Maximizing German research potential with the National Decade against Postinfectious Diseases, the ME/CFS Research Foundation etc.

[justlxsa]

In this thread we could discuss ideas for maximizing research potential within Germany.
I think that Germany has the most money right now for ME/CFS research over the next years- and it should be spent right.

Moderation note: see also the related discussion the News from Germany thread, and our general thread on Germany's "National Decade Against Post-Infectious Diseases."

 

[justlxsa]

In this thread we could discuss ideas for maximizing research potential within Germany.
I think that Germany has the most money right now for ME/CFS research over the next years- and it should be spent right.

Some facts about the National Decade:

 

[mariovitali]

"Post Infectious Diseases". No further comment

 

[justlxsa]

"Post Infectious Diseases". No further comment

patient organization are currently fighting to include non infectious triggers as well.
Post-Infectious Diseases is the Name BMFTR wanted, so we can’t change that.

the Decade will focus on ME/CFS and LongCovid.

and the comment is not very helpful if we want to use the 500 Million better.

 

[Jonathan Edwards]

Do we know anything about genome sequencing (mentioned) in Germany?
That would be important to keep tabs on.

The rest looks like administrative robotspeak.

 

[Jonathan Edwards]

There should be a collaborative project that includes SequenceME and a complementary activity in Germany - budget €50M.

 

[justlxsa]

Level 3 project: Population-based study on post-acute infectious syndromes (PAIS) – German National Cohort (NAKO)

The German National Cohort (NAKO) makes it possible to record the prevalence of Long COVID and to extend this to the broader concept of post-acute infection syndrome (PAIS). PAIS can occur following infection with SARS-CoV-2 as well as following other viral infections. Unlike studies that only...

nako.de

It mentions the NAKO cohort, that’s the only link I found. but currently this project is only funded with about 2 million € and they plan to do a much bigger project, hopefully with ME/CFS too.

 

[Andy]

Do we know anything about genome sequencing (mentioned) in Germany?

2. Genetic Determinants of Post-Infectious ME/CFS: a 50-Family Study

Principal investigator: Prof. Dr. Nataliya Di Donato

Project location: Hannover Medical School (MHH)

Research area: Disease mechanisms

Summary: The project looks into families in which several members have been diagnosed with ME/CFS, aiming to identify genetic risk factors for ME/CFS. Identified families will undergo medical examinations, with their genetic information being analysed using state-of-the-art methods. The project aims to provide a better understanding of the biological causes of ME/CFS and to lay the foundations for improved diagnostics, biomarkers and targeted treatment.

More details about the project:

This project addresses an important gap in ME/CFS research by focusing on families in which several members are affected. Such familial clustering suggests that inherited genetic factors may contribute to disease susceptibility. The project will establish a deeply characterised cohort of 50 families with at least two affected members. Participants will undergo standardised clinical, neurological, and neuropsychological assessments, and severely affected individuals will be included through home visits. Blood samples will undergo state-of-the-art long-read whole-genome sequencing (WGS) to identify complex genetic variation, structural variants, repeat expansions, and DNA methylation patterns that may contribute to disease susceptibility. Additional biospecimens will be stored in the Hannover Unified Biobank to enable future studies of immune function and other molecular mechanisms. By combining comprehensive clinical phenotyping with advanced genomic technologies, the project aims to identify genetic susceptibility factors for post-infectious ME/CFS, improve disease stratification, and establish a sustainable resource for future research. Ultimately, the findings are expected to support the development of improved biomarkers, more precise diagnostics, and targeted therapeutic strategies.

Source

 

[Jonathan Edwards]

2. Genetic Determinants of Post-Infectious ME/CFS: a 50-Family Study

Oh good. That is exactly what we suggested doing a few years back. Good to see someone has picked up on the idea.

 

[Chandelier]

Do we know anything about genome sequencing (mentioned) in Germany?
That would be important to keep tabs on.

The rest looks like administrative robotspeak.

It's a long shot but maybe a viable contact?

I'm going through Dr Schilling's publication list on Google Scholar.
I'll add interesting papers to this post as I go.

Could she be the needed bridge to fund SequenceME?

