Emilie's fight against Me/CFS: Hope for life without pain

Emilie's fight against Me/CFS: Hope for life without pain

There are stories that touch deeply and make the heart difficult. Such is the fate of 15-year-old Emilie from Kirchberg in the Zwickau district. Her mother, Claudia Kühweg, has been fighting for a better life for her daughter for eight years, who suffers from the tricky myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This incurable disease leads to a complex neuroimmunological failure and lets Emilie dream of everyday life full of pain.

The symptoms of Emilie are shocking. Due to ME/CFS, it hardly has any strength, can hardly speak and is extremely sensitive to light and noise. A blood test has shown that Emilie's cells only work with 10 to 15 percent - an alarming news for her family. Her mother prepares tablets every day to relieve the agonizing symptoms. But despite the daily challenges, such as the strong permanent migraine, Emilie has a wish: she dreams of a fresh start, a degree and maybe emigration.

The challenge ME/CFS

The background of the disease is complex, including ME/CFS one of the neurological diseases classified by the WHO. Frequent triggers are infections, which also include Pfeiffer glandular fever, influenza and even covid-19. In the case of those affected, the disease often leads to massive stress intolerance, which means that even the smallest activities, such as going to the toilet, can lead to a drastic deterioration in the symptoms. Many are experiencing a so-called post-exertional malaise (PEM), which can even drag on for hours to months after an effort. These "crashes" are particularly stressful for the patients and affect everyday life enormously.

The severity of the symptoms varies greatly. According to information from the Ärzte Zeitung affects ME/CFS especially young people aged 15 Up to 40 years, whereby women are affected twice as often as men. The scientists and doctors are calling for interdisciplinary diagnostics and a coordinated care system to offer the affected patients better help like Emilie.

support for Emilie

Claudia Kühweg and her family are now asking for support for Emilie's treatment, especially for a necessary immunadsorption. Information on support can be found on the website www.goodcrowd.org/emiwill-zurueck-insleben . Emilie currently has care level 5, needs intensive help and mainly suffers from permanent complaints. Despite all these challenges, she shows unshakable courage and hope for improvement is a ray of hope for her.

It is important to sharpen the awareness of ME/CFS and to give affected families like that of Emilie's voice. The stories of these fighters show us that there is a person with dreams and hopes behind every diagnosis who fights for his right to life without pain.