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

[Yann04]

From the start the 10 bn

I think recover was 1.15 billion (+ a 500 million addition in 2024).

 

[PageofME]

I think recover was 1.15 billion (+ a 500 million addition in 2024).

‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals - The Sick Times

In February 2021, the National Institutes of Health launched a new $1 billion initiative to study Long Covid, a chronic disease that has changed the lives of millions of Americans. Three years later, the NIH initiative, called RECOVER, has not met these goals, according to a detailed review of...

thesicktimes.org

Yes, thank you, it was 1 bn with which the RECOVER NIH Long Covid initiative started in February 2021 according to the article in The Sick Times above. But that doesn't change anything about the fact that politically it was part of Biden's economical stimulus package and not a genuine research programme. And I think that that's the cause why it is failing and continues to do so.

Because of the exorbitant privilege the US government can spend money way beyond their real income and make the rest of the world pay their debts via dollar inflation. American politicians are therefore used to waste money and don't care whether their investments actually bring any benefits.

Edit: I deleted my sarcastic comment about politicians. It was not necessary.

 

[Yann04]

I’m not sure I understand why the context of a general spending increase by the US Government being that of the Funding of the Recover Intitiative means it wasn’t a genuine research program.

I agree the funds were poorly allocated within the program and the impact was heavily underwhelming but I see that more as insitutional mismanagement than the program being “built to fail” so to say. I believe the people who pushed and funded the program genuinely hoped it would find a solution.

 

[PageofME]

I’m not sure I understand why the context of a general spending increase by the US Government being that of the Funding of the Recover Intitiative means it wasn’t a genuine research program.

I agree the funds were poorly allocated within the program and the impact was heavily underwhelming but I see that more as insitutional mismanagement than the program being “built to fail” so to say. I believe the people who pushed and funded the program genuinely hoped it would find a solution.

I think that back in 2021 there weren't any genuine PAIS and ME/CFS researchers at the NIH altogether. Hence, that billion went to researchers who lacked the capacity to design studies of quality in these fields altogether. And that hasn't really changed ever since, I believe.

But who knows whether these researchers even ran studies in the field of Long Covid. I could imagine that they wrote proposals to RECOVER for new furniture, travel expenses, and expensive wines (I have worked at the biggest state run university in Switzerland, the Federal Institute of Technology in Zurich, myself. I have therefore gained some insights in how these things work).

The managers of the programme would have granted all of these requests because their task was not to guarantee research quality but to make sure that that billion was spent completely within one year just as Washington had adviced them.

 

[Utsikt]

But that doesn't change anything about the fact that politically it was part of Biden's economical stimulus package and not a genuine research programme. And I think that that's the cause why it is failing and continues to do so.

How exactly is spending a billion paying researchers going to stimulate the economy? Paying for research seems like the least efficient way to stimulate the economy.

You give money to e.g. build infrastructure if you think creating jobs for the average person is going to help, and you give it to businesses if you believe in trickle down economics.

It’s very normal to tack together all kinds of initiative in US politics. So even if RECOVER might have been passed together with stimuli initiatives, that doesn’t make it a stimuli initiative as well. It was just the cost of getting everyone to agree on the total package (if that’s even what happened, I have no idea about the details).

 

[PageofME]

You give money to e.g. build infrastructure if you think creating jobs for the average person is going to help

It's the same principle if you invest in research. The idea is to put more money into people's pockets to raise consumption.

 

[Utsikt]

It's the same principle if you invest in research. The idea is to put more money into people's pockets to raise consumption.

I’m well aware of the intentions, I’m an economist. Spending money on medical researchers, especially research by government employees, will provide abysmal bang for your buck if your aim is to get more money into the hands of people that will spend it.

 

[PageofME]

I’m well aware of the intentions, I’m an economist. Spending money on medical researchers, especially research by government employees, will provide abysmal bang for your buck if your aim is to get more money into the hands of people that will spend it.

I was explaining why in my view RECOVER doesn't work even when it is the best funded research programme there is. And I think I have a point.

 

[Utsikt]

I was explaining why in my view RECOVER doesn't work even when it is the best funded research programme there is. And I think I have a point.

I think we both agree that RECOVER was led by people that don’t know what they were doing. But I primarily see that as a failure by the institutions that were in charge, and of academia as a whole.

I fear the same will happen with this programme, and lots of money will no doubt be wasted on bio- and BPS-babble even if it produces some good research as well.

 

[bicentennial]

I read/skim each monthly RECOVER report and I'm still asking the very same question. I have no idea what this program is doing, if anything at all. They communicate a lot but it's promotional, not informational.

