Drops From The Well of Suffering: Honoring Maeve Boothby O’Neill
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Listen to this post read aloudThis 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.
And while I am alive, I am still extremely limited and fragile; Most of the things my soul yearns for would kill me and many of the things I try to do from bed make my health much worse. And yet in working on these advocacy projects, I have actually managed to find meaning and purpose in my life, trying to give a voice to the patients who have lost their own. It is not the life I dreamed of, but in the big picture of things, I am doing what I always wanted to do, just in a drastically different way. There is still life affirming beauty, meaning and purpose even in the most severe ME/CFS patient’s life. The simple act of survival is an act of defiance against a world that wishes nothing more than for us to go away.
The following is a slightly edited version (because it is now for a worldwide audience) letter that I sent to the Coroner for Maeve Boothby O’Neill’s death to try to help the coroner understand that Maeve died from a lack of easily providable and completely available care. And that all of her doctor’s endless excuses and reasons for not providing this care expressed in the Inquest are the words of ignorance, prejudice and arrogance and nothing more. Every sentence in this letter addresses an excuse NHS Hospital Doctors made in the Inquest for Maeve's death from not getting food in a way that would give her the nutrition and fluids she needed to live.
Dear Ms. Archer,
[I would like to offer a reality check to the NHS doctors who cared for Maeve on the real world risks of tube feeding.] I am sick with a similarly severe case of ME/CFS to Maeve Boothby O’Neill with very similar symptoms. I have had a PEG/J tube for over 8 years, since January 8, 2016. Every single day I pump food (formula) into the J part of the tube and inject 45cc of pureed food into the G part of the tube to make sure my stomach does not atrophy. I can not tolerate pumping even a small amount of food into the G tube.
I often have the food pump running into the PEG/J tube for 12 hours at a time or more, it makes no difference how long I have food pumping, my symptoms and state of health is the same with the food pump on or off. I always lay flat when food is being pumped into me and laying flat has never, not once been an issue or even caused any nausea or discomfort. Not once. The tube has never pulled out, or gotten curled up, and I have never aspirated. It has also never gotten infected and I go days between cleaning it with hydrogen peroxide and also cannot change my bottom sheet more than once every few months, so it is not in a very sterile environment. Yet the tube has, for over 8 years, been completely fine, with no hint of infection or bad bacterial growth of any kind.
Every few months I have to go to the hospital to get the J-tube changed. I have to get a gurney transport to get there because I am not able to walk or move to a wheelchair, but gurney transports are readily available. The hospital is very accommodating. They give me a private room and allow me to keep the lights off and cover the computer and LED’s on the equipment with towels. They don’t speak with me, but instead ask my mother all questions outside the room with the door closed. My treatment is consistent with the NICE guidelines and they are very respectful of my condition. With their accommodations along with the help of the drug Lorazepam (Ativan), I am not harmed by these trips. They are temporarily exhausting but my condition does not worsen for more than a week. If I did not receive the gurney, the accommodations by the hospital, and Lorazepam, I would likely not recover from just a single trip to the hospital.
Before the PEG/Jtube I had TPN through a PICC line for 18 months. I never got sepsis, but I did get a few infections. They were treated with antibiotics and I got over the infections in a matter of days and returned to my previous state of health with no damage or long term consequences. The PICC line was installed at home, and when it needed changing, it was changed at home as well. The blood sugar checks needed for TPN feeding take only a few seconds and happened without me hardly noticing. They never caused distress or stress nor did they make my symptoms worse in any way. And after my body stabilized, I no longer needed to have blood sugar tests at all anymore. My parents were trained on how to change the bandage and they do it while I'm wearing earmuffs and an eye mask so that it does not cause overstimulation that would make my health worse. The earmuffs and eye mask I use are readily available all over the world including in the UK. Changing the bandage does not cause me harm in any way. It takes an hour maximum and has never been an issue.
I still have the central line for IV fluids for hydration and haven't had an infection in many years. As mentioned above, my caregivers can’t change my sheets very often because of how much energy it takes me to tolerate. So sometimes the bottom sheet was not changed for months. Yet the issue of PICC line hygiene was managed fine in a non sterile environment. There are sterile caps you can put on the ports that prevent anything getting in, in addition to a lock on the ports themselves.
It is a travesty that Maeve did not receive nutrition like I received. I was just as sick as Maeve with very similar symptoms, including sensitivity to stimuli like light, sounds, voices and the company of other people in my room and like Maeve, I could not eat enough food to survive. If I was treated the way Maeve was treated, I would be dead just like Maeve. Luckily, I had doctors who viewed ME/CFS as the serious physiological disease that it is, and who understood that the risk of needing to take antibiotics occasionally or add a few extra steps to my daily routine was better than the certainty of death from starvation, dehydration or malnutrition, which is what killed Maeve. Maeve just needed a way to get nutrition into her body. I got TPN and lived. Maeve was denied TPN and died.
Thank you for your time and for caring about Maeve’s case.
Sincerely,
Whitney Dafoe
https://www.whitneydafoe.com/mecfs/patients/maeve/letter_and_images_of_whitney_dafoe.zip
^ Link to download this letter in various file formats and 8 photographs of me lying flat *while being fed through a J-tube* posted in the public domain between 3/9/2021 to 8/20/2021 while Maeve was alive and in NHS care.
[I would like to offer a reality check to the NHS doctors who cared for Maeve on the real world risks of tube feeding.] I am sick with a similarly severe case of ME/CFS to Maeve Boothby O’Neill with very similar symptoms. I have had a PEG/J tube for over 8 years, since January 8, 2016. Every single day I pump food (formula) into the J part of the tube and inject 45cc of pureed food into the G part of the tube to make sure my stomach does not atrophy. I can not tolerate pumping even a small amount of food into the G tube.
