German Government announces new funding guidelines for ME/CFS

Guideline for the funding of interdisciplinary collaborations for research into the pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Federal Gazette of 01.09.2023

https://www.bmbf.de/bmbf/shareddocs...2023/09/2023-09-01-Bekanntmachung-ME-CFS.html

The budgets allocated have been mentioned in an Email: https://twitter.com/user/status/1698740978834653368
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The research networks repeatedly called for by Scheibenbogen and Schieffer have a chance. Commercial enterprises are included in funding. Deadline is December 2023, so projects can start in the near future.

This funding is purely for ME/CFS research (budgets or plans for Long-Covid haven't been announced). Hopefully this will be sufficient to attract a few different high profile researchers working on collaborative projects over a sustained period of time.

 

I think it's fair to assume that Scheibenbogen will have shared these news with all her ME/CFS researching colleagues already. I hope it will also be able to reach far beyond the usual ME/CFS researchers. Something like a 40million grant in the hands of a new researcher that brings a new team with novel ideas and techniques from his field of research can certainly do a lot of good, maybe someone from MS or HIV research?

 

So 125M Euro? Wow.

 

From what I can tell it is more complex and the sum has the theoretical potential to be a lot higher. The sums mentioned are the upper limits per project. So hypothetically it would be possible to have 10 different projects on fundamental research all receiving 55 million Euros, the same applieds to the other funds. Of course there's probably hardly any researchers that have the means and knowledge to launch such big projects. Surely there would also have to be some sort of upper limit to all of the funding together, but they just haven't shared that. I wouldn't be suprised if the finance minister, Lindner, were to say that the upper limit is smaller due to budget cuts.

I think we'll just have to wait and see what happens.

EDIT - The total upper limit will be announced sometime this week. I suppose it has something to do with Federal Budget negotiations taking place this week in Germany. Overall, the news has been that most budgets, relevant to health and research, will be drastically lowered.

 

So it could be more than 125 million, but the exact amount depends on how much money to government allocates to research? Still, that's very impressive, if the money is well-spent. It's also noteworthy that they're explicitly saying it's for research into the pathophysiology of ME. If they keep that commitment, the odds of significant sums going to BPS researchers is low.

 

Yes, something along those lines. It could also be very possible that the sum ends up being smaller due to budget cuts (sort of how Lauterbach promised 200 million for healthcare research into Long-Covid, but that became 40 million because Lindner restriced the budgets and he couldn't make it possible anymore). We should know more by the end of the week. Long-Covid funding should also be announced then. Usually, I would assume that the budget for Long-Covid funding is larger than that for ME/CFS, but I wouldn't be suprised if a higher final budget for the one results in a lower budget for the other since the money is coming from the same pot.

 

Unfortunately, we have seen the limits of those commitments, and how political and skilled psychosomatic ideologues are at grabbing money, even when it's specifically marked as not going to them. Their only talent is grabbing more money, but they have honed that talent to a true expertise. The only expert thing they will ever do, ironically.

I'd say there is likely a 50% psychosomatic tax that should be considered on any amount, or just generally wasted as these things go, since basically no one has any actual expertise researching this competently and that we are currently in the golden age of psychosomatic ideology. Still, half of a large amount is much better than none of zero.

 

It's just nice to see efforts paying off. The influx of money in the past 5(?) or so years has been unprecedented. Now vigilance is needed to make sure it gets spent appropriatly.

I will say that one bugbear for me is that everyone seems to want to spend it in their own country. We've got the Hanson group and others that are so much further along than any Dutch scientist. But politics prohibits just funding them. I hope it won't be similar for Germany.

My hope is this sprouts a similar GWAS project to the one in the UK.

 

Yes. It's certainly a big problem that even if there was money I wouldn't know who to give it to in many countries. However, making funding country dependent is also very important to actually get new researchers into the field, something that has been a massive problem in ME/CFS research and this can then change the problem of not having researchers to give money to in the first place. The Netherlands won Jeroen den Dunnen and Rob Wüst as new ME/CFS researchers like that. That will probably have a bigger influence on the people in the Netherlands than if the money would go to the same people abroad over and over again.

I do believe the funding in Germany will only be available to researchers working or willing to relocate to Germany. I'm hoping that this can attract some new faces. I'm sure Scheibenbogen, Wirth, Behrends, Prusty, Prüß and Hohberger will get a fair share of the cake, but what I'm more looking forward to are new researchers that are better equipped, have young team members, bring in bigger teams and have some fresh ideas.

For further international collaborations EU funding should then be the next step.

