News from Austria and Switzerland

Posted by the Austrian patient org on FB (translated by FB):

Press release - ME/CFS supply crisis - tearing down structures instead of building expertise
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In our current press release, we once again draw attention to the supply emergency at ME/CFS. Current developments are fatal for patients.
"There is no single special ambulance for ME/CFS, as is common for other serious and complex diseases in Austria." The affected people and their families are completely alone”, criticized Kevin Thonhofer, Obmann of ÖG ME/CFS.

At the end of August, the new guideline “Guideline S1 for the management of post-viral conditions, for example, post-COVID-19” was published by ÖGAM on behalf of the BMSGPK. The renaming should also account for other postinfectious diseases. "It is even more incomprehensible that ME/CFS is explicitly stabbed out as the most severe form of post Covid," reported Astrid Hainzl, stv. Grand opening of the EYE ME/CFS.

There was also no agreed participation of patients: internal organizations. In addition to this, there are closures of Long Covid ambulances.
We thank everyone who reports and those affected who make the serious illness and the catastrophic supply situation visible!!

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Press release: https://mecfs.at/.../2023_09_MECFS_Versorgungskrise_OeG...
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APA message: https://www.msn.com/.../mecfs-erkrankte.../ar-AA1gwX91
First reports:
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https://www.puls24.at/.../mecfs-erkrankte-warnen.../307555
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https://science.orf.at/stories/3221149/
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https://www.sn.at/.../me-cfs-erkrankte-warnen-vor-noch...
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https://www.vol.at/me-cfs-erkrankte-warnen-vor.../8286019...

This seems to be the long covid guideline they mentioned (Google translated version of the website): https://oegam-at.translate.goog/art...l=auto&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

I haven't taken a closer look yet.
 
Suffering from ME and completely disconnected from life
“You live in the most livable city, but you can’t get out of bed even once in a while.” Sent Christoph Ströck recently joined the X platform, formerly Twitter.It is among the most livable cities in the world. The Viennese has suffered from myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) for over a decade. He ended his post with the following words: “It truly is the most livable city and I miss it.”

Michael Ströck, one of three brothers from the famous Viennese baking family Ströck, explains that his brother Christoph’s lifestyle is severely restricted due to his serious ME/CFS disease. “Christoph has been confined to his room for several years; He can only communicate with the outside world for a few hours a day via the internet. “He is completely disconnected from life.”

ME/CFS can have a very wide range. The spectrum ranges from severe cases that leave people bedridden for long periods of time to milder forms of the disease. This situation is also reflected in the Ströck family; In addition to Christoph, his brother Philipp also suffers from this condition, although it is a little less severe.

ME/CFS
It is an abbreviation for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is a chronic neurological disease that can be caused by infection. The main symptom is exercise intolerance, which can last for hours, days or longer.

Ströck family He founded the We&Me Foundation to advance research on the disease. One million euros will be allocated for the creation of a competence centre. For more information about the foundation and donation options: www.weandmecfs.org
https://thestoriest.com/health/348725.html
 
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Google Translate (original):

Symposium on complications following viral infections with a focus on Long COVID and ME/CFS
Start of the event
November 20, 2023 10:00 a.m
End of the event
November 20, 2023 5:30 p.m

Venue
Hybrid event: University of Veterinary Medicine Vienna (Veterinärplatz 1, 1210 Vienna) and online
The Federal Ministry of Social Affairs, Health, Care and Consumer Protection and Gesundheit Österreich GmbH cordially invite you to attend

Symposium on complications following viral infections with a focus on Long COVID and ME/CFS
The program includes Austrian and international specialist lectures . Detailed information can be found here: PROGRAM

Please note that face-to-face places are limited and will be allocated after registration. Participation is free.

Points were applied for for the Austrian Medical Association’s advanced training program (DFP) .

