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

I have missed a shareable resource like Christoph Strock describes. Something that convincingly tells a complete story.
He‘s looking for someone to write a 5-page primer on ME/CFS in his latest Tweet (no account required):
Tangentially relevant, maybe: the idea of a ME/CFS primer was mentioned in the thread for the post below. The post also links to other threads that are kind of related.
I was too foggy today to put my thoughts into words so appreciate everyone here for putting it so well. I very much agree it would be really cool if the depth of interesting discussion on S4ME was easy to explore for newcomers.

Two threads discussing some related ideas are here:
An Introduction to Common Misunderstandings and Controversies for Newcomers
The FAQ Project - a collaborative FAQ of ME/CFS science
I have been building a sort of primer article myself (started from the opinion that the behaviour and ideas of my local psychosomatic merchants don't trigger alarms for a casual audience without the proper historical and scientific context), but it is months away from being shareable. Once I've progressed sufficiently, I hope to contribute to the linked threads.
 
He‘s looking for someone to write a 5-page primer on ME/CFS in his latest Tweet (no account required):

That would be easy enough and for me doesn't need any funding. (Although some petty cash for S4ME would not go amiss.)

I have now written half a dozen short pieces that might be almost this. I wrote something about 5-10 years ago that explained why I believed in ME/CFS, having previously not recognised it as a working doctor. I have written 'The Concept of ME/CFS' on Qeios. I have written most of a book, designed as a critique of PACE, that I never got together, which includes introductory chapters that probably cover much of what is suggested.

The general S4ME fact sheet isn't bad but I suppose a bit dry when it comes to things like neglect of funding?

5 pages would be maybe 2000 words. That shouldn't take long.

It might also cover the query today about blogs etc suitable for giving to carers and friends.
Edit: It was wingate asked for that and IC mentioned ME/CFS science blogs blogs which also contain lots of useful stuff.
 
That would be easy enough and for me doesn't need any funding. (Although some petty cash for S4ME would not go amiss.)
Wow, that would be great!
I wrote something about 5-10 years ago that explained why I believed in ME/CFS, having previously not recognised it as a working doctor.
Is it this piece?
I have written 'The Concept of ME/CFS' on Qeios
Highly recommended reading, that’s how I learned about S4ME:
 
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I think we may be able to work something out between Jonathan and others on S4ME and WE&ME. Discussions are underway.
Yay! :party:

From Christoph Ströck via Twitter:
Quick update: A small team from the Science4ME forum has kindly agreed to take on the project. They did not accept any payment, so I donated the €500 budgeted for the document to the Science4ME forum on behalf of WE&ME instead. The finished document will be open access and available to everyone alongside the other Science4ME fact sheets. Thank you!
 
From the forum committee:

Thanks to WE&ME and specifically Christoph Ströck for this initiative and their generosity. Thanks also to the forum drafting team for agreeing to put together a primer on ME/CFS for a general audience, based on existing fact sheets.

The WE&ME donation will be put towards the operating expenses of the forum.

The draft ME/CFS primer will be posted for comment on the forum before finalisation as a Science for ME Fact Sheet.
 
From the forum committee:

Thanks to WE&ME and specifically Christoph Ströck for this initiative and their generosity. Thanks also to the forum drafting team for agreeing to put together a primer on ME/CFS for a general audience, based on existing fact sheets.

The WE&ME donation will be put towards the operating expenses of the forum.

The draft ME/CFS primer will be posted for comment on the forum before finalisation as a Science for ME Fact Sheet.
Nice! Thank you to everyone involved, those organising things and those drafting the primer. WE&ME and S4ME moving things forward.
 
