VANCOUVER (NEWS 1130) — After 25 years of declining health with a debilitating disease that most doctors seem to dismiss, Madeline, who is in her 50s, says she has no choice but medically assisted death.
“I’m looking at not being able to speak, not being able to eat, not being able to get up or move. I will just be trapped in the bed and in pain. And my MAiD doctor has had people with my illnesses go down that road before,” says the Vancouver woman.
Over the years she’s encountered treatments that work, but a lack of coverage and stigma within the medical system has forced her to choose death over a future of extreme pain and immobility.
Now, her friends are trying to give her more time, asking for donations through a GoFundMe campaign to fund treatment as they work behind the scenes, advocating for her life and tens-of-thousands of British Columbians with myalgic encephalomyelitis and fibromyalgia (ME/FM).
Liza Rogers says her "vibrant and community-focused" friend shouldn't have to die from a treatable illness ad has started a GoFundMe campaign in the hopes of permanently delaying Madeline's medically-assisted death: https://t.co/qzCvtUJuyd
— Ash 'I work from home now' Kelly (@AshDKelly) November 24, 2020
“I remember her at beach parties and potluck dinners and games nights and she was always and still is, you know, I hate saying was, vivacious and fun and full of energy and curious and quirky and just such a cool, unique person to be hanging around with,” says friend Liza Rogers, who is leading the fundraising campaign.
Madeline (a pseudonym) says she’s speaking out now, because she wants people to understand the severity of her disease and the discrimination she’s faced from doctors over the last 40 years, hoping it will convince them to take COVID-19 seriously.
That’s because research groups, leading immunologists and even Dr. Anthony Fauci, the head of the U.S. National Institute for Allergy and Infectious Diseases, is warning that COVID-19 long-haul symptoms look a lot like the disease that has left Madeline increasingly bedridden and seeking an assisted death. They say the world is likely facing a tidal wave of long-term disability.
Over the decades researchers have documented several post-viral syndromes and subsequent ME/FM in patients, including those with Ebolavirus, SARS, and the 1918 flu.
Related video: COVID-19 having lasting impact on some young people
Madeline was diagnosed with ME after contracting mononucleosis, saying the first round wiped out her immune system and the second infection “broke” her.
And she’s one of millions of virus patients with long-term illnesses. A 2013 study followed 301 patients between the ages of 12 and 18 after they developed mononucleosis. Thirteen patients still reported fatigue symptoms consistent with ME/FM at 24 months; all were female.
“Some people get pain so severe that they can’t be touched, clothing hurts, some bed sheets hurt them. It’s really quite unbelievable what this disease can do to an individual,” she says.
Madeline says she lives with a level of fatigue that is “brutal” and most days can’t make herself a meal or find energy for more than a few minutes without crashing for days or weeks as a consequence.
Her health has been declining rapidly since developing a simple infection. The antibiotics she has had to take have left her in a constant state of malaise and pain.
The recurring infection could be prevented with treatment from a podiatrist but MSP doesn’t cover that and Madeline is already out of money.
“It’s an exercise in humiliation. It’s an exercise in frustration. I keep thinking that there must be some magical way to do it, but there just isn’t living at less than half of a minimum wage for a healthy person,” she says.
Rogers launched the GoFundMe campaign, “Madeline’s Miracle,” in an eleventh-hour bid to hopefully, permanently delay Madeline’s planned assisted-death.
“It’s not like any of these illnesses that she has should kill her or would kill her. What’s likely going to do her in is poverty, which is heartbreaking,” says Rogers.
“But there’s so much abundance, there’s so much money in the world. It’s not like a limited amount that suddenly, you know, if we help a person who has a disability that we’re going to run out of money somewhere else,” she adds, hopefully.
The fundraising team is aiming for $50,000 to pay for things like naturopathic IV treatments, physiotherapy, massage, acupuncture, a podiatrist, ready-made meals, and to help Madeline eventually find a team of integrated health-care practitioners.
Rogers has high hopes of funding at least a year’s worth of treatment for her friend. Madeline says it’s taken a lot of convincing to get her to agree to the fundraiser.
“It’s really hard not to feel like I’m begging for my life and that this isn’t some sort of Hunger Games game show where it’s not a given that I get to live,” she says.
Even if the GoFundMe fails to raise enough money to keep her alive, Madeline says she wants to tell her story as a warning to so-called COVID-19 long-haulers who experts worry could face a similar fate in years to come.
