Doctors held 'outdated' ME views, inquest hears

Maeve Boothby-O’Neill died at home in Exeter in 2021 after she had lived with myalgic encephalomyelitis (ME) since the age of 13

A hospital treating a woman with myalgic encephalomyelitis (ME) was warned a month before her death that staff had "outdated" views about her condition, an inquest heard.

Dr Willy Weir, a retired NHS consultant and expert in ME, said he had urged bosses at the Royal Devon and Exeter Hospital to readmit Maeve Boothby-O’Neill for life-saving treatment.

The 27-year-old died at home in Exeter in October 2021 having had the illness since the age of 13.

The retired consultant told the hearing in Exeter that he had written to the chief executive of the hospital on 9 September expressing his concerns about her case and the “outdated” views some doctors held about ME.

'Seriously damaging effect'

He wrote: "Consequently, patients with this condition have frequently been regarded as perversely inactive without any regard for the possibility that their inactivity is not due to deliberately perverse behaviour.

"This can lead to completely inappropriate management of someone genuinely severely affected by a condition with demonstrable organic pathology.

"A further point I wish to make is that it would appear a considerable proportion of the staff at the Royal Devon and Exeter Hospital, including some consultants, still hold an outdated understanding that ME has psychological causes."

Ms Boothby-O’Neill’s father, Sean O’Neill, a journalist at The Times, asked Dr Weir whether there was still resistance within the medical profession to ME being a physical illness.

“Until that dogma is properly buried and replaced by a proper scientific understanding of this condition within the medical profession as a whole, we are not going to progress very far with understanding it and being able to treat it properly,” he said.

"There are still plenty of medical professionals out there in the community who are still inherent to the dogma and sadly has a very seriously damaging effect on understanding the true scientific nature of this condition," he added.

The inquest, which is scheduled to last two weeks, continues.