Fight for Emilie: Mother seeks expensive treatment for rare disease!

Fight for Emilie: Mother seeks expensive treatment for rare disease!

A mother's worries touch the heart: Claudia Kühweg (51) from Kirchberg in Saxony fights passionately for the health of her 15-year-old daughter Emilie, who suffers from myalgic encephalomyelitis (ME/CFS). This nasty illness has turned the family's life upside down because Emilie sleeps up to 17 hours a day, can hardly move and has reached the highest level of need for help with care level 5. The effects are serious - the family has almost lost friends, everyday life can hardly be managed, as Bild reports.

Emilie's symptoms began in kindergarten after she was infected with the Epstein-Barr virus. Five corona infections later, Claudia and her daughter are left without satisfactory answers because, despite numerous visits to the doctor, a diagnosis was not made for a long time. Eventually, a doctor diagnosed mitochondriopathy - a condition in which Emilie's cells can only produce 10-15% of the energy they need. At 0.41 µM, the ATP value is well below the normal value of over 2.5. These frightening figures make it clear how difficult Emilie's health is.

Help is expensive

Claudia is faced with a financial challenge because an urgently needed immunoadsorption therapy costs a whopping 30,000 euros - and the health insurance company does not cover the costs. As an early retiree, she spends 700 euros every six weeks on Emilie's nutritional supplements, an amount that cannot be managed in the long term. Out of desperation and in the hope of financing the therapy, the family started a fundraising campaign. In a tragic thought, Claudia even considered selling a kidney abroad to secure money, but dropped this plan because she doesn't want to leave Emilie alone after a possible operation.

The medical perspective on ME/CFS is complex. The pathophysiology and treatment of ME/CFS need improvements, according to a review. Heterogeneity and confusion in the classification make it difficult to understand this disease, which is also the concern of Prof. Dr. Klaus Wirth (68) from Frankfurt/Main is. Wirth has been actively researching ME/CFS for seven years and developing a drug strategy for treatment. His knowledge is based on over ten publications on disease development and more than 70 patents, making him an important voice in research, as PubMed explains.

A look into the research

Over the last five years, interest in ME/CFS has increased, partly due to its similarities to long or post-COVID syndromes. However, research shows that there are currently no clear, evidence-based therapeutic results for ME/CFS. In addition, there are high comorbidity rates, which indicate a possible psychosomatic component. The view of pathophysiology is shaped by various biological factors, including the microbiome and the immune competence of the mitochondria, which PMC reiterates.

The diagnostic criteria for ME/CFS require significant fatigue, worsening after exertion, and non-restorative sleep. Numerous symptoms, such as orthostatic intolerance, are also typical. The NICE guidelines no longer recommend cognitive behavioral therapy or gradual activation and thus place the emphasis on drug treatment. One thing is clear: targeted research is necessary to better understand and classify the symptoms of ME/CFS and long-COVID.

Emilie and her family are not only fighting against an illness, but also against the lack of understanding that they encounter. Her story is a powerful appeal to society to raise awareness of this painful and often misunderstood condition. “It’s time for those affected and their relatives to get the support they urgently need,” says Claudia. There should be no doubt about that.