Austria: WE&ME Foundation
Damn right!
(Maybe posted elsewhere but I saw it on Xitter, sorry)
It's like the road runner cartoons, when the coyote has stepped over the ledge and doesn't fall until he looks down, except here it avoids looking at the mountain of death and misery this evil ideology has inflicted, and chooses to add to it instead of doing anything ethical about it. We can't be nice about this, there is no neutrality in the face of evil. But as the main lesson from WWII and the nature of evil revealed: evil is banal, and it usually works not through intentional infliction of suffering but through indifference to it. It simply normalizes it, turns bad into good and good into bad.Christoph Ströck said:
(Maybe posted elsewhere but I saw it on Xitter, sorry)
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Nice! Looks like quite an event, some good pictures of people enjoying themselves and being well fed in a very fancy room while being gently persuaded to part with their cash for a good cause! Something worth making a song and dance about (I don’t think there was dancing though, only singing by the looks of it).
And a powerful message from Gabriele and Gerhard Ströck
And a powerful message from Gabriele and Gerhard Ströck
Benjamin Missbach
Established Member (Voting Rights)
Michael Werba, the bassooonist legend is very engaged with ME/CFS and very helpful. I helped him to set up different activities in the last years. One of the outcomes is a Rotary Action group with the goal to activate Rotary clubs worldwide (donations) and raise awareness for the disease. Unfortunately the website is in german language only, but here is the eglish excerpt
"The Rotary Group ME/CFS Support, registered in Austria as the association ME/CFS Support, was established with the aim of raising the greatest possible amount of funding for the implementation of concrete large-scale projects in support of people with ME/CFS. This is made possible through the cross-border collaboration of Rotary Clubs as members of the Rotary Group ME/CFS – Support / ME/CFS Support, within the worldwide Rotary network.
As President of the Rotary Club Mödling in 2024/25, Michael Werba saw, while implementing effective projects through his club—such as supporting people who are ill and providing further education and training for doctors and nursing staff—that the need for humanitarian assistance among people of all ages worldwide is enormous. A particularly large number of those affected are young people, including adolescents from the age of 12.
As a committed Rotarian, this led him to decide to establish an association whose aim is to bring together Rotary Clubs worldwide to implement meaningful large-scale projects to support people with ME/CFS. From now on, these projects will be presented individually and in detail on this website and proposed for implementation.
To this end, he brought together respected Rotarians, doctors, and scientists, all of whom support and contribute their expertise to this association (organizational chart – click to view). To establish this platform, 50 supporters and four supporting clubs from five countries and four Rotary International zones were submitted.
We all know how much effort is involved for an individual Rotary Club in implementing a Global Grant, as well as in finding supporting clubs for a joint large-scale project. Therefore, this association also provides assistance with the implementation of ME/CFS-related grants.
At present, interest in the German-speaking region is very strong, and the initiative is now expanding into France and Poland.
One of the main purposes of this association is to consolidate information about ME/CFS and to communicate it to the public.
Many clubs responded extremely positively to the announcement of the establishment of such an association and immediately offered their support and assistance.
For membership inquiries, our contact person is Board Member Walter Ebner (Rotary Club Gmunden), who has extensive experience with international Rotary networks, including the Inter-Country Committees (ICC)."
--> https://www.rag-mecfs.org
get in touch, if you know people who are in this space and want to get involved via rotary.
That’s brilliant @Benjamin Missbach the Rotary Club are exactly the sort of mainstream institution we need to accept ME/CFS and having them involved in fundraising certainly helps give a respectability and reach beyond what we currently see that can bring in more funds.
I really liked seeing this gala event. A great way to make people feel good about supporting us. I hope we can see more of this from others.
I really liked seeing this gala event. A great way to make people feel good about supporting us. I hope we can see more of this from others.
Hoopoe
Senior Member (Voting Rights)
The Italian Rotary Club has meetings near where I live and I thought about presenting something about ME/CFS but don't know how to get started and don't know anyone on the inside. I'm also not affiliated with any organisation that is raising funds.