Millions could be disabled by COVID-19
Forget about comparing COVID-19 to the seasonal flu or a rough cold. For so-called long-haulers with post-viral syndromes, the hostile health care system is likely to be a deadly battle for thousands, say advocates.
Madeline agrees, saying she’s faced decades of discrimination and dismissal, even gaslighting by doctors who don’t believe her.
Fauci, America’s top doctor, said on July 9, 2020 that COVID-19 long-haulers, “have things that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome; brain fog, fatigue, difficulty in concentrating. So this is something we really need to seriously look at because it might be that there is a post-viral syndrome associated with COVID-19.”
It’s no surprise to immunologists and their patients. Scientists from the U.S., U.K., and Switzerland who worked with SARS and Ebola patients are warning about a blanket of illness that will stay with the world long after a vaccine arrives.
“After the acute SARS episode some patients, many of whom were healthcare workers went on to develop a Chronic Fatigue Syndrome/Myalgic Encephalomyelitis-like illness, which nearly 20 months on, prevented them returning to work,” write researchers in a letter to the editor published in Medical Hypothesis journal in November.
The scientists warn that a subgroup of COVID-19 patients are developing “long-term adverse effects resembling CFS/ME symptomatology such as persistent fatigue, diffuse myalgia, depressive symptoms, and non-restorative sleep.”
Dr. Ian Hyams has a family practice in West Vancouver where he specializes in ME/FM treatments.
“My expectation is that COVID-19 could do the same,” he said in a video interview. “It’s difficult to predict who is likely to develop long-term ME.”
Patients being ‘gaslit’ by doctors
Hilary Robertson, co-chair of the ME/FM Society of British Columbia, says the medical system is failing those with ME/FM, others with complex disabilities associated with chronic fatigue, and others with post-viral or mitochondrial syndromes.
“When you present at any access point of the health-care system you’re typically met with with lack of knowledge, lack of insight, and right up to dismissal,” she says.
“We repeatedly hear stories of patients essentially being gaslighted, being told that it’s in their head.”
After the unexpected loss of her GP and six months of hunting for a replacement, Madeline says the doctor she was sent to by B.C.’s patient health services (who was recommended as a complex disease expert) continues to tell her her symptoms are subjective.
“He acts as if most things I tell him are lies or exaggerations,” she says.
“I’ve been down this road before. How do you explain to somebody that I’ve spent up to 12 hours throwing up from pain? This is subjective, really? That I struggled to actually stand up and go to the bathroom? This is subjective? This is not subjective. These are objective realities,” says Madeline.
The ME/FM Society of B.C. says “Many health care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination.”
Others suffering with these diseases are reaching out to offer hope to COVID-19 long-haulers and continue to advocate for better care.
“Even the unlucky patients with post-viral symptoms don’t always develop full-blown ME,” it reads.
“But for those who do, rather than recovering and getting back to ordinary life, they linger in a half-life, hobbled by pain, exhaustion, sensory sensitivity, cognitive impairment or crashing blood pressure especially after exertion, even for something as simple as taking a too-brisk walk or just brushing teeth. We get slammed back into bed, the intensity of our symptoms redoubled.”
Dr. Anthony Komaroff, one of the world’s leading ME/FM physicians, wrote about his concerns in the Harvard Medical School’s Health Blog.
“It’s not unthinkable that 50 million Americans will ultimately become infected. If just five per cent develop lingering symptoms, and if most of those with symptoms have ME/CFS, we would double the number of Americans suffering from ME/CFS in the next two years,” he writes.
B.C. MSP leaves severe ME patients with nowhere to turn
Advocates are desperately hoping to leverage the attention ME/FM is getting right now for a greater good: better treatment within the system of western medicine.
“The healthcare system is riddled with ignorance and stigma regarding these two complex chronic and disabling illnesses. Patients are left desperately seeking professional medical support, often instead exposed to traumatic experiences at the hands of the healthcare system,” says the ME/FM Society of B.C. says on its website.
“Patients spend years with clinical referrals to specialists not trained to diagnose or treat the illness. The responsibility of providing care for patients with this very complex disease, and its common comorbid conditions, is then left to family practitioners.”
COVID-19 long-haulers who were lost in the chaos of the early days of the pandemic, and weren’t tested, say doctors have been dismissing their symptoms of brain-fog, fatigue and chronic pain.
ME and FM impact the body on a cellular level, disrupting its ability to produce energy. The disease has a long history of being dismissed by doctors, and most patients have faced difficulty in being taken seriously or have been told their symptoms are psychosomatic.
