University Hospital Regensburg: project “Miracle” investigates the invisible burden of ME/CFS

Mij

Mij

Senior Member (Voting Rights)
January 22, 2025

The University Hospital Regensburg (UKR) is initiating the "Miracle" project together with the University Hospital Gießen and Marburg (UKGM) to research the mysterious disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The disease is a massive burden for those affected: extreme, permanent exhaustion, pain and physical limitations often make a normal life impossible. The three-year joint project is intended to provide new insights and is funded by the Federal Ministry of Education and Research (BMBF) with a total budget of 2.5 million.
LINK
 
Auto-translated from German. I added some line breaks.

What makes “Miracle” special

"Miracle" looks where others don't look - for example at the so-called neutrophil granulocytes. These essential defense cells of our immune system are the most common immunocompetent cells, but are extremely difficult to research: They cannot be cultured and must be examined immediately after removal and gentle isolation.

At the UKR, research into neutrophil granulocytes, primarily by Dr. Michael Gruber, head of the research laboratory at the Department of Anaesthesiology, already looks back on 25 years. This experience makes the UKR team led by project leader Dr. Dr. Alexander Dejaco, Clinical Scientist at the Department of Anaesthesiology, a pioneer in a difficult but highly relevant field of research.

"We want to find out whether these cells play a key role in ME/CFS," explains Dejaco. Together with the overall director of the network, Dr. med. Elisabeth Schieffer from the Clinic for Cardiology, Angiology and Internal Intensive Care Medicine at the UKGM came up with the idea for “Miracle” – an innovative project that successfully raised funding from the BMBF.

“Miracle” also reaches the seriously ill: In an unusual approach, bedridden patients are included in the study. Home visits make it possible to collect data from a patient group that is otherwise often excluded from studies.

Subject of research

"Miracle" is dedicated to the disease-related changes in cell functions and aims, among other things, to research the exact mechanisms that lead to ME/CFS and are still a mystery today. Immunological, inflammatory and metabolic processes are examined in detail. With the help of artificial intelligence (AI), the results are analyzed at the UKGM in order to better understand connections.

The aim is to identify so-called biomarkers - measurable characteristics - that make diagnosis easier and enable even more targeted treatment.

Why “Miracle” is important

ME/CFS is often diagnosed late or incorrectly. Patients often struggle for years with misdiagnoses such as burnout or depression because there are no objective tests. They often encounter a lack of understanding - even from doctors or insurance companies.

With new biomarkers, doctors could diagnose ME/CFS more easily and objectively in the future. Understanding the disease mechanisms could pave the way for specific treatments.
 
Now recruiting participants:

The MIRACLE research project investigates immunological, inflammatory, and metabolic pathways in ME/CFS. In this collaborative project between the University Hospital of Marburg (UKGM) and the University Hospital of Regensburg (UKR), a total of 200 patients with ME/CFS and 200 healthy control subjects will be studied. Initial data collection and recruitment will be conducted via a web-based questionnaire and an online video consultation.

Patients with very severe ME/CFS who are unable to attend an outpatient appointment will initially be offered an online appointment and, if possible, visited at home so that this previously under-represented patient group can also be included. A comprehensive data analysis is being carried out using artificial intelligence and modern statistical methods to search for patterns for biomarkers and patient clusters in the complex data sets. At the University Hospital Regensburg, Department of Anesthesiology, detailed analyses are being carried out to determine the inflammatory profile of neutrophil granulocytes as a critical part of the immunological defense system. This includes, among other things, the analysis of neutrophil granulocyte behavior, such as migration, production of reactive oxygen species, DNA network formation, and lytic protein release. The Department of Cardiology, Angiology, and Intensive Care Medicine at Marburg University Hospital is investigating the proteome of high-density lipoprotein (HDL), which, as part of reverse cholesterol transport, provides clues to cellular and metabolic processes. Furthermore, cultured endothelial cells are stimulated with HDL-associated proteins to investigate their inflammatory potential. 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 for the diagnosis and treatment of ME/CFS.

Dr. Elisabeth Schieffer's lecture, in which she presented the project at the "ME/CFS Symposium 2025 – Research and Health Care Studies in Germany" in Berlin in May, can be found here: Elisabeth Schieffer | ME/CFS Symposium 2025: BMBF Research Network – MIRACLE

The following document contains further information for patients and a link to a questionnaire that you can use to participate in the study. Patient information

If you have any questions or other concerns, please contact us at the email address below.

