Samuel’s Last Wish

Content Warning: This text discusses severe chronic illness (ME/CFS), intense physical suffering, and assisted dying. Please read this text only if you feel stable enough to do so.

When you are reading this text, Samuel is dead. At only 21 years of age, the weight of his suffering had become so unbearable that there was no path left for him to end it, except through medically assisted dying. Severe ME/CFS had turned his life into continuous torment, leaving him without relief, without reprieve, and without a future he could physically endure.

I am writing these words for him. I am aware that these words can never fully capture who he was or what he endured, but it was Samuel’s final wish that his story be told and carried forward, in the hope that people living with ME/CFS will no longer be forced into invisibility, but that their suffering will finally be seen, recognized, and met with meaningful action.

There exists immeasurable suffering that unfolds far from public view, hidden from everyday life and collective awareness. The suffering of those who are severely and very severely affected by ME/CFS belongs to this unseen reality. The influential German poet and playwright Bertolt Brecht once wrote the following lines in The Threepenny Opera words that resonate with haunting precision with the situation of people living with ME/CFS:

For some are in the darkness and the others are in the light. And you see the ones in the light, those in the darkness you do not see.”

Original version:

Denn die einen sind im Dunkeln und die anderen sind im Licht.
Und man siehet die im Lichte, die im Dunkeln sieht man nicht.

Samuel’s Story

Before COVID entered his life, Samuel was a healthy young man, fully alive, fully present, standing firmly in the middle of his future. He had plans, relationships, movement, noise, light. He belonged to the world in the way young people naturally do, without having to think about their bodies or ration their energy.

After a COVID infection, Samuel became severely ill with ME/CFS and like so many before him, he vanished from public life almost overnight.

The illness confined him to his bed, motionless in a darkened room. Light became unbearable. Sound became pain. He wore noise-canceling headphones not for comfort, but for survival, to shield his nervous system from sensory input that caused intense physical suffering. Even communication slipped beyond reach. The strength to speak disappeared, and eventually even writing became almost impossible.

For people like Samuel, hope for recovery is fragile at best. Research into ME/CFS has been chronically underfunded for decades. Many physicians and medical assessors still do not recognize the disease, despite estimates suggesting that up to one percent of the population is affected. To this day, there is not a single approved medication that can reliably alleviate its symptoms.

Yet even as his world continued to narrow, Samuel used what little strength he had left. Shortly before his death, with immense effort and under extreme suffering, he wrote a post on Reddit to draw attention to the reality faced by people with ME/CFS. It was an act of quiet courage a final attempt to speak not only for himself, but for countless others who are too sick to be seen or heard.

On January 30, 2026, Samuel chose medically assisted dying, gently bringing an end to a life that severe ME/CFS had turned into relentless suffering.

A Shared Human Responsibility

It is the responsibility of every one of us to bear witness to this reality. To listen when those affected can no longer speak, to look where suffering has been pushed out of sight, and to refuse the comfort of ignorance. ME/CFS patients do not lack strength or will they lack recognition, care, and justice. When an entire group of people is left to suffer unseen and unheard, it is not only a medical failure, but a moral one. To acknowledge their reality, to demand research, care, and dignity, is not an act of charity, it is a basic obligation we owe to one another as human beings.

Rest in peace, Samuel. May the world be gentler to you now. 🕊️