We request that you register by November 3, 2023 at the latest : REGISTRATION

The programme (Google Translate):

program
10:00 a.m. Opening by Federal Minister Johannes Rauch
Federal Ministry for Social Affairs, Health, Care and
consumer protection

10:10 a.m. Opening and moderation
Deputy GLin Priv.-Doz.in DDr.in Reinhild STRAUSS, MSc
Federal Ministry for Social Affairs, Health, Care and
consumer protection

INTERNATIONAL LEVEL
10:20 a.m. Global Perspective - WHO
Dr Anita Sureshkumar JAIN
Health Emergencies Programs
World Health Organization

10:35 a.m. Global Perspective - OECD
Elina SUZUKI, MSc
Health Division
Organization for Economic Cooperation and Development

10:50 a.m. Long-COVID in Italy: a country perspective
Dr. Graziano ONDER, MD, PhD
Istituto Superiore di Sanità

11:05 a.m. DACH perspective: Germany
Dr. Florentine FRENTZ-HAMERS
Federal Ministry of Health (DE)

11:20 a.m. DACH perspective: Switzerland
Dr. Hilde SCHÄFFLER
Federal Office of Public Health (CH)

11:35 a.m. break
EXPERIENCES AND PERSPECTIVES
Experiences from medical disciplines

11:45 a.m. General practice
Prof. Dr. Kathryn HOFFMANN
Department of Primary Care Medicine
medical university Vienna

12:00 p.m. Internal Medicine
Prim. Doz. Dr. Arshang VALIPOUR
Department of Internal Medicine and Pulmonology
Floridsdorf Clinic

12:15 p.m. Neurology
Dr. Michael STINGL
Specialist in neurology, Vienna
Experiences of sick people and relatives

12:30 p.m. ME/CFS care crisis - situation of those affected
Austria
Astrid HAINZL, MSc
Austrian Society for ME/CFS

12:45 p.m. Experiences of carers
Birgit MEINHARD SCHIEBEL
Interest group of caring relatives

1:00 p.m. lunch break

CURRENT PROJECTS AND ROUND TABLE
2:00 p.m. CFS_CARE and Fatigue Center at the Charité
Prof. Dr. Carmen SCHEIBENBOGEN
Charité - University Medicine Berlin

2:20 p.m. Post-COVID-ME/CFS Kids Bavaria
Prof. Dr. Uta BEHRENDS
Munich Clinic

2:40 p.m. “Care for ME/CFS” project
Prof. DDr. Eva UNTERSMAYR-ELSENHUBER
medical university Vienna

3:00 p.m. round table
Areas of action and future perspectives
Speakers SCHÄFFLER, HOFFMANN, STINGL, MEINHARDSCHIEBEL, UNTERSMAYR-ELSENHUBER

3:45 p.m. break
AUSTRIAN ACTIVITIES

4:00 p.m. Adapted S1 guideline and observational study
Dr. Susanne RABADY
Austrian Society for General and
Family medicine

4:20 p.m. Occupational therapy for post-viral syndromes
Prof.in (FH) Mag.a Dr.in Ursula COSTA
fhg Center for Health Professions Tyrol

4:40 p.m. Long COVID results from stakeholder workshop as well
recent Austria data
Mag. Roman WINKLER, MMSc
Health Austria GmbH

5:00 p.m. Update federal health target control
Dr. Alexandra FERDIN
Federal Ministry for Social Affairs, Health, Care and
consumer protection

5:20 p.m. Summary and closing words
Deputy GLin Priv.-Doz.in DDr.in Reinhild STRAUSS, MSc
Federal Ministry for Social Affairs, Health, Care and
consumer protection
Mag. Roman WINKLER, MMSc
Health Austria GmbH

5:30 p.m. End of the symposium
 
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Hi can any forum members based in Austria or Switzerland help with information about ME Organisations?


We have contacted WE&ME Foundation - https://www.tempi-stiftung.at/ contact@weandmecfs.org https://de.weandmecfs.org/contact Email sent 23 Sep

Österreichische Gesellschaft Für ME/CFS - contact@mecfs.at email sent 14 Sep, received an automated reply


Verein ME/CFS Schweiz - https://www.mecfs.ch/kontakt - Message via the contact form 25 Sep

if you’ve got any connections to these or other organisations please let us know
 
I can see that ME/CFS Treffpunkt Österreich facebook group shared the petition on Sept 26th.

I don't think I know of the associations in Austria unfortunately.

Did you hear back from Gracemarie or Nicole at Verein ME CFS Schweiz?
 
PLANNED REFERENCE CENTER IS INTENDED TO “UPGRADE” ME/CFS DISEASE
The reference center for post-viral diseases recently announced by the Ministry of Health is “a great step” for neurologist Michael Stingl because it “upgrades” the disease ME/CFS, as he said in the APA interview. Myalgic encephalomyelitis/chronic fatigue syndrome has become more widely known as a form of Long Covid, but there are still no contact points, explained the doctor. This is needed in addition to the reference center.