 

I feel a bit ashamed that my country is right next to Germany and our government is putting exactly 0$ towards ME research. Our associations are absolutely terrible and do zero advocacy (they prefer self help meetings). They also worship doctors that claim 90% of ME patients reach remission spontaneously, prescribe rehab and refuse to diagnose or help with disability.

I tried to change things but I don't have any power. I'm happy that in Germany they are singing a different tune.

 

Hadn't looked at it that way tbh, but you're probably right. Would be great if we had an influx of new scientists working on ME/CFS.

 

If they want this money to deliver something, they need to move away from a grant model and build long-term foundations through an institute model that guarantees stable careers and a high level of cooperation, especially leveraging grad students, who typically do most of the research anyway.

The traditional model of granting money to some groups that work in complete isolation and have no future plans is a completely failure. It's what the RECOVER initiative did, and it's almost worthless. The foundations for an entire new discipline need to be laid out, so that PhDs know there is a future in it, with resources that are leveraged rather than maximally redundant. And emphasis on PhDs, not MDs. This is basic science, and MDs are rarely good at this stuff.

The usual approach gives money to some teams, sometimes they find something, but nothing is ever followed up. There needs to be a long-term vision. The AIDS model is the obvious one. Of course the funding was 100x larger than this so it's hard to follow through, but a lot of that money was spent on direct healthcare expenses and support. If the research was structured well enough, it would be possible to accomplish just as much. But it won't take 5 years, although I have no doubt that such a model would deliver results by then. There has to be a future for any of the basic research findings.

And they need to work with patients. Again, the damn AIDS model that was never repeated despite being pretty much the most successful research initiative in all of medicine. Sometimes I wonder if this isn't why it hasn't ever been repeated. Failed aristocratic silos seem to be preferred to succeeding out there with the populace.

 

The grant model seems severely flawed in general. A good way to secure more grants seems to be to provide positive results which is a surefire way to introduce bias. I've never gotten this about (medical) science. I agree that it seems much more logical to have money available year on year to simply do research. And then if that result nets results great, if it doesn't it also teaches us something.

 

The first reports by politicians are that the allocated funding by the German Government is 10 Million for Long-Covid research and 5 Million for ME/CFS research for the year 2024. Sounds extremely dissapointing.

 

If I understand it correctly, those are the planned spendings from BMBF (ministry of education and research) only. Additionally, they did announce 40 million in total for longcovid and ME/CFS research (20 million from BMG (health ministry) and 20 million from the GBA (federal joint committee). Though, I guess we have to wait until the general budget negotiations are over.

 

Yes, however the 40 million by Karl Lauterbach can only be used for health care research. So this budget is relatively useless if you don't spend money on biomedical research.

 

The entire system is geared toward encouraging fraud. You can't publish "negative" results in top journals. If you don't publish in good journals, you can't get grants or tenure.

 

Top journals need to start earmarking space for null result studies and for replications (successful or otherwise). It’s the only way this can start to be addressed.

I’d also like to see more space set aside for (peer reviewed) statistical reanalysis of data from studies previously published in the same journal. Journals need to become debating chambers again, not clearing houses for press releases.

 

Meh. The entire model is completely outdated. Journals aren't even needed, they add no value, and it's clear that the approach of peer review before publication doesn't work, plenty of invalid stuff makes it through and it's mostly treated as a "it's published, can't be any flaws in it, lalala can't hear you".

The whole academic model needs massive reform, to the point of throwing most of it out and rebuilding it from scratch. If this system were created today, it would definitely not be anything like the kludge that we have. It's elitist, totally lacks accountability and rewards failure.

All approved studies should be published in a non-mutable archive (blockchains are actually very applicable to this), even if they don't complete, show what you have after a set time limit. Then anyone should be able to pick it apart, no matter how long after publication in a similar approach to software (e.g. GitHub). Everything visible, all open source, all open data, and no way to just let issues hang indefinitely. And no censorship of valuable criticism, like we've seen with the JNNP whiny editorial. Or freaking Cochrane and their private club for influencers.

The academic publishing industry serves zero purpose. It's a legacy of a time when self-publishing was not possible, journals had to be physically printed and disseminated with a way to manage correspondence. Especially as it's only a couple years at most when AIs capable of far better reviews that are also faster and cheaper anyway. It's a legacy industry at this point, it only exists because it used to serve a purpose.

Physics has already somewhat moved on to this model with Arxiv, and yeah it has its issues but they have to be balanced with all the crap that comes from the current failed model and a wholly useless industry that subtracts value without adding anything.