"promotional, not informational" - this systemic dissonance is sinking governments while soaking up government subsidy - not what it says on the tin

So buyer beware

The managers of the programme would have granted all of these requests because their task was not to guarantee research quality but to make sure that that billion was spent completely within one year just as Washington had adviced them.

So this German program would rely on effective management at the level of authorisation, with a rigorous criteria - for each project and every bit of spend - which criteria requires effective, experienced expertise IF the government does not want to be side-lined or embarrassed.

Maybe - if informed - that investigative journalist on Chemical Engineering News (CEN) will decide to stay on this matter in this case: Rowan Walrath who wrote about RECOVER as linked in passing by @DHagen here (on page 1):

My understanding is that most if not all of the initial fund is already gone and obviously did not deliver much.... ...

... ... In 2024, the NIH allocated an additional $662 million for Long Covid to be dispersed from 2025-9 (https://recovercovid.org/funding). I do not think anyone knows the current status of that money. Many of the projects already promised funding were cancelled, then some reinstated, though I am not sure if anyone has actually received anything.

From back in March:
https://cen.acs.org/policy/research-funding/NIH-cancels-RECOVER-grants-long/103/web/2025/03

Below is an example of her relevant reporting, as relevant in Germany too, since - according to some researchers - the funding needs to be properly allocated and spent, also secured in the long-term against clawback or regime change, and the patho-physiology understood:

NIH cancels RECOVER grants for long CIVID projects (March 2025)

Pathobiology studies like Warburton’s are the key to understanding how long COVID operates.

While other research has offered clues into the disease’s mechanisms, scientists have yet to uncover a concrete biomarker that could be the basis for a diagnostic test or for drug discovery and development.

Most pharmaceutical companies have shied away from attempting to develop treatments for long COVID because they don’t have a clear target yet.

If findings from the RECOVER-funded pathobiology studies go unpublished, Fitzgerald worries it could kneecap future efforts to treat the disease.

“These are the studies that were going to tell researchers, tell clinicians worldwide, this is what long COVID looks like in the human body,” Fitzgerald says.

“These are the areas we need to focus on in order to treat it. This work is incredibly important. It’s a predecessor to clinical trials. It’s a predecessor to drug development.”.... ....

... ... The AViDD Centers were designed as 5-year projects, meaning that the final 2 years of funding would come later, but when Congress took back unspent COVID-19 pandemic relief funds, that last round of funding never materialized. Instead, NIAID provided a 1-year, no-cost extension.
“Most AViDD Centers have unused funds that they had been told by NIH could be carried over for another year,” says Michael Z. Lin, a neurobiologist and bioengineer at Stanford University and a researcher at the AViDD Center housed there.

“It always takes several months to hire people and set up experimental systems, purchase all the equipment and reagents, so almost all grants are underspent in the first year.”

Articles by Rowan Walrath:

10 Start-Ups Pharmaceuticals

How PostEra designs drugs from code

 

[OrganicChilli]

Expert statements for a public discussion in the Bundestag.

I can't translate all of it, but it's a lot of biobabble (the need for precision medicine based on individual genes, endothelial disfunction, mitochondrial damage, neuroinflammation, MCAS, BC007 being a useful drug for responders), and a few good points as well: ME/CFS is PEM and not fatigue, the term LC is too broad and must not be conflated with ME/CFS, focus on biomedical research instead of BPS.

Deutscher Bundestag - Öff. Fachgespräch 'Nationale Dekade gegen Postinfektiöse Erkrankungen'

www.bundestag.de

I didn't take extensive notes at all. These are just things that stood out to me and that I remember. If anyone wants to add anything or thinks it would be beneficial to summarise the discussion with AI, please feel free to do so.

Scheibenbogen: Sanofi are interested in supporting trials and potentially in getting involved in further ME/CFS research. She's also talking to two other pharma companies and suggested inviting them to further discussions. Hard push back on post-vac (which is a popular and - excuse my French - brain dead talking point in right wing circles). Emphasised that more than enough BPS research has been conducted and should no longer be funded. Clinical trials and basic research must be conducted in parallel.

Steinacker: lots and lots of biobabble on endothelial disfunction, mitochondrial disfunction and inflammation. Advocates for precision medicine. I think it's very unfortunate he's invited as expert. His background is in sports medicine and cardiology.

Hohberger: we already know about different post-COVID subgroups (do we???). Now we need treatments for each subgroup. (she's responsible for the BC007 trial at the University of Erlangen. Iirc findings were overstated, but I haven't checked the thread).

Schulze: post-infectious diseases are highly heterogeneous. Symptoms can be similar, but molecular biology is likely different across patients. Thinks we need multiple biomarkers to classify all sorts of subgroups. One size fits all treatments won't work.

