Dr David Tuller: When the Doctor doesn't listen: The death of Maeve Boothby O'Neil following the prejudice of the Wonford Hospital, Exeter towards ME.


Senior Member
When the Doctor doesn't Listen.

Dr David Tuller writes about the death of 27-year-old Maeve Boothby O'Neil of severe ME when the Wonford Hospital, Exeter refused to take ME seriously and dismissed her as they dismiss all ME patients.


In 2017, the London Review of Books published a commentary from an anonymous young woman with a prolonged illness that had seriously impaired her ability to care for herself. The situation was “infuriating,” she wrote in the short but impassioned article.

“Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do,” she wrote.

That young correspondent, Maeve Boothby O’Neill, spoke Russian, listened to jazz and read constantly. She loved musical theater, especially the shows “Wicked,” “Billy Eliot” and “Into the Woods.” She was plotting out a series of 1920s mystery novels set in the villages of Dartmoor, an upland expanse of bogs and rivers and rocky hills in southwest England where Maeve and her mother had once lived.

Maeve died on October 3, 2021. She was 27. On the death certificate, her physician noted “myalgic encephalomyelitis” — an alternate name for the illness known as chronic fatigue syndrome — as the cause. It is rare for a death to be attributed to either ME or CFS.

An inquest into the circumstances, including the actions (and inactions) of clinicians and administrators at the local arm of the National Health Service, or NHS, is expected to be held later this year. Maeve was diagnosed with the illness in 2012, after several years of poor health. She fought hard to access appropriate medical care and social service support from institutions and bureaucracies that did not seem to understand the disease.

“She did everything she could to survive,” wrote Sarah Boothby, Maeve’s mother, in a statement she prepared for the upcoming inquest. The NHS “did not respond to the severity of Maeve’s presentation, and failed in its duty of care,” wrote Boothby, adding that her death was “premature and wholly preventable.”

Maeve’s father and Boothby’s ex-husband, Sean O’Neill, a journalist at The Times, brought widespread attention to ME in a series of articles, including one last year about Maeve. His “creative, courageous” daughter, wrote O’Neill, “struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.”

By early 2021, Maeve’s condition had deteriorated to the point where she was unable to consume enough food, even with her mother preparing liquified meals. Boothby and Maeve’s GP at the time advocated for her to be hospitalized so she could have a feeding tube inserted. In mid-March, Maeve was admitted to the Royal Devon and Exeter Hospital. Noting that her tests appeared to be normal, the staff physician refused the tube-feeding request.

“They kept treating her as if she was making it up,” said Boothby.​
Maeve was discharged without a plan for providing her with sufficient nutrition at home, Boothby noted in a chronology of events of the last months of Maeve’s life that she prepared for the inquest. She was “unable to sit up, hold a cup to her lips, or chew,” wrote Boothby, and “all her symptoms were now highly exacerbated.”

  • https://www.codastory.com/waronscience/lisa-maria-kellermayr-anti-science/
    Further deterioration in Maeve’s condition led to a second hospitalization in May. By then, Dr. Weir had examined her and found her to be extremely debilitated. In a phone call and a follow-up letter, he recalled, he urged the hospital physician overseeing Maeve’s care to insert a feeding tube.

The hospital did not follow Dr. Weir’s advice. The doctor, Boothby wrote, was “adamant she would not tube feed Maeve and told Maeve she would ‘feel much better if you gave your hair a wash.’”

Again, Maeve was discharged without a plan for home care, according to Boothby. “She was completely immobilized except for being able to turn her head from side to side,” she wrote. “Her voice could not rise above a whisper. She was unable to reposition in bed or to lie on her side.”

During a third hospital admission that summer, a naso-gastric tube was finally inserted. But by that point Maeve’s body was unable to tolerate the hospital’s tube-feeding regimen. She responded with bouts of pain and constipation, which caused crashes and further exacerbated her condition. The tube was removed, and she was again discharged.

On August 27, 2021, Maeve turned 27.

When tube-feeding fails, another possible option is total parenteral nutrition, in which the digestive system is bypassed and patients are infused through a vein. In a letter dated September 9, 2021, Dr. Weir warned the chief executive of the Northern Devon Healthcare NHS Trust, which runs the hospital, that Maeve’s situation looked dire if this approach was not adopted.

“I have experience of similar cases leading to death and Maeve’s current clinical status shows all the initial hallmarks of this,” he wrote. “I am not exaggerating the issue when I say that this [total parenteral nutrition] may well save Maeve’s life.”

Maeve ultimately refused to be readmitted because the hospital would not guarantee that she would receive total parenteral nutrition, according to Boothby’s written chronology. Maeve knew that without nutritional support she was going to die, Boothby told me, and she wanted to die at home — not in the hospital while being denied care.

“She said, ‘At least we tried, mum,’” said Boothby.​
Maeve continued to deteriorate throughout September and received morphine for pain. On October 1, according to Boothby’s written chronology, Maeve “said she was experiencing mild hallucinations.” On October 2, she exhibited “rapid shallow breathing, racing heart, eyes rolling.”

At 1:45 a.m. on October 3, “Maeve was awake but incapable of utterance or focusing.” At 3 a.m., she was found dead. Doctors confirmed her death at 11 a.m., and her body was removed to a funeral home in the early afternoon.

That evening, Maeve’s GP visited Boothby. “She said she had never had a patient so poorly treated by the NHS,” wrote Boothby.


Senior Member
Again, my sympathy upon the death of your daughter. Both you and your wife tried so very hard, as did Maeve herself. The hospital trial should be most interesting....and whether anything is done or not, one has doubts. Still it will bring attention to the total lack of care and that's good.

Thanks for presenting the case, sadly it's your daughter, and no, I can't imagine how much it hurts. So much dashed at such an early age. Yours, Lenora


Senior Member

Trial By Error: My Article About the Life–and Preventable Death–of Maeve Boothby O’Neill
2 February 2023 by David Tuller 1 Comment

By David Tuller, DrPH

Last week, Codastory.com published an article I wrote about Maeve Boothby O’Neill, a 27-year-old in Exeter, England, who died in October, 2021, from complications of ME. The specific cause appears to have been malnutrition. Despite being alerted to the seriousness of Maeve’s condition, the local hospital resisted appeals to insert a feeding tube during her final months.