Sam Schofield has died peacefully after living with myalgic encephalomyelitis (ME) and complications associated with hypermobile Ehlers-Danlos syndrome (hEDS), according to a deeply personal announcement from his family.
Sam died at 12:42, surrounded by his loved ones. His family shared the news of his passing while asking those who knew of his story to remember him and the life he lived beyond the illnesses that profoundly affected him.
In their message, Sam’s family said he died peacefully with family members at his side. Their words conveyed both the pain of losing a beloved son and the importance of ensuring that his life and experiences are not forgotten.
Sam had lived with myalgic encephalomyelitis, a serious and often disabling illness that can substantially affect physical and cognitive functioning. Severe ME can leave people with profound limitations in their daily lives, and Sam’s own experience provided a personal insight into the challenges faced by people living with the most severe forms of the illness.
His family identified ME and complications associated with hEDS as the circumstances surrounding his death. Hypermobile Ehlers-Danlos syndrome is a connective-tissue disorder that can affect multiple systems of the body. Beyond those details, the family has not publicly provided further medical information concerning Sam’s final illness.
Sam was also known for writing about his experience with severe ME/CFS and for drawing attention to the realities faced by people living with the disease. Through his writing, he offered a personal perspective on severe illness, medical care and the difficulties experienced by patients whose conditions can be poorly understood or difficult to manage.
His story helped bring a human voice to conversations surrounding ME and the experiences of severely affected patients. Rather than allowing his illness to completely define his identity, Sam used his experiences to communicate with others and highlight challenges that are often difficult for those outside the patient community to understand.
His death has now left his family facing the loss of a beloved son. The circumstances of his final moments were described as peaceful, with his loved ones around him.
For those who followed Sam’s story or were touched by his writing, his family’s request carries particular meaning: that he not be forgotten.
Sam’s legacy will live through the words he shared, the awareness he helped raise and the memories held by the people closest to him. While illness formed a significant part of his life, his family has emphasized the person behind the diagnoses — someone whose life, relationships and experiences mattered deeply.
As his loved ones mourn, they are left with the memories of Sam and the knowledge that he was surrounded by those who cared for him at the end of his life.
