Germany's "National Decade Against Post-Infectious Diseases"

[V.R.T.]

I can't think of a better way for Germany to spend the first lot of this funding than to put £20 million towards SequenceME. Is funding constrained to German projects? If not can people who are connected maybe make some introductions and get people talking?

The samples are already collected so funding a similar project in Germany makes less sense...

 

[rvallee]

I can't think of a better way for Germany to spend the first lot of this funding than to put £20 million towards SequenceME. Is funding constrained to German projects? If not can people who are connected maybe make some introductions and get people talking?

The samples are already collected so funding a similar project in Germany makes less sense...

IIRC it was even specifically mentioned that international outreach was necessary for this program to work since expertise is always so small that relying on whatever exists in any given country is almost pointless, even in a country the size and prosperity of Germany.

This is such a no-brainer that if this program were working well it would already be nearing approval. In a sane world.

 

[V.R.T.]

This is such a no-brainer that if this program were working well it would already be nearing approval. In a sane world.

I'd like to say perhaps it is but knowing our luck...

But it sounds like it's definitely somewhere Ponting and Co should try for funding. I'm sure they've thought of it so I won't tag him or anything. But it would give me a bit of faith in the world back if the German funders were smart enough to do this.

 

[OrganicChilli]

With a view to concrete implementation, the Federal Ministry of Research, Technology and Space is working at full speed on the conceptual aspects. We want to establish a close network between science, research, and industry and continuously expand it. At the beginning of the decade, the focus will be on establishing the scientific foundations. This includes, among other things: What biological mechanisms lead to the development of long-lasting symptoms from an infection? Which biomarkers or diagnostic parameters are suitable for differentiating between different disease courses or for better assessing the severity? Equally important is the development and strengthening of reliable clinical trial structures so that research results become more comparable and robust in the future. Questions of prevention are also coming into focus, such as which individual or immunological risk factors could promote the development of post-infectious diseases.

This strategic focus creates the scientific foundation upon which future therapeutic developments can build. For this reason, the initial research funding guidelines will not aim to promote individual therapies or specific drug candidates. This is not an exclusion of particular methodological or therapeutic ideas, but rather a necessary sequence: robust evidence first, followed by development perspectives.

Herr Oest, werden Sie sich im Forschungsausschuss aktiv für eine deutliche Erhöhung der ME/CFS-Forschungsgelder einsetzen – nicht nur mit Worten, sondern mit echter Hoffnung für uns Betroffene? | Frage an Florian Oest (CDU)

Diese Frage wurde Florian Oest (CDU) am 10.11.2025 auf abgeordnetenwatch.de gestellt. Lesen Sie hier die Antwort!

www.abgeordnetenwatch.de

The German X ME/CFS bubble is very upset about the lack of funding for clinical trials.

 

[Utsikt]

So they have already assessed all possible treatments and determined that none of them warrant a trial? Why not assess each application based on its merits instead of limiting it like this.

 

[V.R.T.]

Herr Oest, werden Sie sich im Forschungsausschuss aktiv für eine deutliche Erhöhung der ME/CFS-Forschungsgelder einsetzen – nicht nur mit Worten, sondern mit echter Hoffnung für uns Betroffene? | Frage an Florian Oest (CDU)

Diese Frage wurde Florian Oest (CDU) am 10.11.2025 auf abgeordnetenwatch.de gestellt. Lesen Sie hier die Antwort!

www.abgeordnetenwatch.de

The German X ME/CFS bubble is very upset about the lack of funding for clinical trials.

I don't know about this. Something like daratumumab working out could give a huge boost to the basic science. But that is already happening. I think there are a few things like T cell depletion that we are very close to being at the point where a therapeutic experiment is justified.

At the same time we have seen far too many trials fail and perhaps building a solid foundation is the way to do. Unless they piss it all away on viral persistance and GCPR antibodies and the idea that ME is 1000 different diseases.

Edit: as I said the other day, if they are serious about this they they should fund SequenceME.

 

[V.R.T.]

So they have already assessed all possible treatments and determined that none of them warrant a trial? Why not assess each application based on its merits instead of limiting it like this.

Agreed, I think this is an unnecessarily strict constraint.

 

[rvallee]

I saw grumblings on German bluesky this morning about the whole project being run in secret and the main pediatric team pushing hard for psychosomatic services, something about a particularly offensive screech from a psychotherapist on Instagram (which apparently was taken down).

As efforts grow to do something meaningful, opposition to them always grow more. This will truly get solved despite the worst efforts of the medical profession at blocking it.

 

[V.R.T.]

I saw grumblings on German bluesky this morning about the whole project being run in secret and the main pediatric team pushing hard for psychosomatic services, something about a particularly offensive screech from a psychotherapist on Instagram (which apparently was taken down).

As efforts grow to do something meaningful, opposition to them always grow more. This will truly get solved despite the worst efforts of the medical profession at blocking it.

As in the main pediatric team were complaining on bluesky beause they wanted psychatric services, or the project paediatric people wanted them?

 

[Yann04]

To be honest I’m glad most of the money won’t go to treatments just yet.

IMO if something like RECOVER spent anywhere near the amount they spent on clinical trials on large sample size well done basic bio research and replication the field would be further along.

