“The inquest heard that provision of care for patients with severe ME such as that which Maeve suffered from was and is nonexistent and that being placed on a ward that did not have expertise in her condition made her admission to hospital very difficult for her to endure,” said Archer, assistant coroner for the county of Devon, Plymouth, and Torbay.
She added, “During the course of the evidence it became clear that there were no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe myalgic encephalomyelitis (ME). This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her.”
It also became clear, Archer said, that “there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME” and “extremely limited training for doctors on ME/CFS and how to treat it—especially in relation to severe ME.”
In addition, the 2021 NICE guidance on ME did not provide “any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.”
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