Christoph Ströck on Twitter | XCancel:


The DACH region [Germany, Austria, Switzerland] is becoming one of the main centers of gravity for ME/CFS research.​
Given Germany’s funding trajectory, institutional funding there is already surpassing that of the US and UK.​
How much of that ultimately translates into meaningful scientific output remains to be seen.​
Germany will inevitably dominate the region simply because of its size and resources.​
Austria, however, is on a strong trajectory of its own, with advantages in some areas and constraints in others.​
Switzerland is still lagging behind, but I am confident it will follow.​
Ideally, Swiss structures can learn from what has worked, and what has worked less well, in Germany and Austria rather than repeating the same learning curve.​
Institutional and private funding follow different incentives.​
Institutional money has to satisfy many constituencies, regional interests and constraints.​
Private funding should hedge against some of those incentives by making different bets, especially where concentration, cross-border coordination make sense.​
This matters particularly for infrastructure. Most of it will be institutionally funded, but private capital and expertise can help connect and scale (and hopefully in some cases hinder/redirect) it across DACH instead of building several small versions of the same thing.​
While basic, translational and clinical research depends on that infrastructure, the optimization logic for these domains is somewhat different: it's important to cooperate closely while diversifying hypotheses, and approaches.​
There is no such thing as an optimal strategy.​
You cannot truly optimize for something you understand so incompletely.​
But there are probably better and worse ways to optimize: use different funding mechanisms, incentives, portfolios and local strengths to complement and hedge against one another are some of the tools.​
Another opportunity is to pool more private funding across the region for international research allocation.​
This is where we already have a very strong allocation process at WE&ME, through the strong S4ME and WWTF partnership.​
I increasingly think most of my resources, and much more importantly of course WE&ME’s, should go towards strategy optimization: helping shape that broader strategy in the region rather than predominantly funding individual small-scale studies.​
Those studies and early investments remain absolutely necessary, but we need a better mix, with more resources going toward strategy and coordination.​
Of course, our contribution is still a drop in the ocean, but I think this is where our resources can have the greatest leverage.​
Globally speaking, DACH cannot substitute for much greater investment in the US and especially China.​

 
For sure, Austria is becoming a bit of a hot spot for good ME/CFS research, thanks in no small part to WE&ME.

Globally speaking, DACH cannot substitute for much greater investment in the US and especially China.
That's an interesting thought. I've watched Chinese cities get made incredibly fast. You can look out of your skyscraper window in the morning at a rice paddy, and by evening it has been turned into a park complete with large trees, a fountain and green grass.

There are people and resources and capability there, and a political system that can make amazing things happen in a coordinated way if someone with power wants it to happen. I think it was just yesterday I read a decent ME/CFS paper from China and thought to myself that there are some good researchers. I think conference organisers need to reach out to Chinese institutions, maybe Western universities can establish collaborations, maybe we can all do a bit more to bring Chinese researchers into the international ME/CFS research community.

Off-topic for the WE&ME thread, sorry, but building on Christoph's ideas about thinking strategically.
 
From WE&ME Foundation on Twitter | XCancel:

Five days left.

Stage 1 of WE&ME Projects closes on 25 August at 2:00 PM CET.

The call is open to research teams investigating the biological mechanisms of ME/CFS.
Around seven projects will be funded with €120,000 to €180,000 each over 18 to 24 months.
Teams new to ME/CFS research, including those from immunology, neuroscience or data science, are also welcome to apply.

Patient involvement is a core requirement.
Each project is expected to include patients as genuine partners, contributing beyond study participation.

Apply via the WWTF Funding Portal:
https://funding.weandmecfs.org/calls/
More on the call:


HQJ2eVpWgAEiw68.webp

 
I think conference organisers need to reach out to Chinese institutions, maybe Western universities can establish collaborations, maybe we can all do a bit more to bring Chinese researchers into the international ME/CFS research community.
It is an interesting idea. In the tech-sector, collaborations with Chinese researchers are increasingly hampered due to sanctions and restrictions. This affects mainly anything remotely "dual-use" as well as several Chinese universities that have, e.g., ties to the military.

I am not sure if the situation in medicine is similar, but I see the general trend going towards less collaboration unfortunately.
 
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