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

I am a layperson when it comes to science, but it seems obvious to me that a tissue biobank built from samples collected from ME/CFS patients after euthanasia is more than necessary.

I even have the feeling that some of the answers may come from there. For a disease that is so difficult to investigate in living patients, being able to directly study different tissues (especially from severe and very severe patients) seems absolutely essential to me.

On the other hand, I am surprised, and a little disappointed, to see that Blog ME/CFS appears to be calling for a replication of DecodEM. I fully understand the need to confirm scientific findings, but a full replication could mean another three, perhaps even five years.

Is it really necessary to wait for a complete replication before making use of the leads already emerging from DecodEM and launching complementary studies?

I also do not know exactly when the samples used in DecodEM were collected, but since then some patients have probably had one or more additional Covid infections, which makes comparisons even more complicated.
 
About Helena Radbruchs work:

„Yet another component of their work covers postmortem analysis of brain stem tissue. Donors were not ME/CFS patients but individual who deceased following SARS-CoV-2 infection, including patients with neurodegenerative disease.
Importantly, no virus was detectable in the brain.
Alterations that were identifiable concerned the endothelial and microglial cells, again pointing to changes in the innate immune system. While the group is also looking at, and still learning about, serotonin in connection with brain stem tissue and different anatomical regions of the brain, they also recently investigated muscle tissue obtained via biopsies from ME/CFS patients enrolled in the VADYS-ME study. Applying a deep learning model, they analysed fibre size distribution in the muscle. Investigations still on the horizon for SERIMM will look at different cell types by single nuclei RNA sequencing.“

She could be interested in doing ME/CFS brain tissue analyses but we would need infrastructure for that. I am not sure if you can already donate your body to research in Germany, does anyone know more?
 
justlxsa said:
About Helena Radbruchs work:

„Yet another component of their work covers postmortem analysis of brain stem tissue. Donors were not ME/CFS patients but individual who deceased following SARS-CoV-2 infection, including patients with neurodegenerative disease.
Importantly, no virus was detectable in the brain.
Alterations that were identifiable concerned the endothelial and microglial cells, again pointing to changes in the innate immune system. While the group is also looking at, and still learning about, serotonin in connection with brain stem tissue and different anatomical regions of the brain, they also recently investigated muscle tissue obtained via biopsies from ME/CFS patients enrolled in the VADYS-ME study. Applying a deep learning model, they analysed fibre size distribution in the muscle. Investigations still on the horizon for SERIMM will look at different cell types by single nuclei RNA sequencing.“

She could be interested in doing ME/CFS brain tissue analyses but we would need infrastructure for that. I am not sure if you can already donate your body to research in Germany, does anyone know more?
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Source of that quote:


Overview of upcoming SERIMM studies:
Dolphin said:
https://www.gesundheitsforschung-bmbf.de/de/serimm-serotonin-und-immunmodulation-in-me-cfs-18014.php

SERIMM - Serotonin and Immunomodulation in ME/CFS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe neuroimmunological disease that often leads to a high degree of physical and mental disability. Its cause and development are still largely unknown. Therefore, the options for clinical treatment of patients are limited. There are large gaps in knowledge because hardly any tissue samples from those affected are available and comparisons with defined control groups are difficult to achieve.

The SERIMM research network aims to shed light on indications of altered metabolism of the neurotransmitter serotonin and dysregulation of the immune system. To this end, samples from patient cohorts and COVID-19 animal models (mice, hamsters) will be examined in parallel using high-throughput analysis methods.

This work is intended to make an important contribution to a better understanding of the pathophysiology of ME/CFS and to help us better understand changes in the tissue and immune system in ME/CFS. Furthermore, ME/CFS-specific biomarkers are to be discovered and mechanistic studies are to be carried out in animal models. In the future, this should allow the testing of active substances and other treatment modalities for ME/CFS in preclinical models and contribute to the development of new therapeutic approaches.

subprojects
Clinical characterization for biomarker discovery
funding code: 01EJ2410A
Total funding amount: 818,240 EUR
funding period: 2024 - 2027
Project management: Dr. Helena Radbruch
Address: Charité - Universitätsmedizin Berlin, Campus Mitte, Institute of Neuropathology
Charitéplatz 1
10117 Berlin

Development and analysis of a SARS-CoV-2-induced golden hamster animal model for ME/CFS
funding code: 01EJ2410B
Total funding amount: 253,298 EUR
funding period: 2024 - 2026
Project management: Dr. Michael Mühlebach
Address: Paul Ehrlich Institute Federal Institute for Vaccines and Biomedicines
Paul-Ehrlich-Str. 51-59
63225 Langen (Hessen)

Development and analysis of a SARS-CoV-2-induced mouse model for ME/CFS
funding code: 01EJ2410C
Total funding amount: 314,262 EUR
funding period: 2024 - 2027
Project management: Dr. Gregor Ebert
Address: Helmholtz Zentrum München, German Research Center for Environmental Health (GmbH), Institute of Virology
Ingolstädter Landstr. 1
85764 Oberschleißheim

