On a warm Saturday afternoon in May, Madeline was watching her friend’s young daughter open her birthday gifts. But as the girl sat under a tree in the park, tearing wrapping paper off a book about drawing horses, Madeline’s heart was breaking. “I don’t know if I will get to see her next birthday.”
Madeline has been preparing for medical assistance in dying, or MAID, for over a year, and says she could choose to die as soon as late July if she does not come up with the money to cover treatments for her complex mitochondrial and post-viral conditions.
Myalgic encephalomyelitis/chronic fatigue syndrome is a multisystem disease that affects patients in myriad ways, leaving many with profound fatigue, cognitive and mobility challenges, trouble sleeping and in extreme pain. It can impact nearly all systems in the body, including respiratory, muscular, nervous and immune systems.
Madeline says naturopathic intravenous injections of vitamins that make her life “less horrifying” could allow her to continue living. But B.C.’s Medical Services Plan doesn’t cover most naturopathic services, and she can’t afford them on her own. The treatments and home supports like cleaning and cooking help she needs to live “not in agony” would cost about $100,000 per year, she estimates.
With relatively low funding levels for ME/CFS research, few specialized clinics and little coverage for emerging treatments that can help some patients, Madeline says B.C.’s medical system doesn’t properly recognize her illness, which affects about 77,000 British Columbians.
“Nothing in life is fully enjoyable, because the death clock beats on in my life, and it just never had to be this way,” Madeline told The Tyee.
She can’t afford the necessary treatments on the $1,358 she receives per month as disability assistance, nor the support she needs with housework and personal care. But her diminished quality of life qualifies her for MAID.
“They would rather see me die than recognize my illness and pay for the treatments that keep me alive,” said Madeline. “My death is no more inevitable than a diabetic’s who can’t get insulin.”
Dr. Lucinda Bateman is medical director of the non-profit Bateman Horne Center in Salt Lake City, Utah, where she treats ME/CFS patients and conducts research. She said diagnosis and support for ME/CFS patients are often delayed because the symptoms are varied and can seem unrelated.
“The diagnosis of ME/CFS really doesn’t come to mind in the beginning, because most people are just trying to cope or, you know, get over a flu syndrome,” said Bateman. “Sometimes a lot of time has gone by before anybody, or any medical provider starts to say, ‘Could it be ME/CFS?’”
Vancouver is home to one of Canada’s three ME/CFS clinics, and a fourth is coming soon to Montreal.
But Alain Moreau, head of the Viscogliosi Molecular Genetics Laboratory of Musculoskeletal Diseases at the University of Montreal-affiliated CHU Sainte-Justine hospital, notes that there are about six specialists in the country and 600,000 people living with ME/CFS.
“It’s like having 100,000 patients, and you’re never going to be able to get to all of them,” he said.
Patients will often diagnose themselves long before they receive an official diagnosis from a physician, who often “don’t know or are not familiar with ME/CFS or how to manage it,” Moreau said. “And like many chronic illnesses, it’s harder to manage something that you can’t readily cure.”
After two extended and severe bouts of mononucleosis, first as a child and then as a young woman, Madeline eventually developed ME/CFS, which is a facet of her chronic post-viral syndrome.
Little is known about how or why certain viral infections can trigger ME/CFS, but even common viruses like Epstein-Barr can lead to the condition in 10 per cent of patients. Research is being conducted into how changing stressors, immune functions and potential genetic links may cause ME/CFS.
The condition’s effects ended Madeline’s ability to work more than two decades ago, and she lives with chronic pain and fatigue. (The Tyee has used a pseudonym to protect her privacy.)
Madeline is a trained actor and playwright who works as a volunteer to build bridges between able-bodied and disabled communities. She is a self-described “nerd girl” who loves long Skype calls with friends from her online communities around the world as much as Vancouver’s cherry blossom season.
But when she couldn’t find answers, recognition for her illness or funding to pay for treatments, her artistic ambitions were pushed aside.
Bateman said that’s a common experience for ME/CFS patients.
“Their world gets smaller and smaller as they gradually learn what they need to do to manage symptoms,” she said, which could be anything from avoiding large crowds and bright lights to sleeping most of the day.
Madeline now faces more than two dozen health obstacles, from allergies to edema, a permanent swelling in her body, while living in Vancouver on sub-poverty disability assistance. Her health conditions have worsened and grown in number from around a dozen in her teen years, she said, and now interact with one another in ways that can be catastrophic.
Bateman said the multisystem nature of ME/CFS means every patient experiences complications differently, and even routine medical care for a broken arm or infection needs to take into account a patient’s diagnosis. The lights, sounds and crowds of a hospital can make things far worse.
