Since a SARS-CoV-2 infection in 2022, I have had Post-Covid condition (or LongCovid) and postural orthostatic tachycardia syndrome (POTS). Soon after the acute infection, I also met the international consensus criteria for myalgic encephalomyelitis, a chronic neuro-immune condition that is often triggered by a virus. I received the official diagnosis of myalgic encephalomyelitis in 2024.
Before my illness, I was a research scientist in physics, a university lecturer, and active in public outreach as well as a volunteer in the local mountaineering club, a marathon runner, and climber.
The illness took all of this away from me. Due to the severity of my condition (I have to spend 20 hours per day resting in bed, recovering from everyday activities like eating), I have a lot of time to think. And I am lucky enough to be able to think and to put my thoughts to paper because I am not as severely affected cognitively as I am physically.
But make no mistake. Every blog entry here is the work of multiple days, with breaks in between. On bad days, I cannot write at all. And while I am not against the use of AI as a disability aid, I want these words to be my own, so I only use AI for polishing grammar, even if that means writing these texts takes me even longer.
In the community, there are lots of discussions about the meaning of myalgic encephalomyelitis-specific terminology, starting with what the illness should be named, moving on to what exactly the illness’ hallmark feature, post-exertional malaise (PEM), is, how the severity of the illness should be classified, and on and on.
I have my own thoughts on some of these things, but I have also had a lot of time to think about concepts like empathy, hope, acceptance, positivity and many more. And, having been a scientist, I like to experiment and explore. This page is the place where I want to write down and share some of these thoughts, experiments, and explorations.