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The Story

My daughter died of ME. I had to fight the NHS for answers

Oct 28, 2024
Sean O’Neill, Senior Writer at The Times and father of Maeve Boothby O’Neill, shares a poignant narrative about his daughter's battle with Myalgic Encephalomyelitis (ME) and the ensuing grief after her death. He reveals the systemic failures of the NHS in treating ME, highlighting the urgent need for reform and better awareness. O’Neill also discusses the emotional toll on families faced with such illnesses, advocating for increased research and support for those suffering. His journey sheds light on the complexities of grief and the fight for justice.
48:50

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Podcast summary created with Snipd AI

Quick takeaways

  • Maeve's tragic story underscores the critical need for better awareness and understanding of myalgic encephalomyelitis within the healthcare system.
  • The coroner's inquest highlighted systemic failures and prompted a call for improved treatment and special services for ME sufferers.

Deep dives

The Life and Illness of Maeve Boothby O'Neill

Maeve Boothby O'Neill was a vibrant and promising young woman whose life drastically changed when she developed myalgic encephalomyelitis (ME) at a young age. Initially diagnosed with low blood pressure and attributed her fatigue to typical teenage issues, the medical community failed to recognize the serious nature of her condition. By age 18, after years of struggling with debilitating symptoms like chronic fatigue and post-exertional malaise, Maeve received a diagnosis of ME, a poorly understood illness often dismissed as psychosomatic. As her health continued to decline and she became increasingly dependent on her family for care, the impact of the illness began to overshadow her once-bright future and aspirations of studying languages and politics.

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