A connection to long-COVID
The silence and stigma around disability and chronic illness is exactly what Madeline and two Vancouver journalists want to challenge in a new collaborative podcast taking listeners through the centuries of ableism, misogyny and medical reluctance that leave Madeline and others with post-viral syndromes without recognition or relief.
“With post-viral conditions, there is a really critical window where we can course correct and save people from worsening health if it’s caught early,” said Madeline. “I could have been even more stable instead of at my current level of deterioration if my treatments were funded 10 years ago.”
Bateman and Hilary Robertson, co-chair of the ME/FM Society of BC, agree it’s critical patients who get help and stay within their “energy envelope” in the first two years after developing the illness.
But they say it takes an average of five years to get a diagnosis of the challenging disease, and patients often run themselves ragged trying to find relief in the meantime, worsening their outlook.
“It’s this catch-22: they don’t diagnose you early enough, then they say if you get diagnosed early enough, you might get better and have a better quality of life,” said Robertson, who lives with ME/CFS.
The podcast’s title, “I Am Madeline,” is both an introduction and a reality for the audience to ponder.
Helping people understand the illness is especially important now, the podcast team says, as a growing number of COVID-19 “long-haulers” face similar challenges from post-viral symptoms. About 80 per cent of people with “long COVID” are estimated to meet the criteria for post-viral syndrome. Dr. Anthony Fauci, who’s headed the U.S. pandemic response, has said long COVID appears to be similar — or perhaps the same — as ME/CFS.
New evidence from the United Kingdom suggests about six per cent of people who had COVID-19, or more than two million in the U.K., are long-haulers.
Moreau estimates anywhere from 10 to 30 per cent of those two million will develop some form of ME/CFS. Bateman’s Utah clinic has already begun treating long-COVID patients. And advocates hope that the attention — and funding — for research on long COVID will help people with ME/CFS.
The podcast hopes to bring attention to the oft-ignored set of conditions before it is too late for Madeline and millions of new patients with similar symptoms to get help.
“It was the case for me, and for many long-COVID survivors too, that the longer they remain untreated, the lower the probability they recover,” said Madeline.
Bateman and Moreau noted new research, with a focus on people who recently developed the illness, could provide needed answers and help with diagnosis.
“The biggest crisis, of course, is not having medical providers to just recognize this illness and intervene early,” said Bateman.
Telling her story
The podcast was born not just of Madeline’s desire to save her own life, but also to prevent others from experiencing the same neglect that she says leaves her with no choice but to prepare to die.
Madeline was reluctant but decided to participate after speaking to a close friend and realizing she doesn’t want to die “even more than I don’t want to do the podcast, that I don’t want to do the GoFundMe, that I don’t want to have to bare my soul and beg for my life.”
Podcast host Ash Kelly first covered Madeline’s story for Vancouver’s News 1130 radio stations last summer. Her report, combined with a second article in December, directed enough attention to Madeline’s ongoing GoFundMe campaign that she was able to withdraw some money to help pay for treatments and support for the last six months, combined with going further into debt.
The Ministry of Social Development and Poverty Reduction said in a statement that “it is deeply upsetting to hear that this person is so distressed that they feel assisted dying is their only option.” Kelly reported the minister, Nicholas Simons, had offered to speak with Madeline directly.
“No one should feel like they have to make a choice to live or die based on their finances,” the statement read.
A government spokesperson said it was “aware of the challenges faced by those with myalgic encephalomyelitis/chronic fatigue syndrome.” The spokesperson said people on disability assistance can access funding to improve their nutrition and fund some health needs.
After nearly three decades of illness, Madeline worries no one listening to the podcast sees how much she was robbed of, or the fact that she is a person who matters and builds her community today.
Robertson of the ME/FM Society of BC says a sense of loss is familiar to people with the illness.
“Many patients are unable to work and so, you know, it interrupts their career, it interrupts their education, and it decreases their finances, and many are on disability and they simply cannot support themselves or get better,” said Robertson. National advocacy programs refer to the “missing millions” of ME/CFS patients, who are absent from their communities because they don’t have the support to carry on.
When Kelly first reported Madeline’s story, she noted the indifference and dismissal of disability justice issues from readers and newsrooms. The podcast is an attempt to break that down.
Kelly and her producer Kelvin Gawley thought the immediacy and connection of a podcast could be a way to invite audiences to imagine they were Madeline. That her bad luck, poor treatment, poverty and lack of support could easily fall upon them after any virus, from cold sores to the novel coronavirus.
