The Federal Patient Representative, Stefan Schwartze (3rd from left), learned about the care structures for children and young people with ME/CFS at the Bethel Children’s Center from psychologist Juliane Venghaus, Jeremy Schmidt, Thorsten Kaatze and Univ.-Prof. Dr. Eckard Hamelmann (from left to right). Photo: Mario Haase
When Corona makes you chronically ill: Patient representative visits special outpatient clinic in Bethel
The Federal Patient Representative, Stefan Schwartze (3rd from left), learned about the care structures for children and young people with ME/CFS at the Bethel Children’s Center from psychologist Juliane Venghaus, Jeremy Schmidt, Thorsten Kaatze and Univ.-Prof. Dr. Eckard Hamelmann (from left to right). Photo: Mario Haase
Finja is 17 years old. She could lead a carefree life. Go to school, meet friends, plan her career entry. But none of this is possible for the high school student. In 2022, Finja became chronically ill after a corona infection. She suffers from ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome, a severe neuroimmunological disease that often leads to a high degree of physical disability. ME/CFS drains all the energy from Finja’s body. She is permanently exhausted, can hardly leave her home, is dependent on a wheelchair and has to breathe oxygen in a chamber every day. She had to go a long way and endure many humiliations before the disease was diagnosed.
“The worst thing is that my illness is not taken seriously and recognized by public authorities, in society and even by some doctors. I just wish there was more information,” said Finja in an interview with Stefan Schwartze. The Federal Government’s Patient Commissioner visited the Bethel Children’s Center, which has set up a special outpatient clinic for children and young people with post-COVID and ME/CFS since 2022, to get an idea of the challenges and needs of these young patients.
It is estimated that around 40,000 children and young people in Germany are affected by ME/CFS. The majority of them suffer from it as a result of a corona infection, 25 percent of them even seriously. To date, there are only a few contact points in Germany for those affected with their complex and diverse symptoms. The outpatient clinic in the University Clinic for Children and Adolescent Medicine of the EvKB is one of them. The patients come from all over Germany, the number of inquiries is high. Nevertheless, it is paid for from on-board funds because the responsible public authorities in NRW do not recognize the need for such outpatient clinics and the funding is therefore no longer valid. “In response to our applications, we have repeatedly received feedback that these patients can be treated in doctor’s offices without any problems. Of course, this is not possible given the intensity and complexity of the clinical picture. We hope that a rethink will finally take place here,” appeals the medical director of the children’s center, Univ.-Prof. Dr. Eckard Hamelmann, to the patient representative Stefan Schwartze. Thorsten Kaatze, CEO of EvKB, emphasizes: “If we did not use our own resources for the outpatient clinic, there would be even fewer services for patients like Finja in Germany.”
Finja is happy to have found support in Bethel. Jannis (15) also feels “finally taken seriously”. He has hardly been to school since 2022. “It’s like I’m constantly standing next to myself. I’m very exhausted.” He lies in bed almost all day, and on good days he manages to take part in home schooling for 15 minutes. “Meeting up with friends is out of the question.”
Stefan Schwartze listened with concern to the statements of the young people, who were connected via video conference to conserve their energy. He stressed the urgency of raising awareness of the effects of COVID and other infections and increasing social recognition of post-acute infection syndromes. “Those affected need our full support. It is our job to give a voice to those who cannot speak out themselves and to ensure that they receive the necessary medical and social help.” He promised that he would continue to work towards this.
Jeremy Schmidt, medical director of the special outpatient clinic at the EvKB, looks after young patients like Finja and Jannis every day. “The disease ME/CFS existed even before the corona pandemic. However, it has become much more important due to the pandemic.” He also hopes for greater public awareness and support for those affected and for research. “It is important that we in medicine and society take care of this disease and these children, that we can recognize the disease earlier and treat and research it more effectively. There is still a lot to do!”