Your Miracle Study Team

Miracle.mr@uk-gm.de


We are also looking for​

For this purpose, we are currently looking for healthy volunteers (male/female/male) who are willing to
complete several online questionnaires (approximately 30 minutes) and undergo
a brief physical
examination, hand strength measurement, a standing test, and a blood draw during an on-site appointment at Marburg University Hospital
. The on-site appointment will take approximately one and a half hours in total
. Due to laboratory procedures, participation is only possible in the mornings and early mornings.

Requirements for participation:

  • 18-65 years
  • Residence in Germany
  • Freedom from infection four weeks before the appointment
  • no known diseases
  • no regular tobacco and/or alcohol consumption
  • no regular use of medication except:
    • hormonal contraceptives (“the pill”)
    • Medications for primary prophylaxis (preventive use, not due to illness)
There will be no financial compensation for expenses .

MIRACLE - Studie zu ME/CFS - Universitätsklinikum Giessen und Marburg

www.ukgm.de www.ukgm.de
 
OrganicChilli said:
Patients with very severe ME/CFS who are unable to attend an outpatient appointment will initially be offered an online appointment and, if possible, visited at home so that this previously under-represented patient group can also be included.
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They might want to start by understanding what the very severe can do. Anything other than collecting samples is too much, and for some that’s off limits as well unless it’s the samples that come out of your body naturally.
 
Utsikt said:
They might want to start by understanding what the very severe can do. Anything other than collecting samples is too much, and for some that’s off limits as well unless it’s the samples that come out of your body naturally.
Click to expand...
To clarify: I think it’s good that they will do home visits, but the wording made it seem like not being able to leave the home is the main hurdle for the very severe. That would be an issue for the housebound, i.e. the moderate.

They might need help from carers to fill in the questionnaires as well.
 
Here are some mentions of neutrophils in this year's studies.

Extracellular vesicle proteomics uncovers energy metabolism, complement system, and endoplasmic reticulum stress response dysregulation postexercise in males with myalgic encephalomyelitis/chronic fatigue syndrome (2025) —

At baseline, the most significantly enriched pathways, featuring the largest number of DAPs, were metabolism (11 proteins), neutrophil degranulation (5 proteins), and biological oxidations (4 proteins). This suggests that even at rest, ME/CFS patients exhibit substantial disruptions in metabolic processes and immune functions, specifically those involving neutrophils, which are key players in the body’s first line of defence.
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Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity (2025) —

Our findings provide strong and replicated evidence for chronic low-level inflammation (elevated CRP and cystatin C levels, and platelet, leucocyte and neutrophil counts), insulin resistance (elevated triglycerides-to-HDL-C ratio, ALT, ALP, GGT and HbA1c) and/or liver disease (elevated ALT, ALP and GGT, and low urea levels) in ME/CFS
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Charting the Circulating Proteome in ME/CFS: Cross System Profiling and Mechanistic insights (2025) —

Many of the granulocyte-related proteins found to be decreased in the patients are associated with neutrophil granules, stimulated secretion, and NETs, suggesting that changes in neutrophil maturation and/or activation states occur in ME/CFS
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Comprehensive transcriptome assessment in PBMCs of post-COVID patients at a median follow-up of 28 months after a mild COVID infection reveals upregulation of JAK/STAT signaling and a prolonged immune response (2025) —

we found an upregulation of the genes LTF (log2 fold change 1.6), ANXA3 (log2 fold change 1.0), and TCN1 (log2 fold change 1.3) that encode for the proteins Lactoferrin, Annexin3, and Transcobalamin1, respectively, all of which are associated with neutrophil degranulation and vesicular transport.
Click to expand...
 
Utsikt said:
To clarify: I think it’s good that they will do home visits, but the wording made it seem like not being able to leave the home is the main hurdle for the very severe. That would be an issue for the housebound, i.e. the moderate.
Click to expand...
Nothing moderate about being housebound! :) I think our thresholds have generally gone a bit weird.
 
Sasha said:
Nothing moderate about being housebound! :) I think our thresholds have generally gone a bit weird.
Click to expand...

While I think the grouping of mild moderate severe and very severe are broadly valid, I do think the words should maybe change. Mild ME/CFS entailed cutting down on most of my socialising and hobbies, not being able to work full time, regular spells of being so ill I couldn't easily leave the house when in PEM. I have a friend with hashimotos who is able to do much more than I was with 'mild' ME, and that's a nasty illness to live with!
 
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