A specialist who treated a woman with severe ME told her inquest it was “very unfortunate” that hospital staff were not familiar with the condition and said there was not enough evidence to conclude the illness was physical.
Maeve Boothby O’Neill, who died of ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome), became so ill she was confined to bed and found it almost impossible to wash, eat or drink.
Dr Roderick Warren, a consultant at the Royal Devon and Exeter Hospital, said neither he nor his colleagues had come across an ME case as complex as Boothby O’Neill’s. He told the inquiry: “I’ve never dealt with anyone as ill as Maeve with this condition before. It’s a unique case for me and I think it’s probably unique for everyone who’s dealt with it.
“Is it a shame that someone as sick as Maeve can be in hospital, where there are no people who know about the condition? Yes, it is a shame. It is a great shame.”
The inquest in Exeter heard that Boothby O’Neill’s GP, Lucy Shenton, wrote a letter to the coroner’s office saying: “Several doctors involved in her care have stated that they do not believe ME is a medical problem.”
During his questioning of Warren, Boothby O’Neill’s father, Sean O’Neill, told the inquest that he thought the “question of faith” was a central one. He said: “The reason I keep coming back to this question of faith is because I think it permeates not just Maeve’s treatment but that of many patients.”
When O’Neill asked him if he believed ME was a physical illness, Warren replied, “I don’t know what causes ME. Therefore I can’t say whether it is or isn’t a physical illness. That’s not the same as saying I don’t believe it is.”
He said he had read a lot about ME, adding: “I find the literature generally unclear. For me the focus should be on what kind of treatment a patient needs who has that diagnosis.”
Warren described how Boothby O’Neill was fitted with a nasogastric tube while she was in hospital to help feed her, but this was removed because it worsened her symptoms and she was discharged. She died two months later in October 2021.
Boothby O’Neill’s mother, Sarah Boothby, asked Warren, a specialist in diabetes and endocrinology, why there was no contingency plan in case the tube feeding didn’t work.
He said: “I don’t think it would have been possible to make a clear step-by-step plan. Each of the decisions to change from one feeding method to another is a complex decision that depends on Maeve’s condition and wishes at the time… I don’t think you can make a contingency plan in advance.”
The research is being hailed as a landmark by those working with ME patients. It was heard that Boothby O’Neill wrote to her GP at one point saying she was hungry and not getting enough to eat.
An expert in ME who was also involved in Boothby O’Neill’s treatment at Exeter Hospital, Dr David Strain, told the inquiry that there was still no hospital unit in England capable of treating patients with the condition. He called it a ‘travesty’ that some medical professionals do not believe it is a real physical condition.
The investigation is still ongoing.