Integrative transcriptome analyses of human and animal model samples for ME/CFS
funding code: 01EJ2410D
Total funding amount: 167,638 EUR
funding period: 2024 - 2027
Project management: Dr. Emanuel Wyler
Address: Max Delbrück Center for Molecular Medicine in the Helmholtz Association (MDC)
Robert-Rössle-Str. 10
13125 Berlin

Integrative data analyses of human and animal model samples for ME/CFSIntegrative data analyses of human and animal model samples for ME/CFS
funding code: 01EJ2410E
Total funding amount: 175,537 EUR
funding period: 2024 - 2027
Project management: Volker Bruns
Address: Fraunhofer Society for the Promotion of Applied Research eV, Fraunhofer Institute for Integrated Circuits
Am Wolfsmantel 33
91058 Erlangen
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neophyte32 said:
Is it really necessary to wait for a complete replication before making use of the leads already emerging from DecodEM and launching complementary studies?
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No, I don't think so, but I can see that a replication might still be thought useful.

I'd rather see money going into SequenceME & LC, but the German government may not want to help fund that for all kinds of reasons. It's the sort of project that ought to be suitable for EU funding, but it's a right pain to apply for (and being in a country that took its ball home probably doesn't help).
 
neophyte32 said:
On the other hand, I am surprised, and a little disappointed, to see that Blog ME/CFS appears to be calling for a replication of DecodEM. I fully understand the need to confirm scientific findings, but a full replication could mean another three, perhaps even five years.

Is it really necessary to wait for a complete replication before making use of the leads already emerging from DecodEM and launching complementary studies?
Click to expand...
Trying to replicate something doesn’t mean that you can’t try to work with the data you’ve already got.

And why would we not want more genetic data? Power is king in genetics, so more samples would give us much better insight than we have today.
 
Utsikt said:
Trying to replicate something doesn’t mean that you can’t try to work with the data you’ve already got.

And why would we not want more genetic data? Power is king in genetics, so more samples would give us much better insight than we have today.
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Time and money, that is also part of the problem.
Of course, the more data we have, the better. I know that perfectly well. But funding is not unlimited, and I thought there was already a great deal we could learn from DecodEM, SequencEM, and the German genetic study looking, among other things, at several affected members within the same families.

Obviously, if a new genetic study can be carried out in parallel, without swallowing up huge amounts of money or making us wait another five years, I can only be in favour of it.

Since the beginning of my illness, though, I have been especially obsessed with another avenue: building a proper tissue biobank, particularly brain tissue, collected from severe or very severe patients who have chosen euthanasia and agreed to donate their tissues for research.
I have always felt that this is where, together with genetics, we may find some of the key answers needed to finally understand this disease and make real progress.

But fundamentally, yes, how could I disagree with you ? The more solid data we have, the better. The real question is simply one of time, priorities, and available funding.
 
neophyte32 said:
The real question is simply one of time, priorities, and available funding.
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I don’t see how replicating DecodeME or SequenceME would impede any other research. Biobanks are a high priority for me as well, but that can be set up independently from the genetics.

Based on the amount of babble that gets funded, I think the pragmatic response is to just try to siphon as much as possible into the guaranteed knockout projects like genetics, biobanks, family genetics, and care for the most severe, and hope that some of it gets done.
 
and Germany wants to do a kind of bigger project on Genome sequencing anyway.
As far as I can tell it’s a focus besides clinical trials and basic research.

building infrastructure, sadly, is not planned at the moment through the decade.

If anyone wants to write something to Matthias Hauer from BMFTR or someone from the steering committee regarding scientific ideas I would appreciate it.
 
Thought this comment about possible future directions for CRH autopsy research was maybe relevant to the brain autopsy discussion on this thread.

jnmaciuch said:
In which case it might be useful to look at this other CRH+ population in the BSNT. Maybe the brain stem as well. If those are also depleted, it would tell us that the problem probably isn’t starting in any of those brain regions, but somewhere upstream that relays to all of them. Which would probably be either the dorsal root ganglion, or actual immune signaling somewhere. That might be something the Netherlands team would be interested in, though I think funding is going to be the most immediate hurdle for them to pick up new questions.
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Utsikt said:
Have you seen it talked about publicly anywhere? It would exciting if they are actually .
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not really, maybe at the beginning of the Decade a bit. Doro Bär highlighted it a few times if I recall correctly but not in detail.
but there is that part on genome sequencing I screenshotet at the beginning of this thread, it’s from the National Decade Homepage at BMFTR.

there is also a paper from Albani and Lauterbach who originally „designed“ the Decade or gave Input -and there originally was not a part on Genome research.

So BMFTR clearly wanted that part. But i fear their plan looks more like using existing cohorts and then analyzing their genomes.
 
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