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https://archive.is/20240808125157/h...n-avoided-m7cjvgzr2#selection-2117.0-2417.211
‘I lived, Maeve died’: ME patient who got help writes to coroner
As Maeve Boothby O’Neill’s inquest approaches its conclusion, an American sufferer says he is lucky his doctors take the condition seriouslyA 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. He said: “If I was treated the way Maeve was treated, I would be dead just like Maeve.
“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.”
The inquest has heard that Boothby O’Neill was faced with several doctors who did not accept that ME was a medical condition and nurses that were “far out of their comfort zone”.
Dafoe told the coroner it was “a travesty that Maeve did not receive nutrition like I received” and explained how for 18 months he was kept alive by TPN through a peripherally inserted central catheter (PICC) line, a long thin tube inserted into one of the larger veins near your heart.
“I never got sepsis, but I did get a few infections,” he said. “They were treated with antibiotics and I got over the infections in a matter of days and was fine. The PICC line was installed at home, and when it needed changing, it was changed at home as well.”
A young Maeve Boothby O’Neill with her father Sean O’Neill, a senior journalist at The Times
Dr Ovishek Roy, a consultant gastroenterologist at the Royal Devon and Exeter Hospital, where Boothby O’Neill was admitted three times before her death, told the inquest that “without the required sterile conditions, TPN would be fatal” because it could quickly lead to a deadly infection entering the bloodstream and heart.
He also told the coroner that because Boothby O’Neill’s gut was working “you will do harm by not using it because the muscle of the gut will waste if you stop using it”.
“With ME we don’t know if that will happen irreversibly,” he added.
Dafoe, in his letter to the coroner, said that after his TPN he has been fed for the last eight years through a PEG-J tube, which allows liquid feed, fluid and medications to enter directly into the small bowel.
He said that every day he pumps nutritional fluid into one part of the tube and injects pureed food into another “to make sure my stomach does not atrophy”.
“I always lay flat when food is being pumped into me and laying flat has never, not once been an issue, or even caused any nausea or discomfort,” he said. “The tube has never pulled out, or gotten curled up, and I have never aspirated. It has also never gotten infected and I go days between cleaning it with hydrogen peroxide and also cannot change my bottom sheet more than once every few months, so it is not in a very sterile environment. Yet the tube has, for over 8 years, been completely fine, with no hint of infection or bad bacterial growth of any kind.”
• ‘A horrible way to die … and no doctors can help you’
Boothby O’Neill, whose father is Sean O’Neill, a senior journalist at The Times, was admitted three times to the Royal Devon and Exeter Hospital but resisted a fourth admission after being told there was no treatment that could alleviate her condition.
Sarah Boothby, her mother and main carer, had repeatedly pushed for artificial feeding at an earlier stage in her deterioration but was thwarted when doctors said they were “content” with her nutritional intake.
By her third admission in June 2021, doctors finally agreed to try a nasogastric feeding tube, placed through the nose down into the stomach, but her condition had deteriorated so badly it did not work. By this time Boothby O’Neill was bedbound and so hypersensitive to stimulation that she needed to be in a dark and quiet room where visitors could only whisper.
The inquest heard that she found the most basic of medical tests exhausting and the maintenance of personal hygiene so overwhelming that she didn’t have the energy to receive a bed bath and was declining washes.