“It’s so easy to think of people with disabilities as ‘other,’” said Madeline. “‘Oh, that wouldn’t happen to me, they must have done something wrong.’ But if it happened to me, it could happen to anyone in a minute.”
As Kelly left News 1130 in March and news reports continued to detail post-viral symptoms of long-COVID survivors, she felt a podcast could capitalize on the moment “to get an audience that cares about one thing, COVID, and sneakily hook them.”
“There is a huge opportunity for the pandemic and our podcast to strengthen our understanding that we are all potentially going to be disabled at some point in our lives,” said Kelly.
“Disability is the marginalized group that everyone has a shot at joining in their lives, and COVID-19 is only increasing everyone’s chances at it,” Madeline said.
Heartened and infuriated
Without treatments or being able to afford the right food and supplements, Madeline says, her condition will worsen, and future costs will be higher.
But she’s been both heartened and infuriated at how much she has improved with treatments every two to three days in the last few weeks using the GoFundMe money. Each time she receives an intravenous injection, it feels like gasping for air after being stuck beneath the surface of a pool of water.
For the first time in a year, her cell suffocation symptoms stopped after three treatments in a row. Cell suffocation, also known as hypoxia, makes someone feel like they can’t breathe even when their lungs are working fine, because their cells can’t absorb and use the oxygen they need. It is common among cancer patients and some with ME/CFS.
“I want to live, and with more support I can,” Madeline said.
At the same time, if Madeline works too hard speaking or otherwise advocating for herself, it can trigger a crash that could send her to hospital, where doctors can’t help her because they don’t recognize her illness. This increases the number and frequency of treatments needed to keep her stable and healthy and will cause her to use her limited funds more quickly.
And after the pressure on her arm from having her blood pressure taken at the hospital worsened a crash two years ago, Madeline avoids going to the hospital, and has only been a few times since. “There is no help for me there.”
Madeline says in an ideal world the province, which is aware of her situation through multiple meetings with her advocates and elected officials, would have funded her treatment and support long before her condition worsened to this point.
“I shouldn’t have to beg for my life,” Madeline said.
When Madeline met with the doctor for MAID, she told Madeline she had seen ME/CFS patients before.
“It was infuriating that people on the frontline are seeing that this disorder can kill, and the rest of the community won’t even acknowledge that, talk about it or address it in any way,” said Madeline. “MAID isn’t giving up; it’s just being brutally practical about what’s happening and that it’s because the larger system has abdicated on my whole disease.”
Robertson isn’t aware of any other ME/CFS patients who have qualified for MAID in B.C., but says she knows of several who have died by suicide. “It’s a very desperate conclusion to a very isolating disease.”
With so many intersections between medical discrimination, ableism and misogyny, the podcast is also helping Kelly imagine how storytelling can be done differently, in collaboration and with increased accountability towards people who are ignored and who the system was never designed to support.
ME/CFS, which mostly presents in women for reasons unknown, was first labelled “hysteria” centuries ago, dismissing the severity of the disease and women’s pain. Advocates say the illness continues to be taken less seriously because patients tend to be women.
Kelly said reporting with Madeline was challenging at her previous job because remaining “objective” in the face of such an injustice was impossible, particularly as someone who is neuroatypical and has an invisible disability herself.
“I don’t want her to die, and that shouldn’t be controversial or stop me from telling her story,” she said. “If we tell the story well enough, I have to believe that will be enough to make a difference.”
It's a lot of pressure to put on herself, Kelly acknowledges, but it’s also what drives her — and what she believes should drive all newsrooms and journalists to build the relationships needed to cover disability justice issues more often and more rigorously than they do now.
Madeline said the widespread lack of understanding of disability stands between her and life. Even if officials are aware of her conditions and her reality, it’s the larger societal false notion that “it could never be me” that keeps them from acting. “I fight for me, but purpose is also so important. I am not alone, not by a long shot,” she said.
Madeline hopes that’s changing in society, as she sees it changing in her own volunteer work and with the few friends she has told of her preparations to die.
Each time she decides to tell someone, she weighs not wanting to permanently alter her relationships against not wanting her death to be a surprise to her loved ones. “The ticking clock taints every moment.”
As she mulls the end of her life, whether in one month or many years from now, Madeline hopes her fight will help listeners gain a deeper appreciation understanding their own vulnerability at the cellular and political levels.
“If we all collectively understood our vulnerability, is there the ‘other?’ Do all the -isms, like ableism and racism and sexism, even exist?” she said. “Because then we know all the vulnerability could be us.”