NHS to review services for ME patients after young woman's death

The NHS is carrying out an assessment of myalgic encephalomyelitis (ME) services across England after the death of Maeve Boothby O’Neill, whose case highlighted a lack of understanding and inability to care for sufferers of the illness.

The National Institute for Health and Care Excellence (Nice), which provides advice to improve healthcare, is also re-examining its guidance on feeding support for people with severe ME.  The education of medical professionals about patients, who have often been stigmatised, is also being enhanced.

It comes after the landmark inquest of Boothby O’Neil, who died aged 27 in 2021 after suffering from ME since being a teenager. Her case highlighted misunderstandings of ME, also known as chronic fatigue syndrome, and the lack of treatment available for severe sufferers.

Boothby O’Neill, the daughter of Sarah Boothby and Sean O’Neill, a senior Times journalist, was left bed bound, unable to speak and malnourished.

She begged for help to eat when she became so fatigued that her body shut down but doctors were unable to treat her illness, despite three admissions to the Royal Devon and Exeter Hospital in 2021. She chose to die in her home “in the care of those she loved” rather than in hospital.

At an inquest into her death, Devon, Plymouth and Torbay coroner, Deborah Archer, issued a  prevention of future deaths report (PFD), the first of its kind for ME. She called on Wes Streeting, the health secretary, NHS officials and other health bodies to take urgent action to address the “non-existent” care and the lack of funding for research.

Responding to the coroner, national medical director of NHS England, Sir Stephen Powis,  said that a “stocktake of existing CFS/ME services in England is being undertaken as an initial step.”

Professor Powis said the review of services was the first step and that a specific working group had also been set up to determine if extra support was required.

Nice will also review the evidence on dietary management and strategies such as tube feeding for patients with severe ME, to examine whether its guidelines need amendments. 

Meanwhile, medical schools are being encouraged to provide undergraduates with direct patient experience of ME, and an NHS e-learning package about the condition will be promoted to all of them. 

An interim delivery plan, to improve the experiences and outcomes for people with ME, is due to be published soon although it has been subject to repeated delays.

Sean O’Neill has campaigned for years about the neglect shown to ME patients, the scepticism by some medical professionals and the “woeful” lack of research funding.  He said: “It is a positive sign for ME sufferers that all these public bodies have listened to the coroner and responded to her findings.

“However, the actual responses are lacking substance. There is no sign that anything will be done to tackle the coroner’s main concern that care provision for people with severe ME is ‘non-existent’ in the NHS.

“And it was upsetting to hear that the Department of Health’s delivery plan on ME appears to have been delayed again until March 2025, almost three years after work on it started when Sajid Javid was health secretary.”