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#16 Buried alive – (Not) a life with ME/CFS
The podcast "Plothouse" dedicates episode #16, "Buried Alive – (Not) a Life with ME/CFS," to a topic that is still unknown to many – but affects millions: ME/CFS, Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. The approximately three-hour episode offers moving insights into the lives of those affected and their families in Germany:
The atmosphere while listening to this podcast can be described as one of goosebumps, tears in the eyes, and rapt attention. As Visa Vie, also known as Lottie, presents her episode, it quickly becomes clear how intense and moving the topic is. It seems almost shameful to even be able to listen to this podcast – because people who are severely ill with ME/CFS cannot tolerate even the slightest noise for days or years. The slightest stimulus can overwhelm their bodies, causing physical recovery from a single sound to take months.
Many people have never heard of ME/CFS before, which makes it all the more important that this disease receives more attention in society.
But what exactly is ME/CFS?
Myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome, is a severe neuroimmunological disease that often leads to a high degree of physical disability. The illness usually occurs after an infectious disease, such as Epstein-Barr virus infection, influenza, or—increasingly since the COVID-19 pandemic—a COVID-19 infection. Therefore, a significant increase in the number of ME/CFS cases is expected. Those affected suffer from acute physical weakness, which is often initially misinterpreted as psychological symptoms. A lack of awareness within the healthcare system, among doctors, and in society at large means that patients are often left to cope with their illness alone and receive no help. Worldwide, approximately 17 million people are affected. In Germany, the number of ME/CFS sufferers was estimated at around 250,000 before the COVID-19 pandemic, including 40,000 children and adolescents—a number that has been rising due to the pandemic.
In the podcast “#16 Buried Alive – (Not) a Life with ME/CFS,” Lottie recounts the stories of five severe to very severe cases of the illness from Germany. She speaks with relatives and friends about the initial stages of the illness, its progression, and the care provided by loved ones until the patient's death. Despite the podcast's nearly three-hour length, she describes the situations vividly and in an easily understandable way. Especially towards the end, many patients and their families make appeals. These appeals are directed at the medical and pharmaceutical industries, as well as at politicians and society. To help make these wishes a reality, Lottie has launched her own fundraising campaign (see link below). She also states that a portion of the advertising revenue from this podcast episode will be donated. Studio Bummens, the podcast production company of Plothouse, also intends to contribute to ME/CFS research.
(NE)
Listen now:
▶ Spotify: Episode 16 – Buried Alive
▶ More info & sources:
www.mecfs.de/was-ist-me-cfs
www.plothousepodcast.de/episodes/folge16
