News from Germany

wissenschaft.de "Den Muskeln fehlt der Sauerstoff"

Interview about PEM in long Covid and ME/CFS with sports physician Christian Puta

automatic translation into English:
https://www-wissenschaft-de.transla...en&_x_tr_hl=en&_x_tr_pto=wapp&_x_tr_hist=true

quote:

We believe that in about six years we will have a good understanding of how PEM works in detail. At the latest then, drugs can be used specifically at those parts of the body that have gotten out of control after a viral infection. These can be agents that improve circulation or drugs that directly strengthen the mitochondria. In clinical trials, existing drugs are tested as off-label drugs and new ones are developed. However, it will still be some time before approval is granted. Until then, the motto is: hang in there!

 

wissenchaft.de also has a paywalled article titled "The shadow pandemic" on Long Covid with interview with Carmen Scheibenbogen and Al-Aly:
https://www.wissenschaft.de/bdwplus/die-schattenpandemie/

 

Interview with Christian Puta who heads “'BioSig-PEM' research group, where six universities are researching the biological background of PEM."

He was also senior author of this paper:
Towards an understanding of physical activity-induced [PEM]: Insights into microvascular alterations & immunometabolic interactions…, 2024, Haunhorst+

»Den Muskeln fehlt der Sauerstoff«

("The muscles lack oxygen")

Translated snippets:

Link | Auto-translated link

 

Ok, let's get 36 universities on task and we can get the answer in one year.

 

Der Spiegel has made a list of 100 people who give hope for 2025, and on the list is Carmen Scheibenbogen

The presentation of her is paywalled, but I assume it's for her work for ME and LC.

Congrats!!

https://www.spiegel.de/panorama/car...-sucht-a-6b44c782-7a82-4f51-b20a-3560da0c3320

 

DeepL translation:

 

German Medscape had an article on ME/CFS 3rd January which Carmen Scheibenbogen just shared on Twitter so she might have been interviewed for it. Wasn't able to google translate this one, but it's praised on Twitter.

 

DeepL translation:

 

2.6 million euros for research into ME/CFS
The VADYS-ME research project investigates how vascular problems and circulatory disorders in patients with ME/CFS could trigger symptoms such as extreme exhaustion and concentration problems – with the aim of developing better diagnostic and therapeutic options.
LINK

 

https://dzhk-de.translate.goog/news...=es&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
News 27.01.2025
2.6 Million Euro for Research by ME/CFS
The research project VADYS-ME investigates how vascular problems and circulatory disorders in patients could: cause the symptoms such as extreme fatigue and concentration problems in ME/CFS – with the aim of developing better diagnostic and treatment options.

ME/CFS (Myalgic encephalomyelitis/Chronic Fatigue Syndrome) is a severe, complex chronic disease characterized by persistent exhaustion, pain and various physical symptoms. (Photo: iStock)
The aim of the project is to better understand the causes and mechanisms of this stressful disease and to develop new approaches for diagnosis and therapy. The project is by Prof. Dr. Dr. med. Wolfram Döhner, scientist at the Berlin Institute of Health (BIH) and at the German Heart Center of the Charité – Universitätsmedizin Berlin, partner of the German Center for Cardiovascular Research (DZHK).

ME/CFS: Vascular problems as a key mechanism?
Myalgaetic encephalomyelitis/chronic fatigue syndrome (ME/CFS) leads to a severe limitation of physical and mental performance. Affected people often suffer from extreme fatigue, muscle weakness and concentration problems. The disease occurs after infectious diseases, and the COVID pandemic in particular shows a significant increase in the incidence. Other viral diseases such as the Epstein-Barr virus (EBV), which is responsible for Pfeiffer's glandular fever, as well as influenza or other respiratory infections are associated with the development of ME/CFS.

In the present joint project VADYS-ME, it is investigated whether and how disorders in the regulation of the vessels and the blood supply affect metabolism and therefore also the function of tissues and organs. These can be seen contribute to the typical symptoms such as muscular weakness, generalized exhaustion and diffiseases of concentration.

Innovative approaches: imaging, biomarkers and data analysis
With imaging techniques such as magnetic resonance imaging, it is investigated how well the brain, the heart and the muscles are supplied with blood. The metabolism of skeletal muscles is also analyzed and blood samples from ME/CFS patients: women are specifically examined for certain characteristics (“biomarkers”) of the regulation of blood circulation.

