GP who treated woman with severe ME says more research funding needed

Adequate funding must be provided for research into people with myalgic encephalomyelitis (ME) and specialist services must be provided for patients, a GP who treated a young woman with the condition during her research told us.

Doctors need more help to treat patients like Maeve Boothby-O’Neill, 27, who suffered from the condition, also known as chronic fatigue syndrome, for a decade before dying at home in October 2021, according to Dr Lucy Shenton.

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 struggling to drink because she could not sit up.

The inquest heard that she had been given a nasogastric tube for artificial feeding at the hospital, but due to complications it was removed. An alternative – parenteral nutrition through a vein – was rejected as it would have been unsafe in her case.

Shenton, who took over Boothby-O’Neill’s care in April 2021, said: “When it comes to severe ME, more funding and research into ME is needed to provide clinicians with the evidence and guidelines to work with.

“There needs to be specialist care available somewhere within the NHS for patients with severe ME and there needs to be a simple mechanism to access that care.

“Although Maeve had severe ME, some of the issues in her care would apply to any complex patient with specific needs. From a patient safety perspective, I was trying to manage Maeve whilst having other complex patients, on top of my normal GP workload.

“While Maeve’s case was unique, it is common for GPs to treat complex cases with little support and without time allocated in their working day to deal with these cases.”

Shenton did not testify in person for health reasons, but did provide written answers to questions.

She said she could not remember saying after Boothby-O’Neill’s mother, Sarah Boothby, that she had “never seen anyone treated as badly by the NHS” as her daughter.

“If I said that, I apologize because I don’t think it would have been a helpful comment to make to a bereaved family,” Shenton said.

“Maeve knew she had been steadily deteriorating since her official diagnosis in 2012 and by April 2021 she felt it was likely she would deteriorate rapidly and die. I was concerned that my previous expressions of trust in the NHS might be seen as another example of someone not listening to or believing Maeve.”

Shenton said that during the time she was a GP at Boothby-O’Neill, only one specialist questioned whether ME was a physical illness.

“Medicine is driven by the evidence and lack of evidence and so guidelines around ME, and particularly severe ME, complicate decision-making and management.”

Shenton said many of the healthcare professionals involved in Boothby-O’Neill’s care were not doctors and their “lack of understanding” of severe ME could be relevant.

The inquest was adjourned until August 9, when the coroner will record his conclusions.