Trial By Error: Whitney Dafoe and Naomi Whittingham Reflect on Severe ME and the Inquest into the Death of Maeve Boothby O’Neill

By David Tuller, DrPH

*I originally wrote “Whittington” instead of “Whittingham.” I apologize for the error.

On Friday, August 9th (tomorrow), Deborah Archer, the coroner who presided over the inquest into the death of Maeve Boothby O’Neill, will issue her findings of fact. Following that, she has tentatively scheduled another day of testimony on September 27th. The testimony during the two-week inquest, held in Exeter, England, UK, revealed starkly that the National Health Service consultants at the Royal Devon and Exeter Hospital had little or no idea what was wrong with Maeve and how to address it. The hope is that Archer will issue a set of tough recommendations to help ensure that such situations no longer occur.

The press coverage was extensive and largely sympathetic. ME Research UK has compiled a helpful compendium of quotes from the nine days of testimony and links to coverage in The Times, The Guardian, BBC, and many other news outlets, with highlights from the first week presented here and the second week here. Some patients have also commented on the events in moving posts of their own.

**********

Whitney Dafoe: “I received TPN and lived, Maeve was denied TPN and starved to death.”

In a post today to mark Severe ME/CFS Awareness Day, Whitney Dafoe discusses how tube-feeding kept him alive while Boothby O’Neill was unable to successfully access this form of treatment. Dafoe is the son of renowned Stanford geneticist Ron Davis, who has devoted himself to finding answers to the illness; Dafoe’s story has been the subject of a book called The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son. In today’s post, Dafoe includes the text of the letter he sent to the coroner about the contrast between his and Maeve’s situations. Here is the first half:

“This Severe ME/CFS Awareness Day comes the day before the Coroner publishes her findings from the Inquest into the death of Maeve Boothby O’Neill in the UK. Which means doctors were giving evidence in the Inquest a week before the death of Sophia Mirza, the severe ME/CFS patient who died on this day in 2005 and is why we honor Severe ME/CFS patients on this day.

“Today I want to shed light on two stories of severe ME/CFS that speak to the profound fragility, vulnerability and helplessness that Severe ME/CFS patients face. And in doing so I wish to honor the life of Maeve Boothby O’Neill and her tragic, entirely preventable death on October 3, 2021.

“The first story is my own. I am a patient who is extremely severe, but has enough support from family and doctors to not only survive, but after the seeming 60th treatment I tried – Abilify – in this long battle for life, I am now also able to write and engage in creative expression. And yet even with this support, I still crash and get worse doing things like writing a letter to Maeve’s Coroner (shown below) from bed. I still suffer every day from a life so limited that all of my former dreams, goals, aspirations and loves are out of reach. And yet I find profound meaning and purpose in creative projects I can work on in bed, and even more so from helping spread awareness about Severe ME/CFS because I am one of very few people in the world who knows the most severe form of ME/CFS from personal experience and am also able to express that reality to the world. If I don’t act, there are few others who know this reality who can. Because most patients who are ever this severe are lost either to isolation, silence, and darkness, or death.

“The second story unfolded in the UK where a young woman named Maeve Boothby O’Neill, a bright, creative, witty woman with a gift for writing, developed ME/CFS at age 14. Maeve had so much to give to this world. Like me, Maeve found ways to follow some version of her dreams within the confines of an extremely limited life. She started the first in a series of promising novels called “The Alchemists” from bed. But she was never given a chance to finish them. Her condition steadily progressed to extremely severe and she eventually deteriorated into a very similar state to my condition when I was at my worst for 7 long years before Abilify. But our stories diverge due to a drastic difference in the care we received; Not from our loved ones or caregivers, but from the different cultures of medicine we live in.

“When my stomach stopped tolerating food or water, I started starving to death. I lost 35 lbs (16kg), leading to a body weight of 115 lbs (52.1kg) and I am 6’3” (190.5cm) tall . But my doctors stepped in and got me Total Parenteral Nutrition (TPN) in time to save my life. In the Uk, Maeve went to the hospital three times in 2021 trying to get a feeding tube because she was also starving due to an inability to eat and she could not get care at home like I was able to. Yet the NHS hospitals she went to would not and could not give her proper care and she always returned home due to not receiving the feeding tube she needed to survive, while simultaneously deteriorating much faster in the hospital setting which is a nightmare for any severe ME/CFS patient.

