Extreme physical weakness, respiratory infections, dizziness and joint pain: what sounds like symptoms of a bad flu is part of everyday life for those affected by ME/CFS. The abbreviation stands for "Myalgic Encephalomyelitis" and "Chronic Fatigue Syndrome". About 17 million people suffer from this severe neurological disease - and yet relatively little is known about it.
People affected by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) suffer from persistent physical weakness that cannot be explained. This, combined with many other individual symptoms, means that those affected are extremely restricted in their everyday lives, are unable to work or leave the house or may even be bedridden.
The main symptoms of ME/CFS are:
- constant exhaustion
- muscle pain
- joint pain
- headaches
- sleep disorders
- problems concentrating and memory disorders
Causes are unclear
The exact causes behind the mysterious disease have not yet been fully determined. However, it's believed that the disease consists of a combination of genetic, immunological and environmental factors and often begins after a viral infection.
ME/CFS affects people of all ages, regardless of sex or where they live. As it has not yet been possible to determine the exact causes, receiving an appropriate diagnosis can be difficult. One important criterion for the diagnosis is that the person has experienced the symptoms for an extended period of time (normally six months or longer).
Improving quality of life
ME/CFS treatments focus on alleviating the symptoms of those affected and improving their quality of life despite the disease. Current therapeutic approaches include:
Energy management/pacing: Those affected learn how to carefully plan their activities and include breaks to avoid overexertion.
Medical treatment: In some cases, medication is used to relieve pain, or to treat sleeping disorders or other specific symptoms.
Psychological support: Since many people with ME/CFS also struggle with their mental health, getting psychological support, such as cognitive behavioural therapy or stress management, can be helpful.
Rehabilitation: Specific physiotherapy and occupational therapy that is adapted to the individual's energy level can help to improve mobility and make everyday life easier.
Research and innovation: Continuous research is crucial in order to learn about the disease and develop new treatment methods.
Taking sufferers seriously
The disease has been a major subject of public debate since Covid-19, because ME/CFS can also be triggered by infection with the coronavirus. Between 10% and 20% of all people suffering from the long-term effects of Covid meet the criteria for ME/CFS.
Despite the large number of people affected, the disease is often not taken seriously and those affected are frequently dismissed as malingerers or psychologically unstable by those around them, but also by doctors. Collaboration between patients, doctors, therapists and researchers is crucial to deepening our understanding of this disease.
