By David Tuller, DrPH
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The case of Maeve Boothby O’Neill, who died in 2021 of malnutrition from severe ME after three hospitalizations failed to halt her decline, has received widespread media attention in the UK. In the most recent development, Deborah Archer, the coroner who conducted the inquest into the matter, this week issued what is called a “Report to Prevent Future Deaths,” which she sent to multiple health care agencies. (Here’s Monday’s post, with a copy of the full report.)
Maeve, who was 27 when she died, lived in Exeter, a small university city in the county of Devon in southwest England. The two-week inquest took place at the local courthouse this summer, and Archer issued her factual findings some weeks later. While she found, based on the required standard of evidence, that medical personnel and social service workers bore no liability for Maeve’s death, she did highlight areas of concern that emerged from the testimony and investigation.
In such cases, coroners have the authority to issue the sort of report that Archer released on Monday. In the document, Archer made some stark observations.“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,” the report noted.
The case has become something of a cause celebre in the UK–a rather remarkable state of affairs. After all, patients diagnosed with the illness have been neglected, ridiculed and dismissed for decades, not only by health care professionals but often by employers, friends and even loved ones. One reason for the story’s prominence is that Boothby O’Neill’s father, Times correspondent Sean O’Neill, wrote articles about his daughter after her death. The Times subsequently devoted an extensive amount of coverage to the inquest.
Other media organizations have taken up the issue. These news stories, for the most part, have not included predictable comments from certain prominent psychiatrists and others who have long attributed patients’ devastating symptoms to psychological and behavioral factors rather than pathophysiological dysfunctions. In other words, the journalists covering the issue have generally accepted at face value the notion that ME is a serious disease with potentially fatal consequences. This is certainly a welcome shift. The cabal of clinicians and investigators who once indisputably controlled the narrative in this domain has lost that advantage–at least among professionals at major news organizations who report about these things.
The account published on Monday by The Times was written by chief reporter Fiona Hamilton, who framed the release of Archer’s report as a pivotal event.“In a watershed moment, the coroner in Boothby O’Neill’s inquest issued a prevention of future deaths report on Monday, the first of its kind involving the poorly understood condition of myalgic encephalomyelitis,” wrote Hamilton.
In her report, Archer mentioned some of the glaring systemic gaps revealed through the inquest. These included: “no specialist hospitals or hospices, beds, wards or other health care provision in England for patients with severe Myalgic encephalomyelitis,” “no current available funding for the research and development of treatment and further learning for understanding the causes,” and “extremely limited training for Doctors…especially in relation to severe ME.”
Archer also mentioned the 2021 guidance on ME/CFS from the UK’s National Institute for Health and Care Excellence (NICE); this guidance rescinded previous recommendations from 2007, which focused on psychological and behavioral treatments. In the report, Archer noted that the current document “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 [a separate NICE guidance].”
In severe cases, ME patients can lose the ability to chew, swallow and digest food. But as happened with Maeve and others, hospitals under the National Health Service [NHS] are often reluctant or refuse outright to provide artificial feeding options–even when patients are clearly at risk of starving to death. In the last couple of years, several similar cases in England (and elsewhere) have been spotlighted in public awareness campaigns and multiple news reports.
Archer noted in the report itself that she was sending it to the Department of Health and Social Care, NHS England, NICE, the Medical Schools Council, the Medical Research Council, and the National Institute for Health and Care Research. (The latter two are major research funders; both have a long and sorry history of supporting seriously flawed research that presumes the illness in question is a psychological and behavioral disorder.)
Archer gave the recipients 56 days to respond. “Your response must contain details of action taken or proposed to be taken, setting out the timetable for action,” noted the report. “Otherwise, you must explain why no action is proposed.”
Notwithstanding the demand for a response, Archer herself indicated at a hearing on September 27th that these reports are often ignored and cannot be enforced. Whether anyone in a position of authority takes significant action in this instance remains to be seen.
Many outlets besides The Times covered the story. BBC Radio 4 described Archer’s report and featured interviews with Sonya Chowdhury, chief executive of Action For ME, a major advocacy organization, and Karen Hargrave, a Long Covid patient and co-founder of #ThereForME, a public awareness campaign. BBC Breakfast, a TV show, offered a nine-minute segment with an extensive interview with Sarah Boothby, Maeve’s mother.
The article in The Guardian about the report bore an urgent headline–“Address ‘non-existent’ severe ME care or risk further deaths, UK health minister told”—and included a reaction from Maeve’s dad:
“Boothby O’Neill’s father, Sean O’Neill, a Times journalist, described the report as stark and shocking...‘The report is addressed directly to Wes Streeting [Secretary of State for Health and Social Care] and I urge him to respond in a constructive and meaningful way,’ he said. ‘People with the post-viral illnesses like ME and long Covid have been neglected for too long; if ministers are serious about tackling the problem of long-term sickness they must improve care and treatment for sufferers.’”
The leaders of the NICE committee that developed the 2021 ME/CFS guideline have strongly backed the call for specialist services. In a letter to The Times last week Dr Peter Barry, the committee chair, and Professor Baroness Finlay of Llandaff, the vice chair, wrote:
“We made clear recommendations [in the 2021 guidance] that patients with ME/CFS need specialist services that are empathic, focusing on the individual’s needs, and that research is needed into the diagnosis and management of ME/CFS and its complications. We have been deeply disappointed that the guideline recommendations have not been implemented by those commissioning clinical services, and hope that the coroner’s report will lead to much-needed change.”