Austria: WE&ME Foundation

Benjamin Missbach said:
can you name three of the most assumptions/ theories still sticking around not grounded on robust science.
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This is from one of the principal UK charities, the ME Association, purporting to show where research has shown 'levels of dysfunction'.

Almost none of it has been confirmed, and the charity doesn't understand that even suggesting it's reliable science can cause harm to patients.

Here's the source, for info: https://meassociation.org.uk/information/what-is-mecfs/

Screenshot 2026-10-20 at 12.55.44.webp
 
From Twitter:

Christoph Ströck @cstroeckw
Remarkable things are happening on Science4ME.

As part of the process developed by @weandmecfs with Science4ME, researchers who have advanced to the second round of the WE&ME Projects Call are voluntarily presenting their proposals for discussion with forum members.

They’re testing their ideas against the knowledge, experience and questions of scientifically minded patients.

If you’re scientifically minded yourself, have expertise in research, methodology or a relevant field, or bring an informed patient perspective, consider joining. Your experience and questions could help strengthen ME/CFS research.

The forum is sometimes criticised as “negative” or “pedantic”. That’s hilarious, because people who question assumptions and scrutinise details are exactly those you should want to test your ideas with if your goal is scientific progress. It’s not a panacea, but it should certainly be part of the process.
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MSEsperanza said:
A huge thank you to Christoph Ströck.

To facilitate sharing, would be great to have a Bluesky and a Mastodon version of that message.
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Agreed!

Personally I prefer Mastodon (part of the Fediverse) because it's not owned by any corporation, has no advertising or data collection/tracking, and has some features that are missing on Bluesky.

But the audience is smaller, and there are groups on Bluesky that are not on Mastodon, so I also have a Bluesky account.

Many groups have stopped using X/twitter for a lot of different reasons:

www.bbc.com

X: Why are so many organisations leaving?

Many organisation have recently announced that they will no longer be posting on their X accounts.
www.bbc.com www.bbc.com
www.eff.org

EFF is Leaving X

After almost twenty years on the platform, EFF is logging off of X. This isn’t a decision we made lightly, but it might be overdue.
www.eff.org www.eff.org
 
Yann04 said:
I wanted to donate a tiny amount to thank them for the scientific/PPI direction they’re taking with the S4ME collaborations but I don’t see any field for a message on the donation portal? Am I missing something?
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I just tried and I’m stuck on the loading screen for processing the payment so I cancelled. There were no spaces for comments before that, but some offer the opportunity to add a comment only after the payment process is done. I don’t know if that’s the case here.
 
Latest newsletter (machine translated)

In November, we want to send a special signal for people with ME/CFS with “NovemberLight – Out of the Shadow” and at the same time further advance the urgently needed research.

This year, for the second time, the WE&ME Foundation is represented with its own booth at the ART&ANTIQUE in the Vienna Hofburg. From 12 to 16. November 2026 we offer 28 artworks for sale there, which were provided to us. The entire sale proceeds will benefit the WE&ME Foundation.

The focus is on works by Oskar Czerwenka, Friedrich Plahl and Hubert Scheibl. Under the guiding principle “From the shadow into the light” we would like to draw attention to the reality of life of people with difficulty with ME/CFS and at the same time convey hope.

Further information: https://www.artantique-hofburg.at/ausste.../weme-foundation/


Around the ART&ANTIQUE, two special events invite you to carry this idea forward together:

NovemberLight – About the invisible. About hope. About the light that remains.

Friday, 13. November 2026, 13:00

Vienna Hofburg, Rittersaal | ART&ANTIQUE

Under the title “NovemberLight – About the Invisible. About hope. About the light that remains.” combine art, music, literature and science. Among others, Prof. Julius Berger and Hyun-Jung Berger, Billi Thanner, Robert Bosisio and Prof. Dr. Lukas Haider with a scientific impulse.


NovemberLight – A Light of Hope in St. Stephen’s Cathedral

Saturday, 14. November 2026, 12:00

Vienna's St. Stephen's Cathedral

With a Holy Mass under the sign of hope and connectedness, NovemberLight is continued. Zelebrant is cathedral pastor Toni Faber, the musical design is taken over by Prof. Julius Berger and Hyun-Jung Berger.

  • Saturday, 14. November 2026, 12:00
  • Vienna's St. Stephen's Cathedral
  • Celebrant: Cathedral pastor Toni Faber
  • Musical design: Prof. Julius Berger and Hyun-Jung Berger
  • Livestream: Holy Mass “NovemberLight” https://www.youtube.com/live/aTj-QI-wdis
We would be very pleased to welcome you personally to ART&ANTIQUE or “NovemberLicht”. If you would like to visit ART&ANTIQUE, please contact us. We are happy to provide you with tickets.

Sincerely

Family Ströck
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Sign up to the newsletter here.
 
Christoph Ströck via X:


TL;DR: We’re developing WE&ME Frontiers, an ME/CFS research funding programme, with a first funding round focused on neuroscience tentatively planned for 2027. Extensive scoping and workshops with niche experts would shape the programme. We’re seeking major private funding, aiming to raise around €1 million for an initial flagship project, with scope to grow.​
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I initially suggested WE&ME Frontiers because I believe many existing funding structures struggle to accommodate ambitious, high-risk, high-reward projects combined with an extensive preparatory scoping phase. Private philanthropy can help develop these opportunities and bring additional funders on board.​
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Each iteration would focus on a defined area, beginning with neuroscience. Researchers, knowledgeable patients and funding experts would identify important unanswered questions, then bring in niche specialists working at the forefront of the relevant disciplines, including people who have never worked on ME/CFS.​
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Through detailed preparatory work and collaborative workshops, they would examine the evidence, assess feasibility and identify advanced or emerging methods that could help answer open questions. Compensation would be available for participants’ time and expertise.​
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The exact format remains open: the scoping phase could lead either to a sandpit, where participants develop projects together and selected teams are invited to submit funding proposals, or to workshops that shape a subsequent open call. In either case, funding decisions would involve independent assessment.​
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We want to collaborate with research organisations and institutional funders, pooling resources and expertise to support projects at a scale individual organisations might struggle to achieve.​
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We hope to attract new researchers, establish new methods and collaborations. The exact structure, scale and timing will depend on the partners we bring on board and the resources we can secure.​
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If you’re interested in funding or partnering on WE&ME Frontiers, please get in touch: contact@weandmecfs.org or directly with me at christoph.stroeckcfs@gmail.com.​

 
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