By: Charlene Aviles, Peak Associate
Opera Mariposa, an opera company, is hosting its 10th annual Benefit + Awareness Campaign for myalgic encephalomyelitis (ME) and fibromyalgia (FM) during May 1–June 1, 2022. Their website notes they are “Canada’s first entirely, openly disability-led and run opera company.”
The virtual campaign will include a music video from singer Jacqueline Ko and interviews with Ko and YouTuber Robin Hahn. Opera Mariposa has also partnered with Christina Baltais — an artist living with myalgic encephalomyelitis who uses paintings, photography, writing, and art to showcase their experience living with chronic illness.
Opera Mariposa reports myalgic encephalomyelitis can lead to issues ranging from “chronic pain, cardiac issues, and immune problems to neurological symptoms like movement disorders, light sensitivity, and intermittent dyslexia.”
They also note fibromyalgia is characterized by chronic fatigue, widespread pain, brain fog, issues with sleeping, and digestive issues. According to ME | FM Society of BC, “the cause of myalgic encephalomyelitis is not yet known.”
The campaign’s goals are to increase public awareness on myalgic encephalomyelitis and fibromyalgia, raise funds for the ME | FM Society of BC, and build a community.
In an interview with The Peak, Stephanie Ko explained her sister Jacqueline was always passionate about fundraising and educating others on myalgic encephalomyelitis. They realized from first-hand experience how few people were educated on myalgic encephalomyelitis.
“We’ve encountered that first-hand in the medical system trying to seek health care, and then that flows through to family and friends and the public, the lack of understanding, the lack of support,” said Ko.
She added, “There’s an additional urgency now with COVID-19, because the majority of these types of illnesses [can be] triggered by viruses.”
Ko reported, “Researchers are estimating that one in ten folks who get COVID-19, including mild cases and even initially asymptomatic cases, are probably going to develop myalgic encephalomyelitis.”
The response to the annual campaign has been positive. She explained many participants approached her enthusiastically about how the event was the first of its kind in Canada.
“When we started these events, we had folks phoning us up saying that they’d never heard of an event like this and being excited, saying ‘And it’s in Canada where I live!’” said Ko.
Ko explained the urgency of this cause, especially since many people with myalgic encephalomyelitis and fibromyalgia have difficulty accessing health care resources.
“Myalgic encephalomyelitis is a very prevalent illness. Prior to the pandemic, it affected over half a million people in Canada [ . . . ] but it’s not even talked about in most medical schools. For people, it takes many years to get a diagnosis, and they think about 90% of people with it aren’t even diagnosed.
“Statistics Canada showed that myalgic encephalomyelitis and fibromyalgia had the greatest unmet healthcare needs of any chronic patient population in Canada and the highest poverty levels,” said Ko.
At the heart of the campaign is Opera Mariposa’s commitment to accessibility. Taking into account the different aspects of accessibility, the campaign will be online, self-paced, sensory-friendly, and feature closed-captioning, and alt-text.
“To me, temporal access, temporal accommodations, is one of the most invisible but pervasive aspects of accessibility, or the most common friction points, particularly for people with energy limiting illnesses or access needs,” said Ko. Participants will be able to watch the interviews, experience Baltais’ work, and Ko’s music online at their own pace.
Opera Mariposa is accepting donations via Rally Up.
To learn more about the campaign or to purchase entry tickets, visit Opera Mariposa’s website.