‘I lived, Maeve died’: ME patient who got help writes to coroner

A patient with severe myalgic encephalomyelitis (ME) has told a coroner that the death of a young woman could have been avoided if she received the same tube feeding which has kept him alive for the past decade.

Whitney Dafoe, a 41-year-old American who suffers from the debilitating disease also known as chronic fatigue syndrome (CFS), has written a letter to Deborah Archer, the assistant coroner for South Devon, describing the death of Maeve Boothby O’Neill as a travesty.

Archer has been holding an inquest into the death of Boothby O’Neill, who died aged 27 in October 2021 after suffering with severe ME which left her bedridden and starving because she was too exhausted to eat.

Archer, who will deliver her verdict and findings on Friday, was told by NHS consultants that they could not attempt total parenteral nutrition (TPN), a type of tube feeding which bypasses the gastrointestinal tract and places nutritional fluids into a vein, because they couldn’t feed Boothby O’Neill while she was lying flat. Nor could they create “the required sterile conditions” in her bed, they said, because she couldn’t bear to be washed for periods of time.

In a letter to the court, Dafoe said that Boothby O’Neill’s death could have been avoided had she undergone the procedure. 

“Luckily, I had doctors who viewed ME/CFS as the serious physiological disease that it is, and understood that the risk of needing to take antibiotics occasionally or add a few extra steps to my daily routine was better than the certainty of death from starvation, dehydration or malnutrition, which is what killed Maeve.

“Maeve just needed a way to get nutrition into her body. I got TPN and lived. Maeve was denied TPN and died.”

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Source: The Times, 8 August 2024