The Care of ME Patients
The Care of ME Patients has been talked about a lot in the press this week.
It is with a very heavy heart that I write this blog post today reflecting on the tragic and untimely passing of Maeve Boothby-O’Neill, a young woman from Our Myalgic Encephalomyelitis (ME/CFS) community. Maeve’s life was cut short at just 27 years old, not by the disease alone, but by the failings of a healthcare system that was ill-equipped to manage the complexities of her severe condition. Her death, resulting from malnutrition due to severe ME, has sparked conversations around the world, highlighting the urgent need for reform in how patients with this debilitating illness are cared for.
The Tragic Circumstances Surrounding Maeve’s Death
Maeve’s story is one of immense suffering. For a decade, she battled severe ME, a condition that left her bedridden, unable to eat or drink properly, and in need of constant care. Despite multiple hospital admissions in the final year of her life, Maeve’s needs were not adequately met. She was discharged home, where her condition deteriorated further, ultimately leading to her death from malnutrition. The inquest into her death revealed that while Maeve was seeking help, her cries for adequate care went largely unheard.
The coroner’s report described Maeve’s death as resulting from natural causes “because of severe myalgic encephalomyelitis,” yet it also underscored the significant shortcomings in her care. Maeve’s inability to tolerate food or drink, combined with a lack of a proper care arrangement for when she got home, set things in place for this tragic outcome. Her Mum, Sarah Boothby, who was Maeve’s full-time carer, described the heartbreaking reality that they knew Maeve was starving to death, and yet still the system failed to intervene in a meaningful way.
The Inadequacies of Our National Healthcare System when dealing with Myalgic Encephalomyelitis Patients
Maeve’s death is not an isolated incident but rather a stark reminder of the systemic issues that plague the care of ME patients. The inquest into her death highlighted the absence of specialised hospital wards capable of treating severe ME patients, a deficiency that Professor David Strain of the Royal Devon and Exeter NHS Foundation Trust acknowledged. He stated that no such ward exists in the country that can provide the level of care needed for patients like Maeve.
This lack of specialized care is compounded by the outdated and often harmful attitudes toward ME within the medical community. As Dr Willy Weir, an expert in ME, pointed out, Maeve’s illness was, at times, regarded by hospital staff as her fault, a misconception that tragically influenced her treatment. This stigma, coupled with a lack of understanding of the disease’s complexities, left Maeve vulnerable to inadequate and ultimately fatal care.
A Call for Institutional Change
Maeve’s Mum Sarah has called for “institutional change” in how Myalgic Encephalomyelitis patients are treated, a call that echoes throughout the ME community. It is unacceptable that in a modern healthcare system, patients with severe ME are left to suffer without access to the specialised care they so desperately need. The inquest into Maeve’s death serves as a powerful reminder that the status quo is not good enough.
We need comprehensive reform that includes the establishment of specialized care centres for ME patients, better training for healthcare providers, and a significant increase in funding for ME research. The stigma that ME is “all in the mind” must be eradicated, and the medical community must recognize the very real and often life-threatening nature of this disease.
The Path Forward: Advocacy and Action
Maeve’s story has resonated with people across the globe, and it is our responsibility to ensure that her death is not in vain. We must continue to advocate for change at every level—within hospitals, in government policy, and public awareness. The promises made by government officials, including the commitment to publish a final delivery plan focusing on research, education, and better care for ME patients, must be met with swift and decisive action.
Every patient with ME deserves to be treated with dignity, compassion, and the highest standard of care. Maeve’s death was preventable, and it is a stark reminder that we must do better. The ME community will not rest until meaningful change is achieved so that no more lives are lost to the failings of our healthcare system.
In Memory of Maeve
Maeve Boothby-O’Neill’s life was one of immense courage and resilience, and her death is a profound loss for all who knew her and for the ME community as a whole. Let us honour her memory by continuing to fight for the changes that we so desperately need. Maeve’s story should serve as a catalyst for a new era of understanding, compassion, and care for those living with Myalgic Encephalomyelitis. We must ensure that her legacy is one of progress and hope for all who suffer from this devastating illness.
My final words have to be about Maeve’s family and the impeccable way they have carried themselves throughout all of this I know that I won’t be the only person in our community who is truly thankful for them.
Maeve will never be forgotten 🫶
Thank you for reading,
Love always
Alisha 🫶
The NICE Guidelines rule out the way The Care of ME Patients should be handled from Diagnosis onwards. Worth reading if you or someone you know has Myalgic Encephalomyelitis
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