RecruitingOBSERVATIONAL

Munich ME/CFS Cohort Study

This study, called MUC-CFS, is taking place in Munich and focuses on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in children and young adults up to 25 years old. ME/CFS is a long-term neurological condition that can cause extreme tiredness, difficulty with activity, and other symptoms like pain and sleep problems. It often starts after an infection, like glandular fever or COVID-19. Researchers want to follow young people with ME/CFS over time to understand what causes the illness, identify markers in the body that could help diagnose it, and find new ways to treat it. The goal is to improve the lives of those affected by this challenging condition.

At a glance

Status

Recruiting

Sponsor

Technical University of Munich

Enrolment target

200

Start

22 Jan 2019

Estimated completion

01 Jan 2029

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (ICD-10 G93.3)

What is this study about?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, often shortened to ME/CFS, is a complex and long-lasting illness. It can make you feel extremely tired, especially after even small amounts of activity, and cause problems with thinking, pain, and sleep. It's thought to affect more people worldwide than conditions like multiple sclerosis, and numbers have increased since the COVID-19 pandemic.

This study in Munich is designed to learn more about ME/CFS in young people, specifically those aged 25 and under. Researchers want to understand both what causes the illness (its 'pathomechanisms') and find what they call 'biomarkers' – which are signs in the body that could help diagnose ME/CFS or show how well treatments are working. By doing this, they hope to pave the way for better treatments in the future.

Most cases of ME/CFS seem to start after an infection, such as glandular fever (Epstein-Barr virus) or COVID-19, but other infections can also be triggers. The condition can really impact someone's life, affecting their ability to go to school or work, and reducing their overall quality of life significantly.

Key takeaways

This study focuses on ME/CFS in young people aged 0-25.
It aims to understand what causes ME/CFS and find clues (biomarkers) in the body.
The research hopes to lead to better treatments for ME/CFS in the future.
ME/CFS often starts after an infection like glandular fever or COVID-19.
The study will follow participants long-term to learn about the condition over time.

Who may be eligible?

To join this study, participants need to be between newborn and 25 years old (inclusive). You would also need to have received a diagnosis of ME/CFS that meets certain well-known medical guidelines, such as those from the Institute of Medicine (IOM) or the Canadian Consensus Criteria (CCC).

Additionally, there should be clear evidence or a strong likelihood that your ME/CFS symptoms started after an acute infection, like a bad cold or other illness.

There are certain health conditions that would mean someone couldn't join the study. These include major surgery recently, certain organ problems, or other serious illnesses like multiple sclerosis, some autoimmune conditions, or severe mental health issues. The study aims to focus on ME/CFS specifically, so people with other conditions that might explain their symptoms wouldn't be suitable.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you aged 25 or younger?
Do you have a diagnosis of ME/CFS from a doctor?
Did your ME/CFS symptoms likely start after an infection?
Do you have any serious existing health conditions, such as major organ failure, multiple sclerosis, or severe mental health issues?

Answer every question to see your result.

What does participation involve?

The information provided does not detail what taking part in the study involves in terms of visits, assessments, or overall duration. It focuses more on who can and cannot join. Typically, studies like this that aim to follow people long-term involve regular check-ups, which might include questionnaires, physical examinations, and possibly samples like blood or urine. You would likely be asked questions about your health and how ME/CFS affects you. Any medication you are currently taking would be reviewed. The study aims for long-term follow-up to understand how ME/CFS progresses over time in young people.

Potential risks and benefits

Potential benefits of taking part could include contributing to a better understanding of ME/CFS, which might lead to better diagnosis and treatments for young people in the future. You would also receive close medical attention related to your condition. Risks are not specified but typically involve any procedures needed, like blood tests, and the time commitment required. As with any study, you would have the right to withdraw at any time without giving a reason, and your medical care would not be affected.

Locations (1)

MRI Chronic Fatigue Center for Young People (MCFC), Children's hospital, Technical University of Munich (TUM) and Munic Municipal Hospital (MüK)
Verified postcode
Munich, Germany· Recruiting

Common questions

What is the main goal of this study?

The study aims to understand ME/CFS better in young people, find markers in the body for the illness, and discover new ways to treat it.

Who can take part in this study?

Young people aged 0 to 25 years old who have an ME/CFS diagnosis that started after an infection.

What is ME/CFS?

ME/CFS is a long-term illness causing severe tiredness, problems with activity, pain, sleep issues, and other symptoms, often triggered by an infection.

Why is this study important?

Because ME/CFS is a challenging condition, and understanding it better in young people could lead to better ways to diagnose and treat it.

Will I receive treatment if I join?

The study aims to *identify* targets for future treatments, not to provide experimental treatments currently, but you will receive education on managing your condition.

How to find out more

Uta Behrends, Prof. Dr.

uta.behrends@mri.tum.de +49 89 4140 2632 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.