Heydecke: patient care is insufficient, especially in rural areas, but this should be handled separately from the PAIS decade.

 

[V.R.T.]

Scheibenbogen: Sanofi are interested in supporting trials and potentially in getting involved in further ME/CFS research. She's also talking to two other pharma companies and suggested inviting them to further discussions.

This is great news!

Hohberger: we already know about different post-COVID subgroups (do we???). Now we need treatments for each subgroup.

Schulze: post-infectious diseases are highly heterogeneous. Symptoms can be similar, but molecular biology is likely different across patients. Thinks we need multiple biomarkers to classify all sorts of subgroups. One size fits all treatments won't work.

This imo is one of the most pernicious examples of biobabble. Why is it being blindly accepted before we have any idea if it's true? It could be, but it could be that ME/CFS is mostly one disease with the same pathway requiring the same treatment. Or two. This idea stems from people who claim all treatments work just for subsets of patients.

I think its quite unlikely there are many different illnesses that all cause PEM and are all currently undetectable, personally.

 

[OrganicChilli]

This is great news!



This imo is one of the most pernicious examples of biobabble. Why is it being blindly accepted before we have any idea if it's true? It could be, but it could be that ME/CFS is mostly one disease with the same pathway requiring the same treatment. Or two. This idea stems from people who claim all treatments work just for subsets of patients.

I think its quite unlikely there are many different illnesses that all cause PEM and are all currently undetectable, personally.

E.L.I.S.A., E.R.D.E. and all sorts of very specific auto-antibody and spike protein tests have a chokehold on German LC/ME/CFS researchers and patients.

 

[rvallee]

Emphasised that more than enough BPS research has been conducted and should no longer be funded.

I think this is probably the best argument we have. They have circled everything 100x over, there hasn't been any original biopsychosocial research. We keep hearing how they need to do more research, but they never actually do more research, they just do the same thing again and again. Glad to see her make this point.

I look at every single BPS study in the last two decades and I cannot find a single reason for any of them. They add nothing, it's all been done before. The very latest studies say all the same things as the first ones. It only shows the strength of beliefs in psychosomatic ideology that no one is bothered by that, will even pretend that this copy-paste junk is 'novel', or whatever.

 

[Yann04]

excuse my French - brain dead talking point in right wing circles

I had to look up what “excuse my french” meant was very confused

 

[Chandelier]

I didn't take extensive notes at all. These are just things that stood out to me and that I remember. If anyone wants to add anything or thinks it would be beneficial to summarise the discussion with AI, please feel free to do so.

Scheibenbogen: Sanofi are interested in supporting trials and potentially in getting involved in further ME/CFS research. She's also talking to two other pharma companies and suggested inviting them to further discussions. Hard push back on post-vac (which is a popular and - excuse my French - brain dead talking point in right wing circles). Emphasised that more than enough BPS research has been conducted and should no longer be funded. Clinical trials and basic research must be conducted in parallel.

Steinacker: lots and lots of biobabble on endothelial disfunction, mitochondrial disfunction and inflammation. Advocates for precision medicine. I think it's very unfortunate he's invited as expert. His background is in sports medicine and cardiology.

Hohberger: we already know about different post-COVID subgroups (do we???). Now we need treatments for each subgroup. (she's responsible for the BC007 trial at the University of Erlangen. Iirc findings were overstated, but I haven't checked the thread).

Schulze: post-infectious diseases are highly heterogeneous. Symptoms can be similar, but molecular biology is likely different across patients. Thinks we need multiple biomarkers to classify all sorts of subgroups. One size fits all treatments won't work.

Heydecke: patient care is insufficient, especially in rural areas, but this should be handled separately from the PAIS decade.

Fatigatio.de created an extensive summary:

Long Covid & ME/CFS: Fachgespräch im Bundestag zur Nationale Dekade gegen Postinfektiöse Erkrankungen

Am 17.12.2025 diskutierte der Deutsche Bundestag die Nationale Dekade gegen Postinfektiöse Erkrankungen. Experten betonten die Bedeutung von biomedizinischer Forschung für ME/CFS, Long Covid und andere postakute Infektionssyndrome.

www.fatigatio.de

Translation:

Summary of the Expert Hearing on the “National Decade Against Post-Infectious Diseases” in the German Bundestag

17 December 2025 | 07 Fatigatio e.V. News

On 17 December 2025, a public expert hearing on the planned “National Decade Against Post-Infectious Diseases” was held in the Committee on Research and Technology of the German Bundestag. All participating experts assessed the event as a historic opportunity to finally address conditions such as ME/CFS, Long Covid, and other post-acute infection syndromes (PAIS) in a systematic manner.