The research project VADYS-ME is conducted by the Charité in cooperation with the Technical University of Munich (project leader Prof. Dr. med. Schmaderer) is funded by the Federal Ministry of Education and Research (BMBF) with 2.6 million euros. It combines the expertise of five Charité research teams, including the Berlin Institute of Health (BCRT), the German Heart Center Berlin, the Clinic for Neurology at the Charité and the Experimental and Clinical Research Center (ECRC), and the Technical University of Munich. From the very beginning, associated with stakeholders have also been involved in the project (Lost Voices Foundation and the ME/CFS Research Foundation) to include the perspective of patients and those affected in clinical research.

Prof. Dr. Dr. med. Wolfram Döhner, who leads the project, explains: “With VADYS-ME, we want to look for the mechanisms of ME/CFS better and for new methods for safe and quick diagnosis and also open up opportunities for new treatments to ultimately improve the quality of life of the patients.”

More Information on the Project:
https://www.gesundheitsforschung-bmbf.de/en/clinical characterisation-integrative-morphological-and-functional-investigations-from-18109.php

====

https://www.gesundheitsforschung-bm...und-funktionelle-untersuchungen-von-18109.php

1. common diseases
2. Pathomechanisms of ME/CFS
3. VADYS-ME

Clinical characterization, integrative morphological and functional studies of organ perfusion and biomarkers in patients with ME/CFS

funding code: 01EJ2406A
Funding amount: 2,401,447 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Dr. Wolfram Döhner
Address: Charité - Universitätsmedizin Berlin, German Heart Center of the Charité, Clinic for Cardiology, Angiology and Intensive Care Medicine (CCM)
Charitéplatz 1
10117 Berlin
Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) leads to a severe limitation of physical and mental performance, enormous suffering and severely affects the quality of life of patients. The causes and mechanisms of the disease are currently largely unknown. The VADYS-ME joint project is investigating the hypothesis that disturbances in the regulation of blood vessels and blood supply impair the metabolism of tissues and organs. This in turn can contribute to symptoms such as muscular weakness, generalized exhaustion and concentration problems. VADYS-ME will therefore specifically investigate factors and pathomechanisms of vascular function and blood circulation in ME/CFS. To this end, extensive clinical data will be combined with functional examinations, complex imaging methods and metabolic and laboratory tests in various tissues and organs. The connection between metabolic changes and mitochondrial function will also be examined in more detail. At the Charité - Universitätsmedizin Berlin, magnetic resonance imaging is used to examine the blood flow to the brain and heart muscle and to combine this with structural and functional measurements of these organs. Vascular regulation in the muscle and retina is also being investigated. Blood samples from the Charité ME/CFS biobank are being comprehensively analyzed with the aim of defining biomarkers for a vascular signature of the disease. The data and clinical parameters generated by the joint project will be jointly analyzed using bioinformatics to gain a better understanding of the disease-causing mechanisms of ME/CFS after infectious diseases. The results of this research will create a basis for the development of diagnostic markers and therapeutic strategies for ME/CFS.

 

https://www.gesundheitsforschung-bm...-von-post-exertional-malaise-bei-me-18111.php

BioSig-PEM - Identification of biopathological signatures of post-exertional malaise 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 BioSig-PEM research network aims to investigate the cardinal symptom of ME/CFS, post-exertional malaise (PEM). The aim is to identify key pathophysiological signatures of PEM phenotypes in ME/CFS patients using fitness trackers, molecular and immunological methods, and imaging methods.

This work is expected to make an important contribution to a better understanding of the pathophysiology of ME/CFS and to help measure the severity of individual PEM phenotypes. This will contribute to the development of new diagnostic and therapeutic approaches based on disease progression in the future.

subprojects
immune profiling and blood morphology analyses
funding code: 01EJ2408A
Total funding amount: 1,134,991 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Christian Puta
Address: University Hospital Jena, Clinic for Internal Medicine IV
Am Klinikum 1
07747 Jena

Raman spectroscopic signatures of blood cells
funding code: 01EJ2408B
Total funding amount: 185,571 EUR
funding period: 2024 - 2027
Project management: Dr. Anuradha Ramoji
Address: Leibniz Institute of Photonic Technologies eV, Department of Spectroscopy / Imaging, Working Group Applied Biospectroscopy and Bioassays
Albert-Einstein-Str. 9
07745 Jena

Investigation of PEM and ME/CFS-associated changes in tryptophan metabolism at the host and microbiome level
funding code: 01EJ2408C
Total funding amount: 266,314 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Silvio Waschina
Address: Christian-Albrechts-University of Kiel, Faculty of Agricultural and Nutritional Sciences, Institute of Human Nutrition and Food Science, Department of Nutriinformatics
Heinrich-Hecht-Platz 10
24118 Kiel

