Lara Timm is seriously ill. Everything, really everything means for you and your body: stress. The 18-year-old has been suffering from so-called myalgic encephalomyelitis, or ME for short, for several years – better known as ME/CFS, i.e. a combination with chronic fatigue syndrome. “She was previously such a cheerful child, wanted to become an architect, but now she reacts sensitively to everything and suffers,” says her mother Anja Schulz, while she stands next to the actual child’s bed, which now looks more like a hospital bed. There are numerous cans of medication there, provisions within easy reach, Lara wears sunglasses to block out the light and headphones to block out noise.
ME/CFS is a combination of myalgic encephalomyelitis and chronic fatigue syndrome. The severe and chronic neuroimmunological disease leads to extreme limitations: severe exhaustion, lack of resilience, extreme sensitivity of the senses. Around 650,000 people in Germany are affected by the disease, which in many cases leads to inability to work and the need for care.
The treatment is currently only symptom-oriented, as there is currently no therapy for a cure. The German Society for ME/CFS criticizes the fact that the disease is poorly researched scientifically in relation to its frequency and severity. The first public research funding has only been available since 2020.
Within two and a half years, everything changed for the young woman. Now everyday stresses, such as going to the doctor, which is only possible in a wheelchair, are torture. “If I’m too active and then calm down, then there’s a crash,” says Lara. Specifically, this means days, weeks or months in which it is completely paralyzed. It’s hard to imagine when you consider that she is already unable to do much more than occasionally use her tablet to find out about other treatment options or talk to her sister on the phone. “Even lying down is torture.”
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“Within four weeks I could no longer walk”
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Lara’s ordeal, related to the illness itself and the inadequate medical care, began with a visit to her family doctor. She felt weak, weak. At that time she was diagnosed with a flu-like infection, which her body probably needed longer to cope with. But the supposed infection never went away.
Lara felt like she was embarrassed. Night after night. Her legs lost strength and the feeling of dizziness increased. “She then completely lost coordination in her legs,” says mother Anja, who is also struggling with the exceptional situation. She is now at home around the clock, looking after her daughter – and her little sister, who has Down syndrome. “Within four weeks I could no longer walk,” says Lara. She lies huddled under a blanket, shaking slightly.
Numerous hospital stays have not been able to help Lara so far. She says: “We can only address the symptoms, not the cause. There is no cure.”
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At that time, the then 16-year-old was taken to a children’s hospital. “That’s strange,” the family was told about the symptoms. “We were there for three days. I got physical therapy and then had to go to a neurologist. The problem was: She triggered several triggers in me during the conversation.” Lara also suffers from anxiety and post-traumatic stress disorder. “The neurologist then said as a diagnosis that everything was just psychosomatic. What nonsense.” It was only in September 2024, months after visiting the family doctor, that she received a diagnosis in the post-Covid center. However, she has only recently been diagnosed with ME/CFS.
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Lara finds it difficult to eat herself. She now needs special liquid food because other foods cause her pain. “I have to eat, I know that. But I just can’t,” adds Lara. The daily ration (four times 200 ml) costs a whopping 50 euros. “She drinks maybe one portion a day,” says Anja. “She can’t do any more.” Lara has had both a urinary catheter and a feeding tube since the end of February. How is she supposed to regain her strength this way? The whole family is at a loss.
“I accept that I am dying in slow motion”
Lara seems calm in conversation, almost indifferent. Of course, this is also due to her calm, energy-saving way of speaking. “Emotions are exhausting,” moans the 18-year-old. At the same time, humor helps her get through the difficult times – but she accepts the pain herself. Nevertheless: Lara’s optimism has almost disappeared. “I have accepted that I am dying in slow motion.” For the first time, Lara’s voice trembles when she speaks. She’s scared – who wouldn’t be? She is just lying in her hospital bed, passing the day, as she says, until she can sleep again and thus escape from her situation. After all, everything, just everything, is stressful for her.
“Only the symptoms are treated, not the cause.” There is no medical cure for her condition in sight, but there is a small glimmer of hope. With the help of treatment from a specialist in Switzerland, the family resorts to what they highlight as one of the last options to specifically mitigate the symptoms of ME/CFS. “I will never be cured, I will have a maximum quality of life.” Fortunately, she doesn’t have to travel to Switzerland for treatment. “I’ll be dead before I get there.”
But there is a big problem: the enormous costs for special treatment. “The anamnesis alone costs 2,000 euros. The treatment costs at least 8,000, more likely 10,000 euros over two years,” calculates Anja, shaking her head.
Lara’s family has launched an appeal for donations for this purpose. Because they cannot raise the money for the treatment on their own. “This is priceless for us. We are completely dependent on help.” They have been collecting on the “GoFundMe” website for months – but so far the donations are not nearly enough.
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Lara struggles, tries to find joy in little things. Especially in the phone calls with her little sister, in which they don’t necessarily talk to each other much, but are just there for each other.
Use the following link to access the appeal for donations for Lara Timm on the “GoFundMe” website.