Any suggestions?
Any suggestions?
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Peter T
Senior Member (Voting Rights)
My knowledge of the Rotary Club, and similar groupings such as the Round Table, the Ladies Circle and the Soroptimists is sixty years out of date, my parents and their friends were members of these organisations at various stages. Not to devalue the excellent work they do, my recollections were that they were primarily social networks, often new chairpersons or presidents would pick the next area they supported. Many people joined to cement their place in local society, and to meet the ‘right’ people in their local community. So it seems to me that the best way to approach them is through making personal contacts, seeing if you could interest your local chair or secretary.
Looking at the webpage of my local Rotary Club they seem most interested in using locally based events for fundraising, such as horse riding events, golf tournaments or the traditional local ploughing competition, and then applying the money raised to both local and wider good causes. Approaching your local groups as an individual, could involve pitching an ME cause to benefit from their fundraising or somehow pitching an event they could hold that would both have local interest and serve ME related charitable ends. Also they seem to have regular speaker events, so you could suggest a good speaker on ME related topics. Alternatively a local ME group could make the contact, affiliated membership is an option, to suggest a joint event. For example such as opening an exceptional private garden for the day with the Rotary Club organising marshalling, car parking and helping with refreshments and publicity.
It seems to me the focus should be on doing something together, something that brings people together having a good time as well as benefiting the good cause.
(Added - Just looked up Mödling on Google maps and it is on the edge of Vienna, perhaps meaning that it would be easier to interest them in a broader approach to ME including medical training and service provision, where as I suspect my local group being a much more rural area might be more interested in more down to earth practical issues.)
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Benjamin Missbach
Established Member (Voting Rights)
@Hoopoe: so the Rotary Action Group Michael Werba is building is international. I’m llt part of any of these clubs, but as far as I understood it, the Action group is conceptualize to integrate local activities around the world. PM me or write me an email (Benjamin.missbach@wwtf.at) so I can introduce you to Michael.
Andy
Senior Member (Voting rights)
HI @Benjamin Missbach , a quick piece of feedback about the WE&ME website.
Is there any possibility of it being revamped to include a dark mode option? It is undoubtedly a well designed website but it is very bright for my eyes, and I'm sure that will be the case for many other patients. Reader view, available in most browsers, can obviously help if set up to but something designed to be far less bright from the start would be more ideal for many of us. Perhaps you could pass this on?
Is there any possibility of it being revamped to include a dark mode option? It is undoubtedly a well designed website but it is very bright for my eyes, and I'm sure that will be the case for many other patients. Reader view, available in most browsers, can obviously help if set up to but something designed to be far less bright from the start would be more ideal for many of us. Perhaps you could pass this on?
Benjamin Missbach
Established Member (Voting Rights)
Hi Andy; thanks for pointing this out. We have been getting feedback on this from others as well, that’s why we decided to work on a new website that will hopefully go-live early 2027. We will build all the features necessary to be max accessible for patients. No moving „Mantschgerl“, we will introduce a calm mode, reader view…
It is co-developed with patients, but we need a little more time, because we want to do it right.
Andy
Senior Member (Voting rights)
Thanks for responding so quickly, that's great to hear it's already being addressed.
Chandelier
Senior Member (Voting Rights)
Christoph Ströck via Twitter.
Machine translation:
Machine translation:
Chandelier
Senior Member (Voting Rights)
Ausstellerverzeichnis, Online Broschüre, Newsletter, Galerien, Kunsthändler, Antiquitäten
Das sind die Aussteller:innen der ART&ANTIQUE in der HOFBURG Vienna
www.artantique-hofburg.at
There will be an art exhibition by WE&ME from November 12-16 in Vienna.
