Final Words of Edina Slayter-Engelsman Highlight the Urgent Need for ME Awareness

In a poignant video message recorded shortly before her death, Edina Slayter-Engelsman laid bare the crushing reality of her life battling Myalgic Encephalomyelitis (ME). The 57-year-old, who had spent over three decades living in Scotland, expressed in her final words a profound sense of despair, stating, "I exist, but I do not live." This stark declaration encapsulated the overwhelming suffering she endured as a result of her severe ME, a debilitating condition that has left countless others in similar situations. Edina's journey took a tragic turn last month when she returned to The Netherlands, her country of birth, to seek an end to her suffering. Unlike the UK, where euthanasia remains a contentious topic laden with ethical considerations, the Netherlands offers legal avenues for assisted dying under strict regulations. For Edina, this decision was not taken lightly but was seen as a necessary "off-ramp" from the relentless agony that characterized her daily existence. In the wake of her passing, her family reached out to BBC Scotland News, hoping to shine a light on the often overlooked plight of those suffering from ME. Their aim was to raise awareness about the lack of research and support available for individuals grappling with this condition in Scotland. With estimates suggesting that around 250,000 people in the UK live with ME, the need for more attention to this debilitating illness is urgent. Edina's story is a testament to the harrowing effects of a condition that remains poorly understood. ME, also known as Chronic Fatigue Syndrome (ME/CFS), presents a spectrum of symptoms that can range from mild fatigue to severe, life-altering incapacitation. Unfortunately, a definitive cause or cure has yet to be established, and treatment options are typically limited to alleviating specific symptoms. The family's decision to share Edina's story underscores a growing frustration within the ME community regarding inadequate support and a glaring lack of research funding. Advocates argue that more needs to be done to understand this complex illness and to provide the necessary care for those affected. As awareness grows, it is hoped that policymakers and the medical community will recognize the urgency of addressing the needs of individuals like Edina. As the conversation around ME and assisted dying continues to evolve, Edina Slayter-Engelsman’s message serves as a stark reminder of the human cost of inaction. Her plea for help—a call for recognition and support—echoes loudly, inviting society to confront the challenging truths about illness, suffering, and the choices people make in their darkest hours. In remembering Edina's life and her final message, we are compelled to reflect on the responsibilities we hold towards those in pain and the urgent need for change in how we address chronic illnesses like ME.