The illness is treacherous, the body and mind are drained. Those affected fight the stigma of mental illness. This is why scientists are looking for biomarkers to make a clear diagnosis possible.

Birgit Gustke has suffered every day from the complaints that her illness brings. “I used to do sports every day. Breathing while jogging was my meditation,” she recalls. Today, a 20-minute walk is enough to exhaust her so that she can’t do anything else for the rest of the day. 

Her fellow sufferer Christine C. has been affected for eight years. Before the illness, she ran marathons, was active in horse riding and played trombone in a jazz band. Today you have trouble breathing, she can only walk short distances and can not sit on the horse for more than ten minutes. “The will is there, but the body does not participate,” she says.

The symptoms are varied. Seemingly banal activities exhaust those affected to the utmost, rest does not bring rest. In addition, there are problems with concentration,  sensitivity to light and noise as well as a change in temperature, stomach, and intestinal complaints and chronic pain all over the body. 

Exhaustion that is more than burnout

Birgit Gustke and Christine C. suffer from ME / CFS. The abbreviation stands for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. A disease in which all systemic circles in the body are affected. Those affected are completely exhausted mentally and physically, the immune system is overloaded.

Around 17 million people worldwide are affected by ME / CFS. There are almost 300,000 people in Germany, but the number of unreported cases is significantly higher. To this day, the disease is very difficult to diagnose, and scientists do not agree on the causes either. 

Woman has a headache (picture-alliance / dpa / C. Klose)Severe chronic (head) pain is one of the symptoms of ME / CFS.

Many CFS patients also struggle with the stigma that stubbornly sticks to the disease. They are often wrongly classified in the category of mentally ill – burnout or depression. But the ME / CFS also affects the body. “I don’t know what’s going on in your head either. But they urgently need psychological help” – a sentence that Birgit Gustke had to hear from more than one doctor when she described her symptoms in a practice. 

ME / CFS is considered the disease of the modern performance society. The WHO has classified ME / CFS as a neurological disease since 1969. Nevertheless, many doctors who have been practicing for decades have learned nothing about the clinical picture during their studies because they did not exist at the time. People who have high expectations of themselves and who constantly overload their bodies without breaks are particularly susceptible.

Different triggers possible

Both women can still remember the beginning of their suffering well. For Birgit Gustke it started with shingles, for Christine C. with the viral flu. In addition to viruses, the triggers can be, for example, the influence of toxic substances on the body or a genetically determined reduced activity of the detoxification enzymes in the body.

The tricky thing about the disease is the permanent uncertainty about when the body will give up. “You never know when you’ll crash,” says Birgit Gustke. A really drastic breakdown happens twice a year, and it then becomes a regular case for care. Her husband has to wash and feed her.

At Christine C., these breakdowns, which are called “crashes”, happen more often. “It takes up almost a third of the month. I just collapse on the spot and lie there for half an hour before I can move again,” she says. For some people, crashes only take minutes, for other days, months, in extreme cases even years.

Looking for biomarkers

Dr. Michael Stark, head of the Institute for Behavioral Therapy and for Stress and Fatigue Research in Hamburg, is looking for so-called biomarkers. These markers are important to clearly distinguish CFS sufferers from healthy people. His research is based on two approaches.

Germany Prof. Michael Stark (private)Prof. Michael Stark is researching ME / CFS biomarkers

In contrast to other scientists, Stark regards the disorders in the immune system as secondary. “In my eyes, this is just the drop that makes it overflow. Because the immune system only goes into the basement after years of overloading. This is particularly evident in a disturbance in the ability of the vegetative nervous system to regulate,” explains the stress researcher.

Such a disorder can be measured in the patient using a sports medical procedure. It checks whether the two components of the nervous system, the stimulating sympathetic and the parasympathetic responsible for recovery, are in harmony. All of Dr. Heavily examined ME / CFS patients showed a massive regulatory disorder. This means that the body is permanently overloaded and is therefore no longer able to regenerate itself.

During nighttime measurements, it was found that those affected by ME / CFS hardly or no longer had deep sleep phases. This has a drastic impact on the body. “Sleep deprivation is used by the Americans in Guantanamo as an instrument of torture,” recalls Stark. 

Another research method is pursued by the University of Stanford: A functional magnetic tomogram (fMRI) can be used to detect a characteristic stimulus transmission disorder between the limbic system and the prefrontal cortex. The limbic system processes environmental stimuli, among other things, and the prefrontal cortex is responsible for action control.

“We were also able to detect this disorder in all patients that we sent to fMRI. This goes hand in hand with massive concentration disorders and exhaustion symptoms with cognitive overload,” says Stark.

On the trail of the viruses

The virologist Dr. Bhupesch Prusty and his team at the Institute of Virology and Immunobiology at the University of Würzburg are researching biomarkers from ME / CFS. He hypothesizes that viruses such as the herpes virus HHV-6 or the Epstein-Barr virus are the triggers. “When reactivated, these viruses produce certain types of proteins that cause the structure of the mitochondria to deform,” explains Prusty. The mitochondria in the body’s cells are responsible for energy production.

Epstein-Barr virus EBV (Imago / Science Photo Library)The viruses of the Epstein-Barr virus can also trigger ME / CFS.

An experiment with healthy cells, into which serum from ME / CFS patients was injected, showed that the fragmented mitochondria were no longer able to produce enough energy and even stopped the energy production in the cells with intact mitochondria. The result: the body is maximally exhausted.

Prusty and his team are currently working on developing a diagnostic method based on the experiment. “If we take the structure of the mitochondria as a parameter, we may be able to differentiate ME / CFS from other diseases when diagnosing ME,” says the virologist. “We also hope to be able to develop a drug that can help metabolize energy in the counteracts damaged cells. “

Recognition under social law difficult

It will still take a while until that happens. Above all, the correct diagnosis is important for the patients. Because without the diagnosis ME / CFS, social law recognition is difficult or impossible. In Germany, the health insurance companies do not then cover the costs of therapy or other assistance, and those affected cannot be assigned to any care level.

“There are people who come into existential emergency situations as a result of this. They are unable to work due to the illness, but they also do not receive any money from the health insurance company because ME / CFS was not diagnosed,” says Birgit Gustke. 

The goal in mind

The disease is currently considered incurable, but the two women fight against the disease as much as possible. Christine C. helps above all the personal exchange in self-help groups. “In the beginning, I was still reading a lot on social networks. But that made me angry. People feel outraged when it comes to who is worst,” she recalls.

Birgit Gustke is the chair of Fatigatio, a patient organization for ME / CFS sufferers. It is committed to better social law recognition of the disease. Christine C. is involved in Professor Stark’s practice in researching the disease. She has one goal in mind: to become so healthy that she can even play the trombone again.


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