News from Austria and Switzerland

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

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

https://thestoriest.com/health/348725.html

 

From the FB page of the Austrian ME/CFS patient org:

Facebook translation:

Thanks to the WE&ME Foundation, a bio bank is now being worked on at Medizinische Universität Wien an important step for ME/CFS affected & research in .
Many thanks to prof. Elsenhuber-Untersmayr as well as the Ströck family and Prof. Hermison for the years of dedication to ME/CFS and those affected!​

 

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):

 

I think I have contacts in Austria, let me check.

 

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

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:

And in Vienna, Austria:

 

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:

 

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.​