Harmonized Clinical Phenotyping and Biological Signatures
funding code: 01EJ2408D
Total funding amount: 545,547 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Martina Seifert
Address: Charité - Universitätsmedizin Berlin, Campus Charité Mitte, Institute for Medical Immunology
Charitéplatz 1
10117 Berlin

Harmonization and standardization of the diagnosis of PEM in ME/CFS patients
funding code: 01EJ2408E
Total funding amount: 95,010 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Uta Behrends
Address: Klinikum rechts der Isar of the Technical University of Munich, Clinic and Polyclinic for Pediatrics and Adolescent Medicine
Kölner Platz 1
80804 Munich

Investigation of PEM and ME/CFS-associated tryptophan metabotypes
funding code: 01EJ2408F
Total funding amount: 261,840 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Konrad Aden
Address: University Hospital Schleswig-Holstein, Kiel Campus, Clinic for Internal Medicine I, Gastroenterology, Hepatology, Pneumology, etc.
Arnold-Heller-Str. 3
24105 Kiel

 

https://www.gesundheitsforschung-bm...entifizierung-von-targets-in-me-cfs-18118.php

CURE-ME - Characterization of autoimmune responses to identify targets 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 causes 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. It is also unclear whether similar underlying mechanisms apply in adolescents and adults.

The CURE-ME research network aims to investigate how autoimmune processes induced by the Epstein-Barr virus (EBV) can lead to a change in the healthy immune response. To this end, immunological processes in samples from adolescents and adults will be examined, characterized, and specific immune cells that are activated by an EBV infection will be specifically inhibited.

This work is expected to make an important contribution to a better understanding of the pathophysiology of post-infectious ME/CFS. Newly identified biomarkers can be used for more specific and earlier diagnosis and as targets for new therapeutic options.

subprojects
Clinical and immunological phenotyping, analysis of autoantigens and T and B cell communication
funding code: 01EJ2411A
Total funding amount: 1,604,690 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Birgit Sawitzki
Address: Charité - Universitätsmedizin Berlin, Campus Charité Mitte, Institute for Medical Immunology
Charitéplatz 1
10117 Berlin

Clinical and immunological phenotyping and analysis of EBV autoantigens and autoantigens
funding code: 01EJ2411B
Total funding amount: 212,818 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Uta Behrends
Address: Klinikum rechts der Isar of the Technical University of Munich, Clinic and Polyclinic for Pediatrics and Adolescent Medicine
Kölner Platz 1
80804 Munich

 

https://www.gesundheitsforschung-bm...d-metabolischen-faktoren-bei-me-cfs-18121.php

MIRACLE - Clinical analyses of immunological and metabolic factors in ME/CFS

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a complex and highly debilitating disease for which there is currently no proven therapy. The options for clinical treatment of patients are currently limited. There are large gaps in knowledge, as hardly any tissue samples from those affected are available and comparisons with defined control groups are difficult to achieve.

The MIRACLE research network aims to investigate immunological, inflammatory and metabolic signaling pathways in ME/CFS. After recruitment using web-based questionnaires and online video consultations, which are also intended to include severely ill patients, various aspects of the signaling pathways will be investigated in more detail. Various processes of high-density lipoprotein (HDL) and the role of granulocytes in ME/CFS patients will be investigated. A comprehensive analysis of the collected data will be carried out using artificial intelligence and modern statistical methods to search for patterns for biomarkers and patient clusters in the complex data sets.

The long-term goal of this study is to uncover the causes of ME/CFS and to identify clusters and biomarkers that can be used to diagnose and treat ME/CFS.

subprojects
Clinic, HDL proteome, and AI
funding code: 01EJ2412A
Total funding amount: 1,425,303 EUR
funding period: 2024 - 2027
Project management: Dr. Elisabeth Schieffer
Address: Philipps University Marburg, Clinic for Internal Medicine, Cardiology
Baldingerstr.
35043 Marburg
Clinic and Granulocytes
funding code: 01EJ2412B
Total funding amount: 938,986 EUR
funding period: 2024 - 2027
Project management: Dr. Alexander Dejaco
Address: University of Regensburg, University Hospital, Clinic for Anaesthesiology
Franz-Josef-Strauß-Allee 11
93053 Regensburg

 

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

 

https://www.gesundheitsforschung-bm...ker-zur-pathophysiologie-von-me-cfs-18005.php

SLEEP-NEURO-PATH - Contribution of sleep-related biomarkers to the pathophysiology of 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 SLEEP-NEURO-PATH research network aims to characterize biological mechanisms associated with brain dysfunction in ME/CFS, such as cognitive disorders, fatigue, headaches, sleep disorders, and hypersensitivity to sensory stimuli. Dysfunctions of neuronal networks (detected using selected sleep characteristics) are associated with multimodal imaging and biochemical studies of the function of the vascular bed and supplemented by the determination of polygenic genetic risk profiles.

