After decades battling severe ME/CFS and systemic lack of support, Marcia Doherty – known online as “Madeline” – is going fully public in a desperate bid to secure her survival and fight for change. It comes amid her being approved for assisted suicide in Canada – something she doesn’t actually want at all.
Marcia – living with ME/CFS
Marcia lives with myalgic encephalomyelitis (ME/CFS), a debilitating condition often triggered by viruses, which can rival cancer and late-stage AIDS in severity.
It’s a chronic systemic neuroimmune disease which affects nearly every system in the body. As a result, it causes a range of symptoms that hugely impact patients’ daily lives. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.
In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.
At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.
Despite all this, the illness is under-recognised in British Columbia’s medical system. Specifically, it lacks an Medical Services Plan (MSP) category of coverage. Essentially, this is British Columbia’s public health insurance scheme. It means that the state is leaving Marcia without critical care.
Assisted dying before assistance to live with ME/CFS
As a result, it has forced Marcia into $45,000 medical debt. Given this, Marcia has had to rely on crowdfunding to survive. Her health has deteriorated to the point the state has approved her for Medical Assistance in Dying (MAiD). However, Marcia wants to live despite the severe ME/CFS.
As the name suggests, MAiD is Canada’s medically assisted suicide programme. It first legalised the practice in 2016 for adults with terminal diagnoses. However, it has since expanded this out to disabled with non-terminal conditions who experiencing “intolerable physical or psychological suffering”.
It has led to harrowing stories of chronically ill and disabled people turning to MAiD due to poverty, homelessness, and a lack of quality available healthcare. So naturally, it’s extremely concerning Marcia has been approved for this, while the Canadian healthcare system continues to utterly fail her.
Marcia explained the abysmal support and care situation for people living with ME in Canada:
For years, I’ve fought to stay alive and advocate for my community.
Yet over and over I’ve been told there’s no route to adequately help people like me – no human rights recourse, no legal pathway to address the systemic neglect of my illness.
I’ve worked with the medical community, government ministries and legal experts, and been told that coverage for ME is a political decision. Well, political change only happens when there’s public awareness – which is why I’m sharing my story.
It’s not just Marcia, its a worldwide problem for ME/CFS
Alarmingly, what Marcia has described about the appalling lack of care for people living with ME/CFS isn’t isolated to Canada either.
In the past year alone, the Canary has covered the stories of multiple ME patients. In the UK, the NHS has abused, neglected, and sectioned patients like 18-year-old Millie McAinsh and 24-year-old Carla Naoum. From Australia, we spoke to severe ME patient Anna. She is still without support or care to leave an abusive household.
There’s 29-year-old Nevra in Pakistan too. Like Marcia, she has had to fundraise for care – and is currently doing so for urgent endometriosis surgery. Meanwhile, a hospital in New Zealand forced 34-year-old severe ME patient Rhiannon into an ‘aged care facility’ as the government has no provision in place to support her elsewhere.
It’s a disgraceful state of affairs that governments globally are denying ME patients like Marcia the support they need. Moreover, the British Columbian state’s authorisation of an assisted death for Marcia, before funding adequate care, should send alarm bells ringing.
It speaks to a broader problem around cost-cutting capitalist governments. That is, how they are more prepared to sanction medically assisted suicide than proper funding for research, healthcare, welfare, and social support.
Marcia speaking out for ME patients in Canada
Marcia is bravely speaking up for people living with ME/CFS in Canada. In British Columbia alone, the condition affects at least 87,000 people.
Medical professionals have warned Marcia that public pressure could damage her fragile health further. But she hopes that going public will spur much-needed action. She has launched a petition calling for better recognition, care, and support for ME.
People can support Marcia’s petition, both in Canada and internationally, and learn about her fight here.
They can also learn more about her story via her video announcement, podcast and YouTube channel, and support her crowdfunding campaign.
Featured image via screengrab
