Dear ones, you know what ME/CFS is important? This is the abbreviation for myalgic encephalomyelitis/Chronic Fatigue Syndrome, a disease that leads to severe physical disabilities and is hardly researched. More than 40 million people are likely affected worldwide. Current estimates in Germany place the number of people with ME/CFS around 650,000. One of them is our reader Jule, who shares insights into her life here. Thank you for yoru openness and all the best to you!
Dear Jule, you are ill. Can you explain to us how the disease manifests itself?
I have ME/CFS, a neuroimmunological disease characterized by a variety of symptoms. This disease has fundamentally changed me.
It often feels like my body is constantly fighting the flu, without a break. I am extremely weary, and every small task requires immense effort. It’s hardly possible for me to walk a few hundred meters.
There’s also a constant fog in my head: I lose words mid-conversation,struggle to read or concentrate. Telephone calls are almost impossible becuase my brain simply doesn’t engage. My body feels like it’s burning internally,I experience dizziness,a rapid heartbeat,and shortness of breath – as if my own body is holding me back.
When did you first experience the disease, and how has your life changed since then?
The first symptoms appeared in 2022. Initially, I attributed it to exhaustion from personal upheavals like separation, divorce, and moving. Doctors suggested it was stress or depression. But deep down, I knew it was something else – I was happy with my new partner and my job. Nevertheless, I suffered from sleep disorders, shortness of breath, a burning sensation, and constant weakness.
The collapse came shortly before my rehabilitation. It was then confirmed that I had ME/CFS. The rehab was incredibly exhausting – I barely managed one appointment a day. Afterward, I was unable to work. I fell from a fulfilling professional life into one that almost entirely takes place within my own four walls. Numerous doctor’s visits followed, along with applications for care, disability pension, and severe disability – an endless process.
Today,I live on full disability pension until 2026 and receive a care level. Motorcycles, my big hobby, are often out of reach – even though I managed to renew my driver’s licence with my last reserves of strength in early 2024.There are no recognized therapies, and I’ve had to finance a lot myself.I’ve spent almost 3000 euros on treatments this year. In the few good hours I have, I try to remember that I’m still here. But I can’t plan anything, as my condition can change at any time. I miss the freedom and spontaneity that used to be a given. this unpredictability is perhaps the hardest part.
How does your family cope with your illness?
My family is very supportive. My husband is my biggest support – he accompanies me to doctor’s appointments, manages the household, and simply *is* there for me, even when he’s dealing with his own health challenges. He helps me stay positive and slows me down when I risk overexerting myself through adrenaline surges.
My daughter is increasingly understanding what my illness means. However, she’s navigating her own difficult path. It hurts that I can only support her to a limited extent. As a mother, it’s difficult to lack the strength and energy to be