As Maeve Boothby O’Neill’s inquest approaches its conclusion with the coroner's verdict expected today (9th August 2024), an American sufferer, Whitney Dafoe, wrote to Deborah Archer (coroner) and yesterday, The Times newspaper shared his letter in an article. We have taken extracts from Whitney's blog which also featured the letter....
**Trigger Warning: Upsetting Content**
“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.”
By Whitney Dafoe
Extracts from Whitney's Blog
“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 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…
“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…”
MEA Comment: Aripiprazole (trade name = Abilify)
“Whilst there are some interesting reports of benefit, there are also some very disturbing reports from people who have experienced a bad reaction to this drug.
“We need evidence on both safety and efficacy from well conducted clinical trials – including dose response studies – before any conclusions about the possible use of Aripiprazole in ME/CFS can be made.
“In our current state of knowledge, and in the absence of information on safety and efficacy from clinical trials in relation to MECFS, this is not therefore a drug that should be prescribed for the treatment of ME/CFS outside a clinical trial.
“More information and the full comment on the medication Aripiprazole (trade name = Abilify) can be found here.”
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