ME/CFS is a topic assigned to neurology, but there are “only a small handful of people in Austria” who deal with it, “and they are completely overrun,” reported the ME/CFS specialist in his chosen doctor’s practice has imposed a stop on admissions in Vienna. “There needs to be a starting point of a contact point where patients can go,” he demanded. Before the Covid pandemic, the number of people affected by ME/CFS in Austria was estimated at 20,000 to 30,000. There are still no exact numbers. The Austrian Society for ME/CFS now speaks of 26,000 to 80,000 sufferers.

“It is of course not the case that a handful of people can handle a problem of this size,” emphasized Stingl. Many people are affected, albeit to different degrees. “Not everyone is bedridden.” The main symptom of ME/CFS is post exertional malaise (PEM). This is an exercise intolerance that causes symptoms, which go well beyond normal exhaustion or tiredness, to worsen after often even mild physical or mental exertion.

Health Minister Johannes Rauch (Greens) announced in mid-November that the planned reference center will act as a central hub to coordinate the transfer of knowledge and research as well as the exchange with practice and to enable those affected to receive medical care based on the latest scientific findings. “The right people have to be there, someone who knows their stuff,” recommended Stingl. “That will be the big challenge.”
Planned reference center is intended to “upgrade” ME/CFS disease - Archyde
 
Seems like there was a demonstration, in the form of a funeral march, for ME/CFS and Long Covid awareness today in Zurich, Switzerland:
Funeral procession, April 6th, 2024
-> today in Zurich <
You will get all the pictures promptly, here under this post. We thank the @mecfs .ch, @sgme .ch and @LongCovid .ch for the support. The first ones are already at the meeting point.


And in Vienna, Austria:
#Lying demo in front of the parliament in #Vienna.

Thanks to everyone who joined us today to raise awareness
of #mecfs !

#Mourning #MECFS #LONGCOVID #POSTCOVID #POSTVAC #mecfsawareness #severeme
 
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From March but I only discovered it today (Google translated):

ME/CFS: Neurology Society invites consensus-building meetings

The Austrian Society of Neurology (ÖGN) invites you to an interdisciplinary “consensus conference” on April 19th on the topic of the multisystem disease ME/CFS. The aim is to create a “consensus statement” that is intended to offer “scientifically based recommendations for action” for those affected, doctors, decision-makers and the public, said the ÖGN in a statement to the APA. The patient organization ÖG MECFS has not yet received an invitation.

(...)

Austrian Society for ME/CFS not included

The Austrian Society for ME/CFS (ÖG ME/CFS) has not yet been invited, as its chairman Kevin Thonhofer told the APA. “As an ME/CFS patient organization, we did not receive an invitation to the planned ÖGN consensus meeting and are therefore unfortunately not at the table as an important stakeholder,” he explained in a statement.

“We welcome all initiatives to improve medical care for ME/CFS patients,” said Thonhofer. "However, these must be based on clinical and scientific expertise on the disease. We have not yet seen this focus at the ÖGN, as shown, for example, by the lack of care for patients in relevant outpatient clinics or the current program of the ÖGN annual meeting." The ÖG ME/CFS hopes “that the interest of the patients and a connection to international scientific findings on ME/CFS will be the focus”. It is also hoped that the patient organization will still be able to "fully participate - in accordance with our health restrictions", Thonhofer also pointed out that taking part in a purely on-site conference is difficult for those affected by ME/CFS.

The WE&ME Foundation, founded by the Ströck bakery family, was invited. However, WE&ME head Marie-Therese Burka told the APA that no response had yet been received when asked what agenda was being pursued at this meeting. When it comes to reaching a consensus, different directions and authorities must be represented, she emphasized. In any case, it would be important for all specialist societies, including neurology, to be present at such a meeting, "since it is a multisystem disease" and interdisciplinary work would be necessary.

Ministry does not participate in consensus-building processes

In response to a request from the APA on Thursday, the Ministry of Health said that the ministry was not taking part in such consensus-building processes. The professional, medical exchange is then taken into account - "and the results are of course included in decision-making processes," emphasized a spokeswoman for Health Minister Johannes Rauch (Greens). At the end of December, the department head explained in an interview with the APA on this topic: "The fact is, it has already been said: you simply cannot say that Long Covid does not exist or that ME/CFS is an illness that is essentially just psychosomatic is." And: “Those affected are rightly upset, feel like they are not being taken seriously and are left alone. We are taking this seriously and taking the appropriate steps,” assured Rauch.

