Austria: WE&ME Foundation
Benjamin Missbach
Established Member (Voting Rights)
Hi all, thanks for sharing the overview of our activities in Austria. It has been a busy couple of years. I’d be curious to hear your view: how do we compare with other initiatives that are more locally embedded? Any thoughts on this?
Jonathan Edwards
Senior Member (Voting Rights)
Way more ready to engage and discuss policy. Totally refreshing.
Benjamin Missbach
Established Member (Voting Rights)
thanks, @Jonathan Edwards. as you probably know, WWTF and WE&ME are both Vienna-based. We have been quite active in putting the right people on the table for the last three years in terms of stakeholder engagement + we have been developing our funding instruments / processes based on patients-first principles + WWTF is well connected to local research institutions. That's basically the mix that feels like something is moving fast and into the right direction
Chandelier
Senior Member (Voting Rights)
I'm very impressed by your work and I hope your initiatives will function as a blueprint for the German government on how to approach this undertaking the right way.
A big thank you to the family Ströck and everyone involved for working so hard on getting us out of our beds and back to life!
Last edited:
Benjamin Missbach
Established Member (Voting Rights)
Thanks @Chandelier - thanks, this is very encouraging. 50mio per year could be injected into the ME/CFS system in a very efficienct way. Anybody with knowledge here about how the money will be distributed?
Chandelier
Senior Member (Voting Rights)
See this Sitzung des Bundestages (subtitles attached to the post) for the latest news.
PRISM - Erweiterung der NUM-Datenbasis für die Forschung zu postinfektiösen Erkrankungen - BMFTR Gesundheitsforschung
PRISM does genome sequencing and RNA sequencing as well. (~3.000 patients from the NUM cohort). Not sure though if only Long Covid patients or ME/CFS patients as well.
I don’t know if you heard, but the next funding guideline from the Decade will focus on pathomechanisms. Dorothee Bär said it a bit strange but it could be 59 million€.
@justlxsa fyi
Probably the most impactful I have seen. I don't really have a comparison, it's pretty much in a class of its own, above the rest. There's always been a political angle to this, I'm very glad to see it being used effectively. It's just very hard to get any traction on this issue, so deeply unpopular.
Chandelier
Senior Member (Voting Rights)
Dr. Schilling ( @Claudia Schilling ) might be an interesting contact for you in that regard, Benjamin.
Benjamin Missbach
Established Member (Voting Rights)
how where the projects selected? were patients involved? what where the call specs?See this Sitzung des Bundestages (subtitles attached to the post) for the latest news.
PRISM - Erweiterung der NUM-Datenbasis für die Forschung zu postinfektiösen Erkrankungen - BMFTR Gesundheitsforschung
www.gesundheitsforschung-bmftr.de
PRISM does genome sequencing and RNA sequencing as well. (~3.000 patients from the NUM cohort). Not sure though if only Long Covid patients or ME/CFS patients as well.
I don’t know if you heard, but the next funding guideline from the Decade will focus on pathomechanisms. Dorothee Bär said it a bit strange but it could be 59 million€.
@justlxsa fyi
Benjamin Missbach
Established Member (Voting Rights)
Thanks @rvallee, that's very encouraging, we keep on grinding
Benjamin Missbach
Established Member (Voting Rights)
Thanks. @Claudia Schilling. Located in AUT?
What do you mean by initiatives that are more locally embedded?
Because when it comes to ME, what you’re doing on local level in Vienna seems quite unique, and there’s hardly anything that could be compared at all.
Last edited:
Utsikt
Senior Member (Voting Rights)
@Benjamin Missbach You’re miles ahead of the pack. There are still things that could be improved in the material like some questionable bits in the pages about pathology, but in terms of your impact it’s far beyond what could have reasonably been expected. It seems like you’ve got a good sense of direction, a willingness to listen and adapt, and there’s obviously an ability to make things happen.
Benjamin Missbach
Established Member (Voting Rights)
thanks @Silip! So most of the things we have done is well grounded in local networks (research; politics; stakeholders, etc). There might be another metropolitan region out there doing something similar that we do not know about, but might be interesting to learn from.
SugarSquared
Senior Member (Voting Rights)
Canada is not really the hotspot for ME/CFS research, but I can't think of anyone here doing something similar. We have provincial ME/CFS organizations, some associated with fibromyalgia, but they are definitely not locally embedded. I don't think they have the resources to do in-person fundraising events similar to what you do. Most focus on advocacy and not fundraising for research because that's all they can do.