“Maeve went to the hospital for a third time out of hope to get a feeding tube installed so she could live. She had seen photographs of me laying flat in bed with a Jtube and knew it was possible for her to get the nutrition she needed to live. Maeve wanted to live and fought to live until the very end. Yet even in dire starvation, Maeve was denied the exact same treatment that saved my life and for bogus, ignorant reasons. For example, NHS Doctors claimed that she would aspirate, that a Jtube line would get kinked in bed and not function, that caring for a PICC line for TPN at home would be too dangerous due to infections in a non sterile environment or that the nurse coming to change the PICC line bandage would cause her too much distress, or that an NJ or PEJ tube could not be tolerated lying down flat in bed, and many, many more excuses which I address below. Despite Maeve and her parents’ desperate attempts to get the hospital to act, she finally, slowly and excruciatingly starved to death in front of her loving parents’ frantic, helpless, crying eyes, despite every effort being made by Maeve’s GP, and in front of a host of NHS hospital doctors and social workers who stood by and watched without taking action.

“I received TPN and lived, Maeve was denied TPN and starved to death.“

Read the rest, including the text of Whitney’s letter to coroner Archer, here.

**********

Naomi Whittingham: “Why Maeve’s Death Must Bring Change”

For years, Naomi Whittingham has shed light on what it is like to have severe ME in the UK in her eloquently written blog, A Life Hidden. Like Maeve, Whittington first fell ill in 1990, just before she turned 13. She has now lived with the illness for more three decades. This week, she published a post called “Why Maeve’s Death Must Bring Change,” in which she reflects on the long history of poor treatment for those with ME in similarly dire straits. Here is the first half:

“Maeve Boothby O’Neill was a young woman with great hope for the future and a wish, in her own words, “to advance the cause of human flourishing.”  She was a gifted writer working on her first novel, and a treasured daughter and sister.  It is her family’s wish that she should be remembered primarily for the light that she brought to the world; for her warmth, her intelligence and her determination.  She was brimming with potential. 

“Maeve died on 3rd October 2021, aged 27, after many years of suffering from severe ME.  I never had the privilege of knowing her personally but, thanks to the extraordinary efforts of her parents to bring her story to light, her name is one that will remain with me always.  Over the past two weeks, an inquest into her death has been held at Exeter Coroner’s Court, with proceedings covered extensively by the mainstream UK media, including the BBC, The Guardian, The Daily Telegraph and The Times.  (ME Research UK have compiled a list of media coverage here and here.)  For my own wellbeing I have had to limit the number of reports that I have read, and I have not felt able to join the inquest online.  I am grateful to all those from the ME community who have done so, and who have demonstrated their support to Maeve’s parents in this way. 

“The inquest has been told that Maeve died of starvation when she lost the ability to eat and failed to receive the nutritional support that she needed.  At the end of this week, the coroner will deliver her verdict on the circumstances that led to the death of a young woman who desperately wanted to live.  “I don’t understand why the hospital didn’t do anything to help me when I went in.  I am hungry.  I want to eat … Please help me get enough food to live,” Maeve wrote to her GP, who appears to have done all she could to help, and to have shared the family’s dismay when Maeve was repeatedly discharged from hospital.  Maeve’s parents, Sarah Boothby and Sean O’Neill, strongly believe that her death was “wholly preventable,” and that the hospital failed in its duty of care.  ME expert Dr William Weir, who attempted to advise the hospital on ways of safely feeding a severe ME sufferer, told the inquiry that “her illness was regarded by some of the Royal Devon and Exeter staff as her fault” and that they believed that her immobility “was self-inflicte

“The desperate situation in which Maeve found herself will be painfully familiar to almost everyone who has lived with severe ME.  Malnutrition is a common complication of the illness, and formed a significant part of my own experience for many years.  The causes are usually multi-faceted and can include severe weakness in the muscles required for chewing and swallowing, nausea and vomiting, severe pain, and in some cases paralysis of the stomach and intestinal failure.  Maeve, like many before and after her, found herself in the terrifying position of being unable to consume enough nutrients to sustain life, while being treated by professionals who were unable – and in many cases unwilling – to grasp the severity of her illness.  

“The desperation of Maeve and her mother as they pleaded with professionals to help is almost unbearable to contemplate.  By the end of her life, Maeve was unable to sit up or speak, and was doubly incontinent.  As Sarah struggled to cope with caring alone for someone so seriously ill, she made repeated phone calls in search of help.  None was forthcoming.  Maeve’s GP said that she had ‘never seen anyone so poorly treated by the NHS.'”

Read the rest here.