Madeline says she has been forced to choose regularly between necessary treatments because of shortfalls in basic medical and extended health coverage.
She believes she’s only alive today because physiotherapists and naturopaths have offered free or discounted services at their own loss, keeping her pain mostly manageable until now.
“I’ve done more research, more trial and error, than any one person should ever have to do and the only doctors I’ve come across who have any sense of what the heck is going on and ways to approach this, are naturopaths,” she says.
After finding success with hormone IV treatments, Madeline soon realized she could not afford the bi-weekly treatments. After years of scraping by and fighting for care, she now says her increasing pain will likely send her body into shock as she cuts treatments according to her finances.
“I’ll wake up from a dead sleep and I’ll hear somebody crying out and realize it’s me,” she says.
B.C. MSP only covers 10 extended health appointments to the tune of $23.50 each, falling far short of the standard charges for even a basic appointment with a naturopathic doctor.
“There are treatments that we could get it to stop and turn around. I mean, I know there are, because I did them for three years until the debt made it so I couldn’t … the only reason I picked the debt back up again was like, okay, you’re dying now,” she says.
She believes consistent and quality care will bring her long-term healthcare expenses down as her condition improves.
Madeline and her team of advocates want the NDP government to immediately increase disability assistance programs, reassess the MSP coverage for those on assistance, and ensure doctors have the training to help people with complex disabilities, especially given predictions that so many COVID-19 patients could be facing the same future.
“It could be anybody, really, in the province. It could happen to anyone. As a friend, it’s very hard to watch a friend who is so vibrant and such an asset to the community decline, from what I understand are not life threatening illnesses,” says Rogers, Madeline’s friend.
“We’re hoping that all of her friends who have supported her and loved her and had her friendship over the years will contribute even $5,” she adds, speaking of the last-ditch effort she’s making to keep Madeline alive.
They, and advocates across the world, also want to see better training about ME and FM in medical schools.
Assisted dying law proposed to change
On Oct. 7, Bill C-7 was introduced with the aim to allow more people with cognitive decline and Alzheimer’s easier access to assisted dying.
Critics say it removes essential protections for people with disabilities and could lead to abuse of the system, in part because it removes the requirement for a foreseeable death to be expected.
“There are other valid concerns as well: psychological suffering in combination with other permanent injuries potentially justified under MAID, the elimination of the 10-day waiting period, the requirement for only one independent witness as opposed to two, the waiving of final consent, and also that a witness cannot be a primary caregiver,” said Ontario MP Ted Falk.
But Madeline doesn’t see it that way. She says people with her disease need a choice when they have run out of all options and the government still refuses to provide viable care.
“I’ve found every step of my illness to be brutal, a lonely fight to push rocks up hills in every single direction and relating to all aspects of my life. As I decline those rocks have become larger and larger boulders. There comes a point where I get to say, enough,” she says.
Madeline believes her low quality of life and high level of pain should qualify her as someone who should be able to choose to die, though she wishes the government would just cover the care she needs.
“If any members of our society don’t want PWD (persons with disabilities) to choose quality of life as their sole reason for MAiD, then the plight of PWD in Canada and specifically ME/fibromyalgia patients needs to be fully and properly addressed,” she says.
Madeline says her MAiD doctor has spoken about assisting other ME/FM patients. The ME/FM Society of B.C. says, “The medical, financial and personal neglect endured by ME patients, added to the pain and suffering of the disease itself, result in a high rate of suicide among people living with ME. Some patients look to suicide as their only treatment option.”
“I’m not at all the first ME sufferer to seek MAiD. I’ve chosen to keep fighting till I can’t speak, sit up, eat or talk, until all there is is excruciating pain, immobility and isolation. But do I want to have the option to be able to say ‘uncle’ if all there is is pain cycling between an eight and 10? Definitely. Do I think others need to have that same right? Absolutely,” Madeline says.
Madeline has spent three years advocating for better care for herself at every level, from her MP’s office to her family doctor, and the Ministry of Poverty and Social Development as well as the Ministry of Health.
She is now receiving some assistance for lawyers at the Disability Alliance of B.C. who are advocating on her behalf with government staff.
Since the COVID-19 pandemic began, she’s described her pain increasing from a five or six to a constant eight to 10.
“We theoretically have universal health care. But apparently not when you have complex diseases, not when you’re disabled or poor, because I haven’t been able to get what I need,” she says.