The Tragic Passing of Maeve Boothby O’Neill
The passing of Maeve Boothby O’Neill, a young woman from Exeter, UK, has profoundly impacted her family and the greater community. Maeve, who suffered from severe Myalgic Encephalomyelitis (ME), died at the age of 27 in October 2021. Her mother, Sarah Boothby, provided a heartbreaking statement to the inquest investigating Maeve’s death, shedding light on the immense challenges faced by those living with this debilitating illness.
Maeve’s Exceptional Life and Abilities
Maeve’s mother described her as an exceptional child, with remarkable abilities that shone through from a young age. She was walking by ten months old, talking before she turned two, and captivated her entire school as the Narrator in the Christmas play at just six years old. Maeve’s academic achievements were also impressive – she was in the top 3% nationally for verbal reasoning at 14, earned straight A grades at 16, and was an A* Russianist by the time she was 18.
Maeve had a deep love for learning languages and a keen interest in world affairs. She had hoped to travel the world after finishing school, but her severe ME prevented her from doing so. Instead, Maeve poured her creative energy into writing, working on a series of historical novels set in the 1920s on Dartmoor, where she had grown up.
The Onset and Progression of Maeve’s Illness
Maeve’s illness was never fully explained, but the symptoms began slowly, without a clear trigger. As a teenager, she experienced persistent fatigue and low blood pressure, which caused her to collapse during physical exertion. After seeing numerous doctors and undergoing various tests, Maeve was diagnosed with ME/Chronic Fatigue Syndrome (CFS) at the age of 18.
Maeve’s cognitive abilities remained unimpaired, but her physical condition deteriorated severely. She became too unwell to leave home, and her mother, Sarah, had to give up her career to become Maeve’s full-time caregiver. Despite Maeve’s dedication to managing her illness, the lack of effective treatment options and the NHS’s limited understanding of severe ME eventually led to her tragic demise.
The Failure of the Healthcare System
Maeve’s three separate admissions to the Royal Devon and Exeter NHS Hospital Trust in 2021 were a crucial part of the inquest. Sarah Boothby believed the hospital’s failure to provide appropriate care and support led to Maeve’s preventable death.
According to the statement, the hospital did not respond adequately to the severity of Maeve’s presentation, failed in its duty of care, and missed critical opportunities to preserve her life. The hospital allegedly dismissed or argued with expert advice from specialists, such as Dr. William Weir and advocate Helen Baxter, who had experience in managing severe ME and malnutrition.
Maeve was repeatedly discharged to her mother’s sole care, despite her inability to provide the necessary medical hydration and nutrition. The hospital’s apparent lack of understanding about the management of severe ME, and their refusal to consider appropriate interventions like tube feeding, ultimately contributed to Maeve’s tragic decline and eventual death from malnutrition.
Maeve’s Wishes and the Inquest’s Findings
Maeve did not want to die. She was deeply motivated to recover and had dreams and plans for the future. However, the healthcare system’s inadequate response to her severe condition left her with no choice but to accept her fate. Tragically, Maeve died at home, surrounded by her loved ones, as she had requested, rather than in a hospital setting.
The inquest into Maeve’s death, presided over by Coroner Deborah Archer, concluded that Maeve died from malnutrition caused by her severe ME. While the coroner found that the hospital and other involved parties had acted properly, Maeve’s parents believe the systemic failures in the UK’s healthcare system, particularly regarding the management of severe ME, contributed to their daughter’s preventable death.
A Call for Change and Awareness
Maeve’s story has sparked outrage and a renewed call for action within the ME community. Her parents, Sarah and Sean, have vowed to continue advocating for better understanding, research, and treatment of this debilitating illness. They hope that Maeve’s legacy will inspire meaningful change, ensuring that no other individual with severe ME suffers the same fate.
“Maeve never wanted to die. She had dreams and hopes and plans,” her father, Sean O’Neill, stated during the inquest. “Even in the grip of her illness, she was reading extensively and wrote the first draft of a smart, funny, quirky crime mystery set on Dartmoor in the 1920s.”
The Stanley Park High School community extends its deepest condolences to the Boothby family. We encourage all our students, parents, and staff to learn more about Myalgic Encephalomyelitis and the challenges faced by those living with this condition. Together, we can work towards a future where no one with severe ME is left behind by the healthcare system. For more information and resources, please visit the school website.
The Need for Biomedical Research and Specialized Care
Maeve’s mother, Sarah Boothby, emphasized the crucial role that biomedical research and specialized care play in addressing the complexities of Myalgic Encephalomyelitis. She expressed hope that the advancements in research, such as the Decode ME study and Professor Ron Davis’s work at Stanford, would lead to a better understanding of the illness and the development of effective treatments and a cure.
Boothby also highlighted the lack of expertise within the NHS when it came to managing severe cases of ME. She lamented the hospital’s failure to consult with specialists like Dr. William Weir, who had extensive experience in treating individuals with severe ME. The inability of the healthcare system to provide the necessary medical intervention, such as appropriate tube feeding, ultimately contributed to Maeve’s tragic demise.
Maeve’s Legacy and the Ongoing Fight
Maeve’s family, friends, and the wider ME community are determined to ensure that her passing is not in vain. They are committed to raising awareness, advocating for better research and treatment options, and pushing for systemic changes within the healthcare system to better support individuals living with severe Myalgic Encephalomyelitis.
As Maeve’s father, Sean O’Neill, eloquently stated, “Maeve never wanted to die. She had dreams and hopes and plans.” The loss of such a vibrant and talented individual is a devastating tragedy, but it also serves as a powerful reminder of the urgent need for comprehensive care and support for those affected by this debilitating illness.
The Stanley Park High School community stands in solidarity with the Boothby family and the ME community. We encourage our students, parents, and staff to stay informed, engage in advocacy efforts, and support the ongoing fight for better understanding, research, and treatment of Myalgic Encephalomyelitis. Together, we can honor Maeve’s legacy and work towards a future where no one with severe ME is ever left behind.