Machine Translation:
Chandelier
Senior Member (Voting Rights)
Wien baut Vorreiterrolle bei ME/CFS-Forschung und -Versorgung aus
Stadt Wien, WWTF und WE&ME Stiftung: Rund zwei Millionen Euro für die bisher größten ME/CFS-Forschungsprojekte Österreichs – PAIS-Ambulanz ab 2027
Machine translation:
Vienna strengthens its pioneering role in ME/CFS research and care
City of Vienna, WWTF and WE&ME Foundation: Around €2 million for Austria’s largest ME/CFS research projects to date – PAIS outpatient clinic from 2027
Vienna (OTS) – Two years ago, Vienna began specifically funding research into ME/CFS. Today, the results are becoming clear: The Vienna Science and Technology Fund (WWTF), together with the WE&ME Foundation, is awarding two Consolidation Grants of around one million euros each—the largest individual grants for ME/CFS research in Austria to date.
Mayor Michael Ludwig presented the projects today, Tuesday, together with WWTF President Michael Häupl and Gerhard Ströck, a board member of the WE&ME Foundation, in the ballroom of Vienna City Hall. Since 2024, the WWTF and the WE&ME Foundation have jointly provided around €3.1 million for ME/CFS research in Vienna. “ME/CFS is not a rare disease,” Ludwig stressed.
An estimated 70,000 to 80,000 people in Austria are affected—more than have multiple sclerosis. Around 60 percent of those affected are partially unable to work, and about a quarter are housebound or bedbound. Yet little research has been conducted into the condition. “This is exactly where the city steps in.
Where knowledge is lacking, research must begin. For us, health means both excellent research and care that reaches people,” the mayor said.
New researchers in a neglected field
The WWTF can act quickly and target funding where others have left gaps, explained WWTF President Michael Häupl. “ME/CFS was one such gap: many people affected, hardly any research, hardly any funding.” Seven exploratory projects in 2024 (€700,000) were followed by the establishment of an ME/CFS biobank at the Medical University of Vienna in 2025 (€200,000), six fellowships for early-career researchers in 2026 (€233,000), and now the two Consolidation Grants.
One goal from the outset was to ensure that ME/CFS would not be a scientific dead end for researchers. “We wanted to bring new people into this field. We have succeeded: before our first funding round, neither of the project leaders receiving grants had any connection to ME/CFS. Today, they and their teams are among the most active groups in Austria,” Häupl said.
The projects were selected by an international panel of experts. One notable first in the funding process was that researchers living with the illness, from the international Science4ME Forum, took part in the review as patient experts.
Philanthropic commitment rooted in personal experience
The WE&ME Foundation, established by the Ströck family, grew out of personal experience—two of the family’s adult sons have ME/CFS—and the realisation that patients and their families had few places to turn, little access to diagnostics, and little research that could change this, Gerhard Ströck explained. The family therefore decided to focus on basic research aimed at uncovering the disease’s central mechanisms while also taking the people affected seriously. “The WWTF brings something a foundation cannot provide on its own: experience with funding procedures, international peer review and transparent selection. For our donors, that means every euro goes to research that meets international standards,” Ströck said.
From a pilot project to a major undertaking
Lukas Haider of the Medical University of Vienna then described how an initial project grant developed into a long-term project. He originally worked in multiple sclerosis research. “ME/CFS still has no established biomarker and no causal treatment. Without targeted funding, no one enters this field, because there is no prior work to build on. The WWTF funded exactly that groundwork,” Haider said.
In the pilot project, his team found indications that, under controlled oxygen deprivation, the energy supply in the brains and muscles of ME/CFS patients fails, while healthy people are able to compensate. The new project, ME-RESET (Lukas Haider, Martin Krššák, Kathrin Kollndorfer; 36 months, €999,930), will determine exactly where this failure occurs, whether it is due to blood flow or the mitochondria, and whether it can be partially reversed by supplying oxygen. Patients will be examined in a randomised study using multiorgan MRI, MR spectroscopy and blood markers. The project focuses on a disease mechanism, not a finished treatment.
The second project (Matthias Wielscher, Kathryn Hoffmann; 36 months, €999,169) will investigate whether some people diagnosed with ME/CFS actually have a previously undetected rare genetic disease. The team will establish an Austrian cohort and study it using whole-genome sequencing. A new “ME/CFS Rare Disease Board” will assess the findings. The aim is to improve diagnostic precision.
