A young woman who died from ME said that it was “frightening to discover that there are no doctors who can help you” just months before her death, an inquest was told.
Maeve Boothby O’Neill died from the debilitating illness myalgic encephalomyelitis (ME) in October 2021 at the age of 27.
The inquest into her death on Friday heard an account from the young woman for the first time, as a private note she had written during her treatment was read out at Exeter Coroner’s Court.
Ms Boothby O’Neill said her treatment was “not working” and described seeking alternatives as like “walking in a wilderness of quacks and blogs”.
Earlier in 2021, as her health rapidly deteriorated, she wrote: “I cannot adequately explain how frightening it is to find at 18 that the only treatment which medical professionals are offering you, the only treatment there is, is not working, does not work, and that you are getting worse, not better.
“How frightening to discover that there are no doctors who can help you, that they do not even know what is wrong with you, and that in looking for effective alternatives you will be wandering in a wilderness of quacks and blogs.”
She said she “had every potential to be an asset to humanity” and “was determined to be a good patient” but went on to describe the helplessness she felt.
Ms Boothby O’Neill had suffered from ME since her teens, but her illness became more serious in her mid-20s, with her condition deteriorating sharply in the last seven months of her life.
She was admitted three times to Royal Devon and Exeter Hospital (RD&E) over the course of 2021, but she refused a fourth admission because no treatment was available to alleviate her condition.
ME, also known as chronic fatigue syndrome, is a debilitating disease that affects the nervous and immune systems and energy production, making it difficult to perform physical and mental tasks. It also causes severe pain and fatigue.
The inquest also heard on Friday from consultant Dr Julia Prague, who was asked by Devon coroner Deborah Archer if she had previously ever cared for someone as severely affected by ME as Ms Boothby O’Neill.
She replied: “Never ... and never since.”
Dr Prague cared for Ms Boothby O’Neill during two admissions to the RD&E in May and July 2021.
She first saw Ms Boothby O’Neill in hospital when the severely ill patient was wearing sunglasses, had large headphones on and was covered in blankets. When Dr Prague tried to lightly touch her, the weight was too much for her.
The consultant said: “She [Ms Boothby O’Neill] said hospital was not a good place for her with ME. It is noisy, loud, it’s chaotic and bright. Maeve always felt she would be better at home.”
During her second admission, between May and June, Ms Boothby O’Neill told doctors she wished to be discharged and to continue treatment at home in Exeter.
Dr Kashyap Patel, a consultant in diabetes and endocrinology, told the hearing he had tried to persuade her to remain on his ward but, as she had mental capacity, he could not stop her leaving.
The inquest continues next week.
2024-07-26T20:34:43Z dg43tfdfdgfd