This work is intended to make an important contribution to a better understanding of the pathophysiology of ME/CFS and to help characterize biological mechanisms at the system level. In addition, predictors for ME/CFS at the individual level are to be derived, which offer approaches for future personalized therapy.

subprojects

Multimodal characterization of brain function and blood flow, neuronal metabolism and genetic risk structure
funding code: 01EJ2407A
Total funding amount: 720,879 EUR
funding period: 2024 - 2027
Project management: Dr. Claudia Schilling
Address: Central Institute of Mental Health, Clinic for Psychiatry and Psychotherapy, Neuropsychiatric Sleep Disorders Group – Sleep Laboratory
J5
68159 Mannheim

Characterization of brain function and vascular pathology with a focus on autonomic dysfunctions during sleep
funding code: 01EJ2407B
Total funding amount: 619,564 EUR
funding period: 2024 - 2027
Project management: Prof. Dr. Robert Göder
Address: University Hospital Schleswig-Holstein, Kiel Campus, Center for Integrative Psychiatry gGmbH, Clinic for Psychiatry and Psychotherapy
Niemannsweg 147
24105 Kiel

Mobile sleep studies in adolescents
funding code: 01EJ2407C
Total funding amount: 291,919 EUR
funding period: 2024 - 2027
Project management: Dr. Karen Insa Wolf
Address: Fraunhofer Institute for Digital Media Technology (IDMT)
Marie-Curie-Str. 2
26129 Oldenburg

 

I'm glad to see research on sleep. I just wrote this and I'm thinking of sending it to them. Can't find what email address I'd send it to, though. I'd welcome any suggestions before I send it as well:

---------

I am pleased to see that your organization is planning to undertake a project to study sleep-related biomarkers in ME/CFS. I am writing to ask that you take into consideration that sleep biomarkers may be affected by exertion in ME/CFS.

I have observed that, rather paradoxically, many people with ME/CFS report that after they perform enough exertion to trigger post-exertional malaise (PEM), they fall asleep later and/or sleep fewer total hours that night.

An informal poll on the Science for ME forum revealed that out of 31 people with PEM who responded, more than half slept less after exertion, with a quarter reporting that they do not sleep at all the night after overly exerting themselves. (1) About half also reported changes after exertion in temperature regulation and about three quarters reported exertion causing a “wired but tired” stimulant-like feeling before bed.

Only two studies that I am aware of have tested how sleep changes after exercise in ME/CFS (2, 3). The relevance of the findings from these studies to ME/CFS is limited though, as both studies used Fukuda criteria for inclusion, which does not require PEM.

It is important to take the effect of exertion on sleep into consideration, not only because it may reveal important insights into ME/CFS pathophysiology, but also because any difference in sleep between ME/CFS patients and controls may be insignificant if patients who have and have not recently done significant exertion are combined during analysis.

Thank you for your efforts to illuminate the biology of ME/CFS.


1. [Poll] How does exertion affect sleep? (Read instructions in first post). (n.d.). Science for ME. https://www.s4me.info/threads/poll-...-sleep-read-instructions-in-first-post.42312/

2. Togo, F., Natelson, B. H., Cherniak, N. S., Klapholz, M., Rapoport, D. M., & Cook, D. B. (2009). Sleep Is Not Disrupted by Exercise in Patients with Chronic Fatigue Syndromes. Medicine & Science in Sports & Exercise, 42(1), 16–22. https://doi.org/10.1249/mss.0b013e3181b11bc7

3. Kishi, A., Togo, F., Cook, D. B., Klapholz, M., Yamamoto, Y., Rapoport, D. M., & Natelson, B. H. (2013). The effects of exercise on dynamic sleep morphology in healthy controls and patients with chronic fatigue syndrome. Physiological Reports, 1(6), e00152. https://doi.org/10.1002/phy2.152

 

I have found some contact details:

https://www.zi-mannheim.de/en/research/people/person/1151.html

https://www.uni-kiel.de/en/person/goeder-robert-5898

https://publica.fraunhofer.de/entities/person/953f8f0e-f5a0-4db5-915a-8f966d2fcb1a

 

Thank you!

 

Research I've been waiting for. I do hope that oxygen supply and extraction are part of it but that is not mentioned, as far as I could see.