Extreme exhaustion, isolation and hopelessness: ME/CFS makes children like Tim invisible. The illness steals his childhood and his family’s normality. His parents are fighting for medical help, but also for understanding and recognition.
In March 2024, shortly before his ninth birthday, Tim falls ill with a seemingly harmless viral infection. The cold symptoms go away, but Tim can’t get back on his feet. Extreme exhaustion remains, which worsens whenever Tim exerts himself. A brief meeting with friends leads to being confined to bed for days. School is hard to think about. The Lichtenthäler family’s world is turned upside down. Tim, who was once a fun-loving, active boy, now needs a wheelchair to get into the garden. The word “normality” has long since taken on a new meaning.
The now 10-year-old suffers from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a severe chronic multisystem disease that can occur after viral infections such as COVID-19, influenza, a Lyme infection or an infection with the Eppstein-Barr virus.
In Germany, between 80,000 and 140,000 children and young people are affected. But despite its widespread prevalence – and the trend is increasing – the disease is unknown in many medical circles. The consequences are fatal because misdiagnoses and incorrect treatments can make the condition of the sick children even worse.
Of misdiagnosis and ignorance
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“Tim looked out the window yesterday and said: ‘There is the freedom that I can no longer have without consequences,'” reports Conny Lichtenthäler, the boy’s mother, in an interview with PARENTS. For two years, she has watched her son suffer from a diffuse mix of symptoms, including extreme exhaustion, difficulty concentrating, dizziness, rapid heartbeat and shortness of breath. He has to endure missing his friends, school, his life. Even the slightest exertion can trigger days of bed rest and worsening of his symptoms – a condition known in the professional world as “post-exertional malaise” (PEM).
A brief meeting with friends resulted in Tim being confined to bed for days.
© Private
“Once he wanted to play outside with friends; after 20 minutes he came in and had to lie there for three days,” says Lichtenthäler. But the pediatrician can’t find anything that would explain Tim’s condition and is not prepared to issue a certificate for the school. “I had to do my own research on the internet and came across ME/CFS. When I asked the doctor about it, he didn’t even know if it existed in children.”
A children’s clinic where Tim was examined from head to toe and also had a psychiatric assessment initially even ruled out the diagnosis because nothing conclusive was found and the clinical picture was not known. Tim’s poor condition was attributed to lack of exercise. He should become active again and be integrated into school, according to the recommendation to parents. As we now know, this is the worst possible advice for ME/CFS patients.
When those affected have to help themselves
The one who finally makes the diagnosis is Dr. Astrid Weber. The internal medicine doctor and psychologist heads the Long Covid outpatient clinic in Koblenz.
But why is the disease so often overlooked and the symptoms misinterpreted? Diagnosis is so difficult, she explains to PARENTS, because there are no clear biomarkers: “It is a clinical diagnosis – the doctor’s experience has to reconcile this colorful picture of symptoms.”
In contrast to medical staff, ME/CFS patients and their relatives are usually exceptionally well informed. “I have never had such a well-informed patient clientele as with this disease.” They have no other choice because they are forced to do so by the challenges of the disease, said the doctor.
Too often, families like the Lichtenthälers experience that they don’t get help where they expected it, that their reality doesn’t count. This makes them all the more dependent on the exchange in self-help groups such as “Don’t recover”, “Don’t recover Kids” or “Fatigatio” and the work of initiatives like “My-child-can’t-anymore”. This is where what is actually expected of doctors happens: here is the information that helps families understand the disease and deal with it.
To the youth welfare office instead of to the doctor
Because the majority of doctors are not familiar with ME/CFS, the illness in children is often misinterpreted as school absenteeism, psychosomatic or depressive moods. Parents often find themselves caught in the crossfire of youth welfare offices.
Conny Lichtenthäler also confirms: “Parents – especially mothers – are often accused of protecting their child too much and keeping them from social contacts.” They would even be accused of having a mental illness – Munchausen by proxy syndrome – in which physically healthy people fake or consciously cause an illness in another person (often their own child) in order to then demand medical treatment. Some families are accused of endangering the welfare of their children and are threatened with having the child taken away from the family, she reports.
There are also often difficulties with schools due to compulsory school attendance. A farce for affected children, because without a diagnosis there is often no valid certificate. Tim also repeatedly tries to attend school, often with the result that his condition worsens because the pediatrician refuses to issue a certificate. It’s a tough test for parents, forcing them to fight on all fronts at the same time instead of finding relief.
The Lichtenthälers were hugely relieved when a certificate could finally be presented to school. Tim hasn’t attended school since then.
