Austria: WE&ME Foundation (formerly TEMPI-Stiftung, TEMPI-Foundation)

"Our foundation supports nationally and internationally recognized research projects, non-profit organizations to support those affected and charity projects to combat diseases such as myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and related diseases.

"We can build on a network of long-term collaborations and personal contacts with leading physicians and researchers in Austria and abroad.

"The focus is on the sustainable creation of synergies, mutual recognition and support and promotion of progress with regard to research into these diseases. The foundation is therefore open to further cooperation and projects, insofar as this promotes the purpose of the foundation."


Website: https://www.tempi-stiftung.at/
Twitter: https://twitter.com/Tempi_Stiftung

 

https://twitter.com/user/status/1657771219997929474

 

Merged

Christoph Ströck, board member at TEMPI-Foundation, posted these tweets today:

1 - "I believe NOW is the time to lobby and advocate for higher research spending for #MECFS at Congress and NIH. To this end, I want to invest 100k USD - for anyone who comes up with a good idea on how to make the most of it, please reach out to Michael Ströck (@mstroeck on twitter) at TEMPI-Stiftung."

2 - "If we don't, as a community, come together, and surf the current small wave of more awareness and media coverage, we will go nowhere. #MECFS charities, big and small, need to unite and make this a common, maybe the prime goal of their advocacy work"

When someone asked about sending a direct message via twitter he said, "Please send an email to office@tempi-stiftung.at addressing Michael."

Screenshots:

 

From @MSEsperanza:

It seems they have a new name:

WE&ME Foundation

https://www.weandmecfs.org/

 

ME/CFS Biobank Austria – Establishment of the First Austrian Biobank for ME/CFS Patient Samples

"The first Austrian ME/CFS Biobank has been under construction at the Medical University of Vienna since September 1, 2023, with support from an initial grant provided by the WE&ME Foundation. The primary goal of a biobank is to collect samples and patient data for scientific research in a standardized manner, following the same established protocols. In this particular case, the collection of samples is being coordinated with ME/CFS biobanks in the United Kingdom, Germany, and the Netherlands. The storage of samples and data will take place in dedicated facilities at the Medical University of Vienna."

https://www.weandmecfs.org/research...t-austrian-biobank-for-me-cfs-patient-samples

 

"We are happy to announce the recipients of the 2023 Johadamis ME/CFS € 100.000 Research Grant for the project "UNRAVELING ME/CFS":
The Role of Hidden Viral Infections in Peripheral Blood and Gut-Specific Lymphatic Tissue in the Pathogenesis of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) a Controlled, Cross-Sectional Study.
...
The project, led by Dr. Max Augustin and Univ.-Prof. Dr. Alexander Zoufaly, involves collaboration with neurologist Dr. Michael Stingl and the 4th Medical Department of the Klinik Favoriten (headed by Univ.-Doz. Christoph Wenisch) as well as the Sigmund Freud Private University, to establish a biobank of professionally processed biomaterials (blood, intestinal mucosa biopsies) from ME/CFS patients and healthy control persons."

https://www.weandmecfs.org/research/johadamis-me-cfs-research-grant-2023

 

https://public-health.meduniwien.ac...ng/webinar-on-neurological-aspects-on-me/cfs/


International webinar on neurological aspects of ME/CFS
Date: 1st of March 2024

Time: 15.00 - 18.40 pm (CET)/ 9.00 – 12.40 am (ET)

Language: English

Highlighted by Michael Stingl on X-Twitter.

 

https://twitter.com/user/status/1787809734973587773

 

They're not playing around. This is high visibility with repetition, especially using the same imagery as from the video ad. This is smart advocacy.

 

This is going to sound horrible, but people in rich families getting ME/CFS can really change a lot for the average patient. As WE&ME shows, money, connections, and hard work can do wonders. I’m so grateful for their advocacy.

 

It would really only take one very wealthy family with the determination to solve this. That's all it would take and everything would change.

But that combination is too rare.

 

There's also the problem that the wealthy family member is more likely female and despite knowing their prior history during good health, the family may be persuaded by BPS-type arguments, where the illness is framed as a nervous breakdown due to the stresses of public and/or "high-flying" life.

So that rare combination may also require the wider family to be scientifically informed, sceptical of authority and willing to push against the status quo... which may be a problem given how the world works. I would be surprised if no multi-billionaire families have been affected by ME/CFS in some way. But we just need one.

This may be in play already, with people like Balvi funding Polybio.

 

There should be, very roughly of course, thousands of families worldwide with more than $50 MIO at their hands who have a close family member with ME/CFS or are themselves affected.

Also, this not just an issue of wealthy and superwealthy, while many ME/CFS patients are in precarious situations, one would expect more people of the middle class to donate to charities.

 

I think the problem is also that very wealthy people who get ME are likely to be diagnosed and told to rest very early on. Since they have the money to get very good medical care. This increases a lot the chances they will recover within the first few years or follow a very mild illness trajectory. This in turn decreases the chances the family thinks it worth investing large sums in ME research.