Genome-wide association analyses of borderline personality disorder identify 11 loci and highlight shared risk with mental and somatic disorders, 2026, Streit et al

Abstract
Abstract Borderline personality disorder (BPD) is a severe mental health condition influenced by environmental risk factors (for example, interpersonal trauma) and genetic factors. We conducted the largest genome-wide association study (GWAS) meta-analysis of BPD so far, with a discovery sample of 12,339 cases and 1,041,717 controls, and a replication study of 685 cases and 107,750 controls (all participants of European ancestry). We identified 11 independent associated genomic loci and 9 risk genes in gene-based analyses. We observed a single-nucleotide polymorphism heritability of 17.3% and derived polygenic scores (PGS) that predicted 4.6% of the phenotypic variance in BPD on the liability scale. BPD showed the strongest positive genetic correlations with GWAS of post-traumatic stress disorder, depression, attention deficit hyperactivity disorder, antisocial behavior, and measures of suicide and self-harm. Phenome-wide analyses in Vanderbilt University Medical Center Biobank and UK Biobank using BPD-PGS confirmed these associations and also identified associations with other medical conditions, including obstructive pulmonary disease and diabetes. These analyses highlight BPD as a polygenic disorder, with the genetic risk showing substantial overlap with psychiatric and physical health conditions.

Web | DOI | PMC | PDF | Nature Genetics


Genome-wide association studies identify 77 loci for suicidality and provide novel biological insights, 2025, Colbert et al

Abstract
Suicidality contributes substantially to global morbidity and mortality, yet despite its heritability, its biological etiology remains largely elusive. We conducted multi-ancestry genome-wide association study meta-analyses of suicidal ideation (259,747 cases), suicide attempt (64,993 cases), suicide death (9,197 cases), and suicidal behavior (suicide attempt/ death, 75,300 cases), across 54 cohorts (e.g., the Psychiatric Genomics Consortium, Million Veteran Program, UK Biobank). We identified 77 significant loci across meta-analyses, including 59 previously unreported for suicidality. SNP-based heritability ranged from 2.0-6.7% and there were strong, yet incomplete, genetic correlations between suicidality phenotypes (0.70-0.88). Fine-mapping prioritized putative causal SNPs and 20 credible genes. Enrichment analyses implicated synaptic pathways and neuronal populations predominantly in subcortical brain regions (e.g., amygdala excitatory, medium spiny, hippocampal CA1-3). Together, these findings establish suicidality as a polygenic set of traits with both shared and distinct genetic influences, providing a foundation for future studies of suicide biology and etiology.

Web | DOI | PMC | PDF | medRxiv

 

[justlxsa]

Do we know anything about genome sequencing (mentioned) in Germany?
That would be important to keep tabs on.

The rest looks like administrative robotspeak.

Home - Genom-LC

there is also Genom- LC which collects 1000 blood samples from people with LC and LC- ME/CFS + a few post vac people.

 

[V.R.T.]

I do think with the emphasis on clinical trials and finding treatments it might be worthwhile trying to find a suitable German clinician-researcher who could conduct a robust study of campath.

We have been talking about the possibility of erroneous T cell signalling being an upstream cause of ME on here since before I joined five years ago. It is a hypothesis with a clear theraputic experiment available to determine its validity. And would be hard to get evidence for any other way. Whatever the answer, we would be narrowing the search area significantly. And if it is successful then we are already most of the way to a treatment!

Obviously there are risks with any serious drug and I'm not trying to minimse that but I think this is an important direction for research, and the funding atmosphere in Germany seems to be right for this kind of experiment.

 

[justlxsa]

I do think with the emphasis on clinical trials and finding treatments it might be worthwhile trying to find a suitable German clinician-researcher who could conduct a robust study of campath.

We have been talking about the possibility of erroneous T cell signalling being an upstream cause of ME on here since before I joined five years ago. It is a hypothesis with a clear theraputic experiment available to determine its validity. And would be hard to get evidence for any other way. Whatever the answer, we would be narrowing the search area significantly. And if it is successful then we are already most of the way to a treatment!

Obviously there are risks with any serious drug and I'm not trying to minimse that but I think this is an important direction for research, and the funding atmosphere in Germany seems to be right for this kind of experiment.

I know that a kids consortia applied to the treatment funding guideline which recently closed and they want to trial a rather serious drug so I guess it really could happen here- at least for adults.

But the next funding guidelines will probably focus on things like basic research and other things.

I‘m not sure when we can expect another funding guideline on phase || or phase ||| treatments.

 

[V.R.T.]

I know that a kids consortia applied to the treatment funding guideline which recently closed and they want to trial a rather serious drug so I guess it really could happen here- at least for adults.

But the next funding guidelines will probably focus on things like basic research and other things.

I‘m not sure when we can expect another funding guideline on phase || or phase ||| treatments.

I was envisaging a pilot trial or a small phase ii (ideal in some ways as you have the controls to compare the results to already and more confidence in them).

We almost certainly wouldn't want go straight to phase 3 for this, as we want to test it on a smallish group of well selected patients first. Mostly I welcome the focus on basic research but since this hypothesis would be very hard to get direct evidence for since afaik you can't usefully sample or image lymph or neural tissues for t cell behaviour, you're pretty much left with doing the theraputic experiment.