The Medical University of Vienna as a central hub
“It is important to us to bring basic research together with relevance for patients. This requires an environment where clinical medicine and basic research work directly with one another. We have that here,” said Michaela Fritz, Vice-Rector for Research and Innovation at the Medical University of Vienna. Since September 2024, the Medical University of Vienna has also been home to the National Reference Centre for Post-Viral Syndromes, which provides information to healthcare professionals throughout Austria on behalf of the Ministry of Health. It is led by Eva Untersmayr-Elsenhuber and Kathryn Hoffmann.
About the projects:
From 2027: PAIS centre in Vienna
With the PAIS Centre, the Vienna Health Association is establishing a specialised point of contact for people with post-acute infection syndromes (PAIS), such as Post-COVID and ME/CFS. “Until now, people affected often had to actively search for doctors who knew about the condition. The centre will be Vienna’s first specialised point of contact. Initially, it will focus on diagnosis, symptom management and support,” said Michael Binder, Medical Director of the Vienna Health Association.
Care is due to begin in summer 2027 in an initial phase, with the centre becoming fully operational in its final phase from mid-2028. It will bring together medical care and therapeutic support based on current guidelines.
“Vienna is supporting important research and helping people affected here on the ground. With the PAIS Centre, research, expertise and care will come together at one location in Vienna,” Mayor Ludwig said in closing.
About ME/CFS
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a severe neuroimmunological multisystem disease that the WHO has classified as a neurological disease since 1969 (ICD G93.3). Its core symptom is post-exertional malaise (PEM): even minor physical or mental exertion can cause a significant worsening of a person’s condition, usually with a delay of 24 to 72 hours. Activation or exercise can worsen the illness; pacing—adjusting activity to manage available energy—is recommended. ME/CFS often develops after viral infections, including COVID-19. There is currently no causal treatment.
Media enquiries and contact
Bernhard Muttenthaler
Press Office of Mayor Ludwig
bernhard.muttenthaler@wien.gv.at
Tel.: +43 1 4000 81857
Therese Aigner
Press Relations, WWTF
therese.aigner@wwtf.at
Elena Reghenzani
Corporate Communications, Vienna Health Association
elena.reghenzani@gesundheitsverbund.at
Tel.: +43 1 404 09-60 543
Chandelier
Senior Member (Voting Rights)
From Twitter:
Christoph Ströck @cstroeckw
My parents are nearing 70—said with respect, not ageism. They continue to run our family business while facing health challenges of their own and the devastation ME/CFS has brought to half our family. Much of the next generation is prevented by the disease from sharing that responsibility.
Despite all that, today they are at two separate events in service of the cause: my father at Vienna City Hall with Mayor Michael Ludwig and WWTF President Michael Häupl, discussing research and care; my mother at CS Caritas Socialis’s first ME/CFS specialist conference at Schönbrunn.
Given everything they carry, the energy they devote to this cause is immense, almost worryingly so. I have enormous respect for their commitment and am deeply grateful.
wien.orf.at
Google Translate
Christoph Ströck @cstroeckw
My parents are nearing 70—said with respect, not ageism. They continue to run our family business while facing health challenges of their own and the devastation ME/CFS has brought to half our family. Much of the next generation is prevented by the disease from sharing that responsibility.
Despite all that, today they are at two separate events in service of the cause: my father at Vienna City Hall with Mayor Michael Ludwig and WWTF President Michael Häupl, discussing research and care; my mother at CS Caritas Socialis’s first ME/CFS specialist conference at Schönbrunn.
Given everything they carry, the energy they devote to this cause is immense, almost worryingly so. I have enormous respect for their commitment and am deeply grateful.
Ambulanz für postakute Infektionssyndrome
Ab 2027 soll in Wien ein neues Zentrum für Menschen mit postakuten Infektionssyndromen (PAIS) zur Verfügung stehen. Mit jeweils einer Million Euro werden zudem zwei Projekte zur ME/CFS-Forschung unterstützt.
wien.orf.at