grüne attackieren Gesundheitsministerin: "Haltlose Behauptungen"

Das Sozialministerium sieht die Versorgung von Patienten mit postakuten Infektionssyndromen wie Long/Post Covid oder ME/CFS derzeit als "flächendeckend gesichert" an.
www.oe24.at www.oe24.at

AI Summary:
Green Party Criticizes Health Minister Over Long Covid Care Claims

Government Claims Coverage for Post-Infection Syndromes is Sufficient

Austria’s Ministry of Social Affairs, led by Health Minister Korinna Schumann (SPÖ), claims that patient care for post-acute infection syndromes (PAIS) — such as Long Covid and ME/CFS — is "comprehensively secured." This statement came in response to a parliamentary inquiry by Green Party MP Ralph Schallmeiner.

However, Schallmeiner harshly criticized the minister’s claim as “baseless,” highlighting a lack of specialized treatment centers and persistent care gaps — concerns that have long been raised by patient advocacy groups and medical experts.

Experts and Patient Advocates Report Severe Care Gaps

Estimates from the Medical University of Vienna suggest that between 70,000 and 80,000 people in Austria are currently affected by ME/CFS. Despite growing awareness since the COVID-19 pandemic, experts say patients still struggle to access adequate medical and social support. Promised specialized clinics remain unavailable.

Criticism has also been directed at the pension insurance institution (PVA), with allegations that patients who can pay privately receive quicker access to care.

Ministry: General Practitioners Are the First Contact Point

The minister’s response to Schallmeiner's inquiry states that general practitioners (GPs) are the first point of contact for patients with ME/CFS or similar conditions. If needed, patients are referred to specialists. The ministry argues that through existing agreements with contracted doctors, care is available across the country.

However, the response also acknowledges that in complex cases, specialized interdisciplinary treatment might be necessary. Despite this, no clear data on how many doctors actually offer such specialized care is currently available.

Data Collection Still "In Preparation"

A central registry of available services for PAIS patients in the outpatient sector does not yet exist. The government says such data collection is "in preparation" and will be part of the 2024–2028 health planning agreement.

Until then, there is no reliable basis for assessing how well patients are actually being served — something Schallmeiner calls a major flaw in the system.

Calls for Specialized Treatment Centers Ignored

Demands for specialized PAIS treatment centers remain unmet. Although €600 million was allocated to hospitals and €300 million to outpatient care via the federal financial agreement, only a portion is designated for PAIS-related initiatives.

In August, both Schumann and Health State Secretary Ulrike Königsberger-Ludwig emphasized the need for progress in PAIS research and treatment. Yet, tangible implementation remains lacking.

Schallmeiner Demands Action Over Promises

MP Schallmeiner accuses both the Ministry and social insurance providers of delaying and undermining the PAIS Action Plan. He demands immediate action: “It’s time for concrete steps, not more delays. The affected patients expect results, not empty promises.”

His key criticism: Without solid data or infrastructure, claims of sufficient care are unsubstantiated and misleading.
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Austria’s Ministry of Social Affairs, led by Health Minister Korinna Schumann (SPÖ), claims that patient care for post-acute infection syndromes (PAIS) — such as Long Covid and ME/CFS — is "comprehensively secured."
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I don't know how this does not constitute a blatant lie, but clearly this has simply become normal. Every single country rates a 0, whether they do nothing at all, or do wrong things. It's not possible to build the foundations to solve such a huge problem on the basis of lies. And this is why every single country rates a plain 0 no matter what.
 
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