I often have the food pump running into the PEG/J tube for 12 hours at a time or more, it makes no difference how long I have food pumping, my symptoms and state of health is the same with the food pump on or off. I always lay flat when food is being pumped into me and laying flat has never, not once been an issue or even caused any nausea or discomfort. Not once. The tube has never pulled out, or gotten curled up, and I have never aspirated. It has also never gotten infected and I go days between cleaning it with hydrogen peroxide and also cannot change my bottom sheet more than once every few months, so it is not in a very sterile environment. Yet the tube has, for over 8 years, been completely fine, with no hint of infection or bad bacterial growth of any kind.
Every few months I have to go to the hospital to get the J-tube changed. I have to get a gurney transport to get there because I am not able to walk or move to a wheelchair, but gurney transports are readily available. The hospital is very accommodating. They give me a private room and allow me to keep the lights off and cover the computer and LED’s on the equipment with towels. They don’t speak with me, but instead ask my mother all questions outside the room with the door closed. My treatment is consistent with the NICE guidelines and they are very respectful of my condition. With their accommodations along with the help of the drug Lorazepam (Ativan), I am not harmed by these trips. They are temporarily exhausting but my condition does not worsen for more than a week. If I did not receive the gurney, the accommodations by the hospital, and Lorazepam, I would likely not recover from just a single trip to the hospital.
Before the PEG/Jtube I had TPN through a PICC line for 18 months. I never got sepsis, but I did get a few infections. They were treated with antibiotics and I got over the infections in a matter of days and returned to my previous state of health with no damage or long term consequences. The PICC line was installed at home, and when it needed changing, it was changed at home as well. The blood sugar checks needed for TPN feeding take only a few seconds and happened without me hardly noticing. They never caused distress or stress nor did they make my symptoms worse in any way. And after my body stabilized, I no longer needed to have blood sugar tests at all anymore. My parents were trained on how to change the bandage and they do it while I'm wearing earmuffs and an eye mask so that it does not cause overstimulation that would make my health worse. The earmuffs and eye mask I use are readily available all over the world including in the UK. Changing the bandage does not cause me harm in any way. It takes an hour maximum and has never been an issue.
I still have the central line for IV fluids for hydration and haven't had an infection in many years. As mentioned above, my caregivers can’t change my sheets very often because of how much energy it takes me to tolerate. So sometimes the bottom sheet was not changed for months. Yet the issue of PICC line hygiene was managed fine in a non sterile environment. There are sterile caps you can put on the ports that prevent anything getting in, in addition to a lock on the ports themselves.
It is a travesty that Maeve did not receive nutrition like I received. I was just as sick as Maeve with very similar symptoms, including sensitivity to stimuli like light, sounds, voices and the company of other people in my room and like Maeve, I could not eat enough food to survive. If I was treated the way Maeve was treated, I would be dead just like Maeve. Luckily, I had doctors who viewed ME/CFS as the serious physiological disease that it is, and who understood that the risk of needing to take antibiotics occasionally or add a few extra steps to my daily routine was better than the certainty of death from starvation, dehydration or malnutrition, which is what killed Maeve. Maeve just needed a way to get nutrition into her body. I got TPN and lived. Maeve was denied TPN and died.
Thank you for your time and for caring about Maeve’s case.
Sincerely,
Whitney Dafoe
https://www.whitneydafoe.com/mecfs/patients/maeve/letter_and_images_of_whitney_dafoe.zip
^ Link to download this letter in various file formats and 8 photographs of me lying flat *while being fed through a J-tube* posted in the public domain between 3/9/2021 to 8/20/2021 while Maeve was alive and in NHS care.
I have lived many rewarding years of life and one day will live a full healthy life when a cure is found because my doctors had a simple procedure performed in my home that took a few hours, did not worsen my health, and in the following years also did not worsen my health or cause any serious complications.
Maeve Boothby O’Neill died not because her stomach stopped accepting food (severe gastroparesis, a well known condition), or because her doctors did not know how to treat severe gastroparesis (they did). Maeve died because she had ME/CFS as well as severe gastroparesis, and in the context of ME/CFS, suddenly her doctors had no idea what to do, blamed everything except her stomach including psychosomatic causes, made only one attempt to feed her using an NG tube set at 3 times the rate she had previously used, which caused serious complications and so had to be removed. In 3 trips to the hospital, Maeve’s doctors never tried a whole range of well known treatments for severe gastroparesis including NJ, PEG, PEJ, and TPN. If Maeve had any other illness, cancer for example, she would have been given whichever of these treatment options that worked for her in a matter of days, likely within 1 day. All of these treatments are 1 hour procedures that require no overnight stay. Only TPN requires any outpatient care, and that can be easily done at home by a visit from a nurse, or simply a trained caregiver or parent.
ME/CFS did not kill Maeve. Neglect, ignorance, prejudice, arrogance and broad systemic failure killed Maeve.
ME/CFS is seen with such disregard, with so little understanding and so much prejudice that basic care for health issues even unrelated to ME/CFS that are treated with ease when present in other illnesses often cannot be treated properly when present in an ME/CFS patient. Because when someone has any other illness, the medical system functions and doctors are focussed on stopping certain death, not questioning the patient’s illness.
Maeve Boothby O’Neill did not die from ME/CFS, Maeve died because she had ME/CFS.
Love,
Whitney