Maeve Boothby O'Neill
7 Oct 2024 · Coroner Deborah Archer · Devon, Plymouth and Torbay
The coroner's concerns
1. lack of specialist hospitals or hospices for severe ME
“During the course of the evidence it became clear that there were no specialist hospitals or hospices, beds, wards or other health care provision in England for patients with severe Myalgic encephalomyelitis (ME).”
2. lack of funding for ME research
“During the course of the inquest it became clear that there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME / Chronic Fatigue Syndrome (CFS)”
3. limited doctor training on ME
“During the course of the inquest it became clear that there was extremely limited training for Doctors on ME/ CFS and how to treat it - especially in relation to severe ME.”
4. absence of detailed NICE guidance for severe ME management
“During the course of the inquest it became clear that the 2021 NICE guideline 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.”