Life was easy for Kathi. “We lived next door to each other and were always traveling together. She used to travel so much, she was such a positive person,” says friend Johanna Wolff in an interview with

But many of the beautiful shared memories have faded – because today everything is different. Today Kathi’s life is completely different. The 29-year-old suffers from ME/CFS – the disease is a serious combination of myalgic encephalomyelitis (ME, an inflammation of the brain and spinal cord with muscle involvement) and “Chronic Fatigue Syndrome” (CFS).

The woman from Cologne lies in a dark room, wearing an eye mask and earplugs day and night. Every influence, every effort, every detail bothers her. She is bedridden and is being cared for by her mother. Care level 4, nothing works anymore. A shocking sight, especially for everyone who is close to Kathi.

Kathi has been suffering from ME/CFS since August 2022, says friend Johanna in the fundraising campaign on “Gofundme”, where money is collected for Kathi and research into the disease. “Over time, her condition has gotten worse.”

ME/CFS is a serious neuroimmunological disease. Around 17 million people are said to be affected worldwide. Experts estimate that the corona pandemic has doubled the number of cases in Germany to around 500,000.

The term “chronic fatigue syndrome” has been criticized by many experts because it sounds as if those affected are simply tired all the time. “Fatigue” stands for the German term “exhaustion” in English and French. The symptoms are far more serious, as Kathi’s case and the millions of others show.

ME/CFS is a severe, chronic, multisystem disease. Therefore, those affected describe a variety of symptoms. Two of them are crucial for medical professionals to characterize them:

“This refers to a worsening of the symptoms that occurs after (even light) everyday exertion, which usually only begins after several hours or the following day, is still noticeable at least 14 hours after exertion and often lasts for several days (up to weeks or longer),” explain Renz -Pads and disc arches in their analysis. Furthermore, with ME/CFS there are, among other things

ME/CFS often begins after an infectious disease. The SARS pandemic (2002/2003) and Corona produced many new cases.

Around a quarter of all patients can no longer leave the house because of the illness; many are bedridden and dependent on care. Over 60 percent are unable to work. PEM ensures that the condition can worsen in the long term (or even permanently) even after the slightest effort. “For those who are severely affected, PEM can be triggered by just turning over in bed or the presence of another person in the room,” says the German Society for ME/CFS.

Details that seem far too familiar to Johanna when it comes to her friend Kathi. Sensory overload includes lights, sounds and smells. “She can’t watch TV, listen to music or enjoy the sounds of nature outside her window. Kathi’s illness took her life.”

Almost unbelievable: Despite the 17 million cases worldwide, the disease itself remains partly a mystery. There is currently no approved curative treatment or cure for ME/CFS. Recent studies point to a possible autoimmune disease and a severe disorder of energy metabolism, but the results are not yet certain.

That’s why Johanna not only wants to help Kathi with the campaign, but also other affected people. The fundraising campaign raised 15,000 euros, 10,000 of which went to research. Everything else donated will benefit Kathi and her family.

“I would like to tell her about the campaign at some point,” says Johanna to “There are so many people who support her and miss her.” People who aren’t even allowed to be in the same room as her – that alone would be too great a threat to Kathi’s condition.

For her birthday at the end of March, Johanna shared a touching video on Instagram. You can see scenes from a life that, from today’s perspective, touch the heart. Kathi with a smile, always on the move, always in contact with others. Yes, a lot of things seemed so easy.

“It breaks my heart to know how much pain you have to endure mentally and physically,” Johanna writes. “It breaks my heart that I can’t hold you and see your beautiful smile. That I can’t say ‘Happy Birthday’ and we celebrate life like we always did before.”

Celebrate life like before. Whether this will happen again is anyone’s guess. At least Kathi’s environment doesn’t want to give up hope yet.

By Thomas Werner (tw)/ with keko

The original for this article “Illness has “robbed her life” – Kathi (29) is tied to bed” comes from