I understand the concern of lack of patient involvement in choices though. (And the usual very founded worry that we’ll mostly get psychobabble.)

 

[EndME]

I understand the concern of lack of patient involvement in choices though. (And the usual very founded worry that we’ll mostly get psychobabble.)

The psychosomatic studies will happen one way or another, perhaps the more interesting question is: Will any good studies happen or will it all be the rehashing of old ideas?

 

[DHagen]

While there are many holes for many devils in the details, this actually sounds like the most responsible course of action to me. I understand the dismay - working from the foundations up is a long, long term project, while clinical trials could potentially produce results that just might help those suffering now... but dumping money into hopes that we already have something on hand that just might help a problem that we fundamentally don't understand is always going to be a huge gamble, and could well be a pit that it is impossible to fill.

 

[EndME]

While there are many holes for many devils in the details, this actually sounds like the most responsible course of action to me. I understand the dismay - working from the foundations up is a long, long term project, while clinical trials could potentially produce results that just might help those suffering now... but dumping money into hopes that we already have something on hand that just might help a problem that we fundamentally don't understand is always going to be a huge gamble, and could well be a pit that it is impossible to fill.

And I think it is rather unlikely that the trial approach would be helpful in recruiting new bright minds. It seems more likely to me that such an approach would just result in the testing of the same old stories that are probably not worthy of testing.

 

[bicentennial]

The German X ME/CFS bubble is very upset about the lack of funding for clinical trials.

Did this bubble discuss what they want trialled by who, and do they have an informed choice in the matter, or are they totally reliant on their favorite experts else strangers to spend the money on their behalf, if so it makes them desperadoes but at least they accept there is nothing much worth buying as is.

May they all have peace being seeded amongst them, adequate income top-ups accorded in this interim with housing costs also subsidised, clean air, good nutrition for the long haul, and a memorable perspective before and after each blitz.

 

[OrganicChilli]

Did this bubble discuss what they want trialled by who, and do they have an informed choice in the matter, or are they totally reliant on their favorite experts else strangers to spend the money on their behalf, if so it makes them desperadoes but at least they accept there is nothing much worth buying as is.

They've mentioned Mitodicure and drugs Scheibenbogen is planning to trial. One of them is Isatuximab. She has not yet revealed which other drugs her group wants to trial.

 

[V.R.T.]

They've mentioned Mitodicure and drugs Scheibenbogen is planning to trial. One of them is Isatuximab. She has not yet revealed which other drugs her group wants to trial.

I thought she already has pharma funding for isatuximab?

 

[OrganicChilli]

I thought she already has pharma funding for isatuximab?

Possibly. Isatuximab wasn't mentioned explicitly, only her group.

Edit: speak of the devil

This is being done, among other things, through funding for the "National Clinical Trial Group on Post-COVID-19 Syndrome and ME/CFS" (NKSG) at Charité – Universitätsmedizin Berlin. Here, clinical pilot studies are being conducted with already approved drugs and medical devices, whose efficacy in long/post-COVID-19 and ME/CFS is being tested. For example, a newly designed Phase II study on the efficacy and safety of the monoclonal antibody Uplizna will begin in 2026. The BMFTR is providing a total of up to €18 million for this work. Approval of funding for the second phase of the NKSG is expected in the first quarter of 2026.

Postinfektiöse Erkrankungen - BMFTR

Gegen postinfektiöse Erkrankungen wie Long COVID oder ME/CFS fehlen bislang wirksame Behandlungsmöglichkeiten. Die Nationale Dekade gegen Postinfektiöse Erkrankungen entschlüsselt Ursachen und Mechanismen und schafft Stück für Stück die Basis zur Entwicklung neuer Therapieoptionen.

www.bmftr.bund.de

 

[V.R.T.]

Possibly. Isatuximab wasn't mentioned explicitly, only her group.

Edit: speak of the devil

Postinfektiöse Erkrankungen - BMFTR

Gegen postinfektiöse Erkrankungen wie Long COVID oder ME/CFS fehlen bislang wirksame Behandlungsmöglichkeiten. Die Nationale Dekade gegen Postinfektiöse Erkrankungen entschlüsselt Ursachen und Mechanismen und schafft Stück für Stück die Basis zur Entwicklung neuer Therapieoptionen.

www.bmftr.bund.de

I'm not very optimistic for this trial in particular but this is very good news because the isatuximab trial was supposed to be a platform trial with a drug of this class so hopefully that will now go ahead as planned too!

It looks like uplinza it works on cd19 not cd20 like rituximab...

 

[V.R.T.]

From the Fatigatio live stream today: Carmen Scheibenbogen says they have secured funds to trial Isatuximab (she mentioned a CD38 depleting drug from Sanofi and there's only one).

She says Sanofi are interested in cooperating based on recent results.



At 2:47:00, but it's in German.

Edit: Updated video at 23:50

Apparently isa is funded too...

 

[V.R.T.]

From reading in the other thread it seems like she wants to do cd20 as well as cd19 and cd38 maybe? I mean at least we'll get some really concrete answers on that and put the rituximab debate to bed at last if they do that.