The WE&ME Foundation held a so-called stakeholder conference on the topic of ME/CFS for the second time on Thursday, as it announced in a press release. Those who took part included representatives from the health insurance fund, the City of Vienna and the MedUni Vienna. The self-help organization ÖG ME/CFS, the Pension Insurance Institute and the Vienna Medical Association were also represented.

The work process of the conference organized by the foundation is led by former Health Minister Rudolf Anschober, the broadcast said. In addition to the reference center for research work announced by the current Health Minister Johannes Rauch (Greens), the conference calls for high-quality primary care by practicing doctors as well as several competence centers for specialized care. From a social policy perspective, a reform of the so-called “Assessment Ordinance” is also called for, which is used to determine the degree of impairment of those affected - the aim here is to improve social security.

Full article: https://www-sn-at.translate.goog/pa...en&_x_tr_hl=en&_x_tr_pto=wapp&_x_tr_hist=true
 
Consensus without the participation of everyone isn't really consensus. Doesn't mean it will be bad but, well, it usually is. If you're not invited at the table, usually you're what's for lunch.
 
An article that summarizes the 1st Interdisciplinary Consensus Meeting on post-viral conditions in Austria.

Here is the Google translated version:

Vienna (OTS) - At the invitation of the Austrian Society of Neurology (ÖGN), the 1st interdisciplinary consensus meeting on the topic of “Postviral Conditions” took place, taking into account the classification of “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (ME/CFS). The aim of the ÖGN was to provide a current and evidence-based assessment of the situation in the sense of a To achieve consensus statements on genesis, diagnosis and treatment options for (possible) post-viral conditions.

It was important for the ÖGN to actively involve representatives of those affected in the entire process in order to find out their perspectives, concerns and needs. In addition, the health spokespersons of all political parties represented in parliament and representatives of the Austrian health insurance fund and the pension insurance company were invited to a final round of discussions. This was the first time in Austria that key interest groups, including those affected and their representatives, were involved in such a meeting.

It was opened and moderated by the President of the ÖGN, (Univ.-Prof. Dr.) Christian Enzinger. In his introduction he explained that the reason for this conference was summed up very simply: “It is necessary.”

In his contribution to the definition, Thomas Berger made it clear from the perspective of neuroimmunology that there is no scientific evidence that ME/CFS is an actual neuroimmunological disease. The term “myalgic encephalomyelitis” is therefore outdated and can most plausibly be classified in the group of “post-infectious conditions”, i.e. the subsequent conditions after (viral) infections. The lack of scientific evidence to date on the cause, development and treatment of MS/CSF is also due to the fact that the diagnostic criteria are outdated, unspecific and prone to misdiagnosis. A safe and unambiguous diagnosis according to modern scientific criteria and international standards is the ultimate prerequisite and guarantee for those affected that they are treated with the best possible individual symptomatic therapies to alleviate and improve their symptoms.

Jörg Weber described well-known post-viral conditions in neurology from the perspective of neuroinfectiology and emphasized the importance of understanding the pathophysiology in order to develop targeted therapeutic approaches.

The perspective of those affected was presented by Joachim Hermisson as the father of one of those affected and as a representative of the We & Me Foundation. The ignorance and lack of differentiation between ME/CSF and chronic fatigue are only parts of the helplessness. There are “invisible” patients who are completely helpless and in need of care. The goal is to create diagnostic options. Common goals should be: Comprehensive secondary competence centers: rigorous diagnostics, therapeutic approaches, clinical studies.

Michael Ströck, as the brother of two affected people and as the founder of the We&Me Foundation, added that there is too little research on ME/CSF - also due to too little financial support. He called for more public support and repeated the call for nationwide competence centers. He sees many good efforts and is grateful for the growing support from the various departments.

Diseases of the autonomic nervous system as a result of viral infections have been known for a long time, as the neurologist Walter Struhal explained . Autonomous centers always worked in a multidisciplinary manner with other specialist disciplines such as cardiology, psychiatry, gastroenterology, urology and others. As with many chronic neurological diseases, the focus is on individualized, patient-centered treatment of the symptoms in order to improve the quality of life.