Living in the shadows
The consequences for the children affected are dramatic. They simply disappear from the scene, from public spaces, banished to their own homes. You don’t see them anymore. “It is a social withdrawal that the children do not want, but is forced by the illness,” explains Astrid Weber. “Friends and hobbies are lost, school education is massively affected, and everyday life is limited to mere existence.” For Tim, even using a telepresence robot for school lessons is too much. “This caused him to go into a crash again. The strain, cognitive and emotional, was simply too much.” Life is gradually shrinking in on itself. First the hobbies are perhaps too much, then the school, friends, conversations, noises, light, life. ME/CFS is becoming more prevalent.
Tim would actually be changing school to a secondary school in the summer. Legally, he is no longer allowed to be registered at primary school. Will he ever be able to attend the new school? “If our son gets better at some point, the school board says a plan should be developed for him.” So far, however, there is no concept in the German school system for students who are sick for such a long time.
The fight for recognition and support
Everyday life becomes a struggle for the whole family. In addition to the illness, affected families struggle with bureaucratic hurdles. With the diagnosis, Tim could finally apply for the level of care and degree of disability. It’s a difficult step for the Lichtenthälers: “You think at some point you have to do this for your parents, but not for your child.” In addition, the disease is little known in the healthcare system and cannot be depicted in the questionnaires. The patients and relatives have to fight for every achievement and recognition. Conny Lichtenthäler remembers the assessment by the medical service: “I prepared for around 30 hours. We were ‘lucky’ that the assessor knew the illness and assessed Tim correctly. Many families first have to go to court to enforce their rights.” ME/CFS has long been one of the diseases with the lowest quality of life – often lower than cancer or multiple sclerosis.
And not just for those affected. Conny Lichtenthäler cares for her son full-time and her grandparents are a great source of support for the family. ME/CFS never only affects those with the disease. It changes entire families, friendships, everyday life and routines. In addition to parents’ worries about their son or daughter, there are also financial worries if one parent has to give up their job to take over care. Siblings become shadow children. The entire system is under high strain.
Long waiting times, high levels of suffering
Dr. Weber emphasizes that the care situation for ME/CFS children is currently better than for adults, but the waiting times for a confirmed diagnosis are often several months, and for adults even up to 30. With the correct diagnosis, it is crucial that everyone involved – doctors, the school, friends and parents – understand how important it is to consistently protect a child from overload, says Weber. “So-called ‘pacing’ – consciously avoiding overload – is essential for children with ME/CFS. However, this approach goes against a child’s nature, as children are active and often exceed their limits.” Children would have to learn to consciously manage their energy in order to avoid crashes (post-exertional malaise, PEM).
Tim, who was once a fun-loving, active boy, now needs a wheelchair to get into the garden.
© Private
Hope through research?
According to Dr. According to Astrid Weber, ME/CFS is less common in children than in adults, but they are often more seriously ill when diagnosed. The proportion of children who are severely affected when first diagnosed is over 50 percent; for adults it is around 36 percent. “However, the prognosis for children is better because they show a stronger tendency to recover,” said the doctor.
Their suffering could soon be alleviated through advances in research. In the next decade, 50 million euros are expected to flow annually into research into ME/CFS and related diseases. “Hope has never been as great as it is now,” said Weber. Immunological studies in particular could soon shed light on which subgroups of the immune system are responsible for the severe course of the disease.
Even if there are no specific medications, there are promising off-label therapies that could at least alleviate symptoms. However, access to these medications remains a financial burden because they are usually not covered by health insurance companies. Costs that not every family can afford, which can lead to debt because parents have to cling to every straw, no matter how small.
Tim and Conny Lichtenthäler on vacation before Tim got sick.
© Private
Burden on families
Tim doesn’t just suffer physically, his fears are the worst: “If it stays like this, you can bury me right away,” he said. But in the search for therapeutic help, the next hurdles awaited. It was almost impossible to find outpatient psychotherapy for Tim that would support him via video, says Lichtenthäler: “Many therapists refuse because the clinical picture is too complex.”
The family finds the greatest support in self-help groups and clubs. From the beginning, Conny Lichtenthäler was committed to her son’s rights and used every opportunity to draw the attention of doctors and political leaders to the problem. Despite the decade of research, she also sees that there is still a lack of a comprehensive care network and education at all levels of society. “Right from the start, I put all my effort into raising awareness. The amount of money is far from adequate compared to the severity of the disease, the number of patients and the decades of ignoring it by politicians and the healthcare system.”
The silent necessity
ME/CFS is a silent torment that remains largely invisible. For children like Tim, everyday life has become a waiting game – one that pushes parents and children to their limits. With every further effort, with every visit to the authorities and renewed fight for medical recognition, they fight for what little is left. “We try to enjoy the little things in life,” says Lichtenthäler, “the starry sky or the butterflies in the garden. And we don’t give up!”
