There needs to be properly funded research into people suffering from myalgic encephalomyelitis (ME) and specialist services for patients, a GP who treated a young woman with the condition told her inquest.
Dr Lucy Shenton said doctors needed more help to treat patients such as Maeve Boothby-O’Neill, 27, who had the condition, also known as chronic fatigue syndrome, for a decade before she died at home in October 2021.
The inquest in Exeter heard that Boothby-O’Neill was admitted to the Royal Devon and Exeter hospital three times that year for treatment for malnutrition. In the last few months of her life, she was confined to bed, unable to chew food and had difficulty drinking because she was unable to sit up.
The inquest has heard that she was placed on a nasogastric tube for artificial feeding while in hospital but that it was removed following complications. An alternative – parenteral feeding through a vein – was rejected because it would have been unsafe in her case.
Shenton, who took over Boothby-O’Neill’s care in April 2021, said: “Regarding severe ME, there needs to be more funding and research to provide the evidence and guidelines for clinicians to work from. There needs to be somewhere within the NHS providing specialist care for patients with severe ME and an easy mechanism to access that provision.
“Although Maeve had severe ME, some of the problems in her care would apply to any complex patient with bespoke needs. From a patient safety point of view, I was trying to manage Maeve whilst I had other complex patients on top of my normal GP workload.
“Although Maeve’s case was unique, GPs managing complex cases with little support and no time out allotted in their working day for these cases is commonplace.”
Shenton did not give evidence in person due to health reasons, but provided written answers to questions. She said she did not recall saying to Boothby-O’Neill’s mother, Sarah Boothby, after her death that she had “never seen anyone so badly treated by the NHS” as her daughter was.
“If I did say this, I apologise, as I do not think it would have been a helpful comment to make to a bereaved relative,” Shenton said.
“Maeve knew that since her formal diagnosis in 2012 she had steadily deteriorated and by April 2021, she felt it was likely she would rapidly deteriorate and die. I was concerned that my earlier expressions of faith in the NHS could have been seen as another example of someone not listening or not believing Maeve.”
Shenton said that during the time she was Boothby-O’Neill’s GP, only one consultant expressed doubt that ME was a physical illness.
“Medicine is driven by the evidence and the paucity of evidence and therefore guidelines surrounding ME, and in particular severe ME, make decision-making and management more complicated.”
Shenton said many of the health professionals involved in caring for Boothby-O’Neill were not doctors and their “lack of understanding” of severe ME may have been relevant.
The inquest was adjourned until 9 August, when the coroner is due to record their conclusions.