In Germany, at least 1.5 million people are affected, many of them severely ill, permanently unable to work, and so far without effective therapeutic options. For these individuals, the “National Decade Against Post-Infectious Diseases” is not merely a research project—it was described by all experts as a historic opportunity.

In preparation for the event, Fatigatio e.V. had coordinated substantively with several of the individuals involved.

A central consensus among the invited experts—including representatives from Charité Berlin, the University of Bonn, the University of Ulm, Erlangen Eye Clinic, and the ME/CFS Research Foundation—was the clear classification of post-infectious diseases as organic, biomedical multisystem disorders. They are explicitly not primarily psychosomatic conditions. Decades of psychologization have massively hindered research, diagnostics, and care, costing valuable time. Accordingly, it was demanded that the National Decade consistently focus on mechanistic research, biomarker development, improved diagnostics, and the development of effective therapies, rather than concentrating predominantly on health services research or purely observational studies.

Several experts, particularly Jörg Heydecke of the ME/CFS Research Foundation, called for a significantly higher pace and a stronger focus on solutions. In view of the enormous individual suffering and the high macroeconomic costs, further delays were deemed unacceptable. Germany must also learn from international missteps, such as large-scale cohort studies without meaningful therapeutic progress. Instead, a parallel approach was advocated: basic research, biomarker development, and clinical therapeutic research should be advanced simultaneously. Early experimental studies with smaller, well-characterized patient groups, as well as a central, coordinated study platform, were identified as crucial.

Another major focus of the hearing was the role of biomarkers. All experts emphasized the pronounced heterogeneity of post-infectious diseases and the failure of “one-size-fits-all” approaches. The key to success lies in the development and validation of biomarkers and biosignatures for clearly defined subgroups. These must be closely linked to therapeutic approaches so that changes under treatment can serve as evidence of biological relevance. The goal is to establish personalized, evidence-based treatment pathways. PD Dr. Bettina Hohberger illustrated this using the comparison with the HbA1c value in diabetes: only the linkage of biomarker and therapy enables real breakthroughs.

From a scientific perspective, early and systematic therapeutic research was also called for. This includes, in particular, the targeted repurposing of already approved drugs, the promotion of new active substances with a clear biological rationale, and the combination of drug studies with omics and biomarker analyses. Prof. Carmen Scheibenbogen reported initial therapeutic effects, for example in connection with autoantibodies or hyperbaric oxygen therapy. At the same time, she made clear that genuine interest from the pharmaceutical industry only arises once robust biological data are available. In this context, she confirmed concrete engagement by Sanofi in ME/CFS studies as well as ongoing discussions with other companies.

There was also unanimous warning that the mere establishment of structures, cohorts, and data collections is insufficient. Funding should be awarded exclusively to centers and consortia with proven expertise. To ensure quality and independence, the use of international reviewers not based in Germany was recommended. In addition, long-term, cross-disease data and research platforms are needed instead of short-lived individual projects.

Early, binding, and structural involvement of patients was highlighted as a key success factor. Patient organizations should not be involved merely symbolically but in concrete ways—for example, in steering committees, in shaping funding guidelines, in proposal evaluations, and as cooperation partners in research projects. This was regarded by all sides as a prerequisite for relevant and practice-oriented research.

At the same time, the experts identified clear shortcomings in the current approach. The funds currently earmarked for biomedical research—approximately €20 million for biomarker development and €30 million for therapeutic research over five years—were assessed as insufficient. Further demands included a consistent departure from purely psychosocial explanatory models, the nationwide transfer of successful studies into standard care, the systematic inclusion of children and adolescents, and long-term planning security beyond individual funding periods.

In the second part of the hearing, the focus increasingly shifted to political implementation. Members of parliament from various parties asked about the concrete translation of research results into therapies, about prioritization, and about political responsibility. The scientific community described a model of “paternoster research,” in which clinical observations are fed back into the laboratory and the insights gained there are then tested clinically again. Money alone is not sufficient for this; decisive leverage effects are required. Public funding must be designed in such a way that it attracts the pharmaceutical industry while remaining clearly clinically and scientifically led. In particular, early Phase II studies cannot be carried out by universities without state support.

The issue of patient involvement was also discussed in a differentiated manner. There was broad agreement that patient organizations are indispensable, but that their involvement must be clearly structured. Not every initiative brings the same level of medical-scientific expertise. Politics should therefore distinguish between political advocacy and technical collaboration and selectively involve those organizations that can make a substantive contribution to research. At the same time, patient representatives signaled their willingness to professionalize and their desire for clearly defined participation formats.

