Chronic Fatigue Syndrome (CFS / ME): What is it?

It is a disease that doctors do not yet know much about, but that kills those affected. Possible causes, symptoms and therapeutic approaches

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CFS / ME: In a nutshell

  • CFS / ME is believed to be a multi-system disease that affects the nervous and immune systems, as well as the energy metabolism, among other things
  • CFS can cause a variety of complaints. Characteristic are the rapid exhaustion and the strong, often delayed onset of exhaustion after exercise. At the same time, this can aggravate other symptoms
  • The causes are unclear. Infections with certain pathogens in combination with other factors may trigger the syndrome
  • It has not yet been possible to make a clear diagnosis. An experienced doctor must rule out other causes and correctly interpret the symptoms
  • There is currently no targeted therapy. It is particularly important not to overload yourself. Otherwise, patients try to alleviate the symptoms. Many take dietary supplements

CFS / ME: what is it?

It is a disease that suddenly kills people from life. Which can be similar or more restrictive than multiple sclerosis, rheumatism or cancer. The causes are not currently known, nor are there any ways to detect the disease using certain markers. There are no therapies that could be used to specifically treat the disease. Doctors and those affected try to alleviate the symptoms.

Even the name of the disease - Chronic Fatigue Snydrom or Myalgic Encephalomyelitis, ME for short - is controversial. The term CFS reduces the suffering to chronic fatigue and exhaustion, but there are far more symptoms. Those affected prefer the term ME. However, this implies that it is an inflammation of the brain and spinal cord, which is characterized by muscle pain. That too probably falls short. In 2015, American scientists suggested calling the disease "Systemic Exertion Intolerance Syndrome (SEID)", which means something like: a syndrome that affects the whole body and occurs after exercise. The sometimes extreme exhaustion that occurs after physical or mental exertion is currently one of the key symptoms.

In the meantime, more and more research teams and patient organizations around the world are looking for clues. "Many currently consider CFS to be a multi-system disease that affects the immune system, the nervous system and the energy metabolism," says Professor Carmen Scheibenbogen, head of the immunodeficiency outpatient clinic at Charité Berlin. The doctor has been dealing with the disease for many years.

How many people have ME is not clear. In Germany there could be up to 300,000 people affected, worldwide 15 to 30 million. First and foremost, it is women who typically fall ill between the ages of 30 and 40. But the syndrome also occurs in children and the elderly. The number of unreported cases is presumably very high because many doctors are not familiar with the disease and there are no suitable diagnostic methods. Perhaps there are also various ailments hidden behind the term CFS / ME.

Causes: What could trigger CFS / ME? What is possibly going on in the body?

As with so many diseases, chronic fatigue syndrome probably doesn't have just one cause. Rather, a number of factors play a role. "Many patients report that the disease started in them after an infection," said Scheibenbogen. Up to 80 percent of those affected associate CFS with an infection. The Epstein-Barr virus, which can cause Pfeiffer's glandular fever, is often mentioned. Other herpes viruses, flu and cold viruses, gastrointestinal germs, borrelia and chlamydia are also possible culprits.

It is not clear whether such pathogens really trigger the syndrome. Likewise, what they could change in the body. Some researchers speculate that the germs trigger a chronically active infection or are repeatedly reactivated. In the case of herpes viruses, which also include EBV, it is known that they remain in the organism and can become active again from time to time. The best-known example is probably cold sores. "An active infection can only be detected in a few people affected," says the expert.

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