I really appreciate what you are doing. The types of fundraising activities you do are what I associate with mainstream disease organizations. A gala/ball is the type of thing my parents have gone to many times because of my father is a businessman. It feels nice to know that somewhere, we are being treated similarly to other diseases.
I don't think there is, the few other initiatives that have had any kind of success with attracting funding for ME and/or lobbying for better care are almost all on national level and the successes are mostly isolated and limited to very specific areas; I believe your networking and long-term focus are quite unique.
As I’m from Switzerland and speak German, I follow what you’re doing very closely and with great interest. Generally speaking, I think what you’re doing in Vienna with WE&ME is absolutely exemplary, and – as others here have already mentioned – you’re miles ahead of anything else.
From an outsiders perspective you are also taking patients’ input very seriously, have a willingness to engage in dialogue, and an unwavering determination to make a difference.
Of course, you can’t compare it to something like the ‘Dekade’ in Germany, where there’s far more money available, but I think when you look by impact per ressources your probably by far the most impactful initiative for ME world-wide.
Greetings from Switzerland, keep up the good work
Benjamin Missbach
Established Member (Voting Rights)
@Silip - thanks a lot, highly appreciated. Speaking of the "Dekade": Any pointers on process, funding criteria, involved people, institutions?I don't think there is, the few other initiatives that have had any kind of success with attracting funding for ME and/or lobbying for better care are almost all on national level and the successes are mostly isolated and limited to very specific areas; I believe your networking and long-term focus are quite unique.
As I’m from Switzerland and speak German, I follow what you’re doing very closely and with great interest. Generally speaking, I think what you’re doing in Vienna with WE&ME is absolutely exemplary, and – as others here have already mentioned – you’re miles ahead of anything else.
From an outsiders perspective you are also taking patients’ input very seriously, have a willingness to engage in dialogue, and an unwavering determination to make a difference.
Of course, you can’t compare it to something like the ‘Dekade’ in Germany, where there’s far more money available, but I think when you look by impact per ressources your probably by far the most impactful initiative for ME world-wide.
Greetings from Switzerland, keep up the good work
So far there has only been one funding guideline. You’ll find the funding criteria on the internet if you google “Nationale Dekade gegen Postinfektiöse Erkrankungen Ausschreibung”.
Patient involvement is one of them. The problem is, that lower quality research consortia sometimes sought out “your local self help group” with no expertise in research whatsoever . Let’s hope they do not get funded. Better ones sought out organizations like the DG ME/CFS, Fatigatio or Long Covid Deutschland.
Matthias Hauer (Staatssekretär BMFTR) leads the steering committee of the Decade, afaik there are 13 people representing different organizations, one of them is the Deutsche Gesellschaft for ME/CFS.
NUM and Nako Gesundheitsstudie play a major role so far and both receive money too.
Last edited:
hotblack
Senior Member (Voting Rights)
You can probably see the general view of some other organisations from other posts in this subforum.
I’m not aware of any other org that has a presence or has got involved with S4ME like WE&ME/WWTF has. That could be said to bias views or could be viewed as an example of what is being done right.
@rvallee hits the nail on the head, seeing people use the tools they have effectively has been what I’ve found most impressive. Let’s be honest we don’t all have the resources or contacts. But knowing how to use them and doing so in the right way is a skill. I’ve seen some (well a few specific people) working on our behalf in the UK show similar skill but it’s the exception not the rule. As others have said most local organisations or even national ones don’t seem to have the vision or skillset. So I can’t think of any other organisation to point you towards to learn anything.
Only time will tell, things may change. I imagine there will continue to be different people with different demands, juggling that isnhard. And there may be things you do some of us here disagree with. Many of us are cautious as we’ve been burnt by organisations changing before. But here and now I am impressed and very hopeful for where things are heading.
I’m not aware of any other org that has a presence or has got involved with S4ME like WE&ME/WWTF has. That could be said to bias views or could be viewed as an example of what is being done right.
@rvallee hits the nail on the head, seeing people use the tools they have effectively has been what I’ve found most impressive. Let’s be honest we don’t all have the resources or contacts. But knowing how to use them and doing so in the right way is a skill. I’ve seen some (well a few specific people) working on our behalf in the UK show similar skill but it’s the exception not the rule. As others have said most local organisations or even national ones don’t seem to have the vision or skillset. So I can’t think of any other organisation to point you towards to learn anything.
Only time will tell, things may change. I imagine there will continue to be different people with different demands, juggling that isnhard. And there may be things you do some of us here disagree with. Many of us are cautious as we’ve been burnt by organisations changing before. But here and now I am impressed and very hopeful for where things are heading.