The Care of ME Patients – A National Crisis
The care of Myalgic Encephalomyelitis (ME) patients has been in the spotlight this week following a tragic and avoidable loss in our community.
It is with a very heavy heart that I write this post, reflecting on the devastating passing of Maeve Boothby-O’Neill. Maeve was just 27 years old when she passed away—not just from the disease itself, but from the failings of a healthcare system that neglected her urgent medical needs.
Maeve’s death, resulting from malnutrition due to severe ME, has sparked global conversations about the desperate need for systemic reform in how ME patients are treated.
The Tragic Circumstances of Maeve’s Death
For a decade, Maeve suffered from severe ME, a condition that left her:
🔹 Bedridden
🔹 Unable to eat or drink properly
🔹 In need of constant care
Despite multiple hospital admissions in her final year, Maeve’s urgent medical needs were not met. She was discharged home without adequate support, leading to her deterioration and eventual death from malnutrition.
The coroner’s report ruled her death as due to “natural causes because of severe myalgic encephalomyelitis”, but it also exposed shocking failures in her care:
❌ No proper care plan upon hospital discharge
❌ Lack of access to specialist ME treatment
❌ Medical professionals failing to take her condition seriously
Maeve’s mother, Sarah Boothby, her full-time carer, painfully shared how she watched her daughter starve to deathwhile desperately seeking help from a system that did not intervene.
The NHS’s Failure to Care for ME Patients
Maeve’s case is not an isolated incident—it is part of a wider systemic failure.
🔹 No Specialist ME Hospital Wards Exist
Professor David Strain of the Royal Devon and Exeter NHS Foundation Trust confirmed that no hospital ward in the UK provides the specialist care required for severe ME patients.
🔹 Outdated & Harmful Attitudes in Healthcare
Dr Willy Weir, an ME expert, revealed that some hospital staff blamed Maeve for her condition, a damaging misconception that led to subpar and life-threatening care.
🔹 Lack of Education Among Medical Professionals
The stigma surrounding ME, where it is dismissed as psychological rather than physiological, continues to put thousands of lives at risk.
A Call for Urgent Institutional Change
Maeve’s mother, Sarah Boothby, has called for institutional reform, a plea that resonates deeply with the entire ME community.
🔹 We need specialist ME hospital wards
🔹 Healthcare providers must receive ME-specific training
🔹 ME research funding must increase significantly
🔹 The stigma of ME as a “mental illness” must end
The inquest into Maeve’s death cannot be ignored. The UK government has promised a final delivery plan focusing on research, education, and improved ME care—but promises are not enough.
📢 We must hold them accountable.
What Can We Do? Advocacy & Action
Maeve’s story has touched thousands, and we must turn our grief into action.
Ways You Can Help:
✅ Raise awareness – Share this post & Maeve’s story.
✅ Sign petitions – Push for specialist ME care centres.
✅ Write to your MP – Demand urgent ME healthcare reform.
✅ Support ME charities – Donate or volunteer to drive change.
💙 Every patient with ME deserves dignity, compassion, and proper care. Maeve’s death was preventable, and we must fight for a future where no more lives are lost to medical neglect.
In Memory of Maeve Boothby-O’Neill
Maeve was strong, courageous, and deeply loved. Her loss is felt across the ME community, but her legacy must be one of change.
Her family has shown incredible strength, and I know I’m not alone in expressing my deepest gratitude to them.
🕊️ Maeve will never be forgotten
💙 Resources & Support for ME Patients
🔹 NICE Guidelines for ME Care – Learn how ME should be managed from diagnosis onward.
🔹 Building a New ME Community – A supportive space with resources to help you navigate ME.
💬 If you need someone to talk to, I’m here. 🫂 Click below to reach out.
📢 Let’s demand the change that Maeve, and so many others, deserved.
With love always,
Alisha 🫶
PS – There is still love. There are people who care—even if it’s a stranger at a bus stop or someone reading this blog.
Please, talk to someone. Anyone. It doesn’t have to be perfect or pretty. Just don’t hold it in.
I’m always here if you need to talk. I’m not a professional, but I will always listen.
📧 ask@alishawhittam.com
