Donation for Sofia's ME treatment

Hi everyone,

I am Sofia, a medical researcher interrupted by disability. After many years of misdiagnosis and suffering, I was finally diagnosed with very severe ME/CFS. The illness confined me to bed, and I am currently unable to leave the house. Myalgic encephalomyelitis is a multi-system neurological disease that causes significant impairment in the nervous, endocrine, musculoskeletal and cardiac systems of the body. Because of how late-stage I was diagnosed, I am long overdue for treatment and the necessary mobility and health monitoring aids. Remaining in my present state without the intervention would be fatal.

Every day of the past months I felt like I am dying. I wake up fevered, feeling burning pain all over my body, so profoundly fatigued I can hardly stand up and walk to the kitchen. I have not had a refreshing sleep for years. I am bed-bound and unable to leave the house, speak or tolerate light. ME/CFS is characterised by something called post-exertional malaise – exacerbation of the symptoms after physical or mental effort. I cannot tolerate stress without suffering setbacks that make my disability progress further.

My immunologist believes the illness has been severely disabling for a long time, while I lived with immense pain. However, it was not until I lost the ability to walk that I got diagnosed. I ran marathons, studied for 12 hours a day in a library, and worked long shifts without accommodations. When I visited doctors with the symptoms of severe pain, noise and light sensitivity, vision loss, mobility limitations and lack of vitality, my concerns were trivialised. Cardiovascular complications are common in ME/CFS, and in July 2023 I survived a stroke. In December 2023, I got infected with the EV-A71 virus and became completely bedridden. The disease had to confine me to bed, unable to tolerate movement and stimuli, talk, walk or eat, to get recognised.

The energy I once spent on my academic career, artistic work and establishing myself in spite of the racial, trans and queer stigma – even more energy is now needed to just live another day. The illness makes even breathing a physically strenuous task. My friends know me as strong-willed, disciplined and passionate. The disease is completely antithetical to my character: in order to recover, I must rest. ME/CFS took away my life, career, and place in the community.

I am lucky to live in Berlin where the illness is being researched at the Charité and I can get an appointment with immunologists specialised on ME/CFS. However, individual doctor visits, tests, treatment, accommodations, monitoring devices and mobility aids are not supported by my health insurance. I continued to work well after becoming bedridden, but my health does not permit it any longer. I am rehaunfähig, meaning too ill to be at a hospital and cannot profit from a rehabilitation clinic. I was diagnosed with co-occurring Scheurmann’s disease, Ehlers-Danlos-Syndrome and POTS that require several interventions, including spinal surgery.

I wish to return to working in medicine when I recover. I believe having the perspective of a bed-bound patient and a highly functioning physician could produce powerful insights. ME/CFS has been recognised as a neurological disease by the WHO since 1969. In the last 55 years, the approved treatment has not been found. However, a combination of therapies would allow me to manage my health. I would deeply appreciate any help, be it a single euro or a share. Any extra funds will be directly redistributed to others in need.

Love, and thank you all so much,

Sofia