A perspective from the resident specialist with a corresponding focus came from Michael Stingl , who also serves as an advisory board member for the We&Me Foundation. What is important in ME/CFS is the clear distinction between fatigue, which can occur as a symptom in many illnesses, and the post-exertional malaise typical of ME/CFS, where often banal stress leads to a significant deterioration of the condition over days. Due to the current lack of training and further education, this differentiation is often not made in clinical practice, which leads to stressful experiences in the healthcare system for those affected. A differential diagnosis is important; an active diagnosis of ME/CFS, including possible comorbidities, is possible despite all open questions. Contact points are important for those affected, as the care is currently absolutely inadequate.

The perspective of psychiatry came from Martin Aigner. The bio-psycho-social model has long been the basis for psychiatry. Psychological comorbidity figures could also be found in Long Covid syndrome. From a psychiatric perspective, possible differential diagnoses or comorbidities include anxiety disorders, depression, post-traumatic stress disorder and functional physical complaints, physical stress disorders and sleep disorders. From a therapeutic point of view, evidence-based multimodal therapy with medication, relaxation procedures, psychoeducation, cognitive behavioral therapy, physiotherapy, occupational therapy appears to make sense, until specific therapies for certain subgroups can be proven.

The general practitioner Susanne Rabady insisted on help from those affected. A single competence center could help research and is important, but does not yet provide widespread care. She focused on prevention, diagnostics, therapeutic approaches and support from the perspective of family doctors. Comprehensive differential diagnosis is already very important in general medicine, but the challenge with therapy is that there is hardly any evidence. When providing support, it is also important to take away patients' fears. There is still a lot to do, access to specialized knowledge is important, and a special interprofessional training opportunity is part of it. A multidisciplinary examination and workup could help patients and find out more about ME/CFS.

Alexander Rosenkranz represented the field of internal medicine. Post/Viral/Long Covid are heterogeneous clinical pictures without proven causality. There are different explanations for its development, most likely endothelial damage, autoimmunity or neoantigen. The frequency varies and will decrease sharply if herd immunity is maintained.

Eva Untersmayr-Elsenhuber , a representative of immunology, emphasized that the severity of an acute illness is not relevant for the development of a post-infectious illness. In ME/CFS patients, certain immune defects would be represented above average. Classifying patients into certain groups is essential for better and targeted treatment. Research funding is hardly available, but is important and should be expanded.

From the field of pain medicine , Thomas Weber reported that the most important thing is a multimodal approach to the anamnesis in order to be able to establish successful individualized therapy planning. This requires specialized centers involving various specialist groups, but unfortunately these do not currently exist in Austria. Investments must be made in research for experimental therapeutic approaches.

In his closing statement , Christian Enzinger , President of the ÖGN, was extremely satisfied with how the meeting went. However, it has also become clear that a statement must now be written that captures areas of agreement, but also of ambiguity and dissent. On the one hand, this is intended to define fields with a need for further research and, on the other hand, to highlight the need for action for decision-makers in politics and the healthcare system in order to optimize the care of those affected.

Other participants in the discussion were Rudolf Silvan (SPÖ), Josef Smolle (ÖVP), Günter Koderhold (FPÖ), Stefan Gara (NEOS) and Barbara Huemer (The Greens) as well as Valerie Nell-Duxneuner (ÖGK), Arshang Valipour ( City of Vienna/Klink Floridsdorf), Miroslav Krstic (PVA) and Kevin Thonhofer (representative of those affected - Austrian Society for ME/CFS).
 
If anyone has been wondering why ME/CFS is getting so much more attention in Austria in the past few years, a lot of it is due to the fact that two members of one of the richest families in Austria became sick with ME/CFS. This family has been using its influence and money to fight for ME through their founding of the WE&ME foundation.

The WE&ME Foundation (formerly TEMPI Foundation) was established in 2020 by the Ströck family and is situated in Vienna, Austria, where the family is renowned for their "Ströck" bakeries, which have delighted generations with their baked goods.

The Ströck family's journey has been profoundly influenced by the impact of ME/CFS, shaping the essence and purpose of the WE&ME Foundation with unwavering determination. Two brothers, Christoph and Philipp Ströck, both affected by ME/CFS, guide the foundation's mission. Christoph, the younger sibling, was diagnosed in 2016 after years of illness, and his condition worsened due to misconceptions surrounding ME/CFS. In 2018, Philipp, the older sibling, also received a diagnosis.

The family's firsthand experience revealed the scarcity of doctors with expertise in diagnosing and treating ME/CFS. Over the years, the Ströck family has come to realize the significance of the grievances surrounding social security and support for the millions of affected ME/CFS patients.​
 
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