In response to questions about realistic next research steps, the experts made clear that Germany already has identified biomarkers and biosignatures. The next essential step is smaller, well-designed Phase II therapeutic trials with approximately 50 to 100 patients in clearly defined subgroups. Large, unselected cohorts are not required for this. What is currently lacking above all are funding, suitable study infrastructure, and sufficiently qualified personnel.

Another point of discussion was the distinction between Post-Vac, Long Covid, and ME/CFS. While Post-Vac, according to Dr. Hohberger, must be regarded as a separate entity and investigated scientifically, Prof. Schultze assessed that Post-Vac syndrome is not a post-infectious disease and therefore does not belong in the National Decade. At the same time, Prof. Scheibenbogen made it clear that Long Covid and ME/CFS already occurred in identical form before vaccines were available. Large studies also show that vaccinations reduce the risk of Long Covid by around 50 percent, and that boosters further reduce this risk. Long Covid is not a vaccine complication.

Regarding questions about risk groups, it was explained that women in particular, as well as people with a genetic predisposition, carry an increased risk. Genetic studies such as DecodeME point to the involvement of genes from the fields of immunology, neurology, and mitochondrial function. Certain pre-existing conditions can also increase the risk.

Several members of parliament specifically asked about possible long-term consequences of COVID-19 for the brain. Prof. Schultze referred to indications of structural brain changes as well as neurovascular and immunological damage. Historical parallels, such as the Spanish flu, suggest delayed waves of dementia following pandemics. International studies indicate that a proportion of dementia cases could be post-infectiously triggered. At the same time, vaccinations—for example against herpes zoster—show a reduction in dementia risk, which points to viral involvement. While there is no automatism, the risk is increased and the need for research correspondingly urgent.

Finally, the role of the pharmaceutical industry was addressed. Prof. Scheibenbogen explained that the industry had held back for decades due to a lack of biological clarity and medical consensus. The National Decade now sends a strong political signal. Concrete effects are already visible, including the engagement of Sanofi and further ongoing discussions. Targeted dialogue formats between politics, science, and industry were proposed.

All of these contributions result in a clear political mandate for action. Policymakers are called upon to explicitly prioritize biomedical research, define clear funding criteria, ensure international peer review, promote translation in a binding manner, actively enable cooperation with the pharmaceutical industry, structurally involve patient representatives, and consider the care perspective from the outset.

The overall conclusion of the event was unequivocal: the scientific evidence is more advanced than is often assumed. Those affected are not waiting for new insights, but for their implementation. Germany has excellent researchers, initial therapeutic approaches, and growing international interest. What has been lacking so far are political clarity, sufficient and purposefully deployed resources, and binding structures. The “National Decade Against Post-Infectious Diseases” was described by all experts as a historic opportunity. Whether it will indeed become a turning point depends decisively on whether policymakers, scientists, patients, and industry now act consistently, in a coordinated manner, and with a focus on solutions.

The list of experts, individual statements by the experts and other participants, as well as the agenda can be found here: bundestag.de

 

[rvallee]

I just can't bring myself to have any hope, I have learned that lesson the hard way, but most of this looks good. Some overstatement over already-identified biomarker, and really missing the point about vaccines causing the same chronic illnesses but not being part of it, as it's actually a very significant part of the puzzle that points to an immune response, rather than anything specific to a pathogen. It could lead to a lot of missed opportunities. This is clearly a political decision to avoid having increasing vaccine hesitancy, and it completely misses the point that being deceitful has long been a major factor in it. Tell the truth, the whole damn truth, and nothing but the freaking damn truth.

It's not perfect by any stretch, but this is more substantial and meaningful than almost all the work done so far by medical professionals, combined. Of course this is only possible because of work done by professionals, but so little of it has been of any value, and at least there is a coherent message that I can see about how this is feasible, but it will need to be done right and involve the right people, as it's doing the opposite of this that has caused this giant failure.

One thing for sure this will require stubborn leadership from people with the right priorities, because it will be met adversarially by most of the medical institutions and medical leaders. Doing the right thing is always hard precisely because it's so unpopular.

 

[Utsikt]

Further demands included a consistent departure from purely psychosocial explanatory models,

It’s great to see what are clearly steps in the right direction, but why is it so freaking hard to just shut the door completely on this nonsense?

It’s like saying that we’re noe moving away from child care models using purely physical punishment. Can’t they see how wrong that is - that some is still allowed?

And it’s not like the BPS crowd are already lying about how their BPS model definitively involves some B, so they will fit right in.