Multi-award-winning opera singer and Canadian Open Medicine Foundation Ambassador Jacqueline Ko, long known for her critically acclaimed stage performances, is a proud supporter of OMFCA’s May Momentum campaign.
Today Jacqueline discusses the importance of ME/CFS advocacy, ME/CFS awareness week, and more:
Why are you supporting OMF’s 2021 May Momentum campaign?
I’ve had ME/CFS since I was six and was diagnosed at age 10. I know firsthand how life-altering this illness can be — and how hard it is to find help or answers. Open Medicine Foundation is doing crucial work that could completely change the game when it comes to ME/CFS and other diseases like this. They’ve put together an incredible team, including world-renowned scientists, Nobel laureates, and established collaborative research centers all over the world.
OMF has already made some groundbreaking discoveries, and I’m excited to support their progress through their May Momentum campaign.
Why do you think building momentum for research of ME/CFS and related diseases is important?
There are more than 20 million people worldwide with ME/CFS — and that number is growing even during this interview. This disease is often triggered by viruses, including coronaviruses, and experts are warning that COVID patients are at risk of developing ME/CFS. So far, it looks like 30 percent of COVID sufferers are experiencing long-term health impacts. So OMF’s research into post-viral illnesses has really taken on a renewed urgency.
Photo credit: Kathryn Nickford Photography
There are brand new people, like the COVID long-haulers, and then there are people like me, who’ve had ME/CFS for most of our lives. I don’t even remember what it’s like to be healthy — many of us have been living in a kind of lockdown for decades, long before most of the world even knew what that word meant. For the ME/CFS community, finding answers isn’t just urgent; it’s long overdue. Right now, millions of ME/CFS patients don’t have any effective treatments, and it’s estimated that 90 percent don’t even get diagnosed, so they aren’t even counted in these high statistics. OMF is working hard to change the landscape on diagnosis, treatments, and eventually a cure — and it’s a cause everyone should support.
“I don’t even remember what it’s like to be healthy — many of us have been living in a kind of lockdown for decades, long before most of the world even knew what that word meant. For the ME/CFS community, finding answers isn’t just urgent; it’s long overdue.”
May is international Awareness Month of ME/CFS and related chronic, complex diseases. What is one thing you think everyone should know about ME/CFS?
Well, let’s start with this: Everyone should know about ME/CFS, full stop. This is a global health crisis that’s been going on for decades, and it affects people of all ages and from all walks of life. But a lack of awareness has led to a lack of funding, medical research, health care, community support, family support in many cases, and so much more. In Canada, where I live, at least 1 in every 65 people has ME/CFS, but many doctors don’t even learn about it in medical school. There are lots of things I think people should know about ME/CFS and much more that research has yet to discover. But the first step is for people to know that ME/CFS exists at all.
How has your personal connection to the cause inspired your advocacy work as an OMF & OMFCA ambassador?
As well as being a disability advocate, I’m a performer — I sing opera, and I’m the founding artistic director of Opera Mariposa, Canada’s first entirely disability-led opera company. For me, art and advocacy go hand in hand, and I love using music to reach people. I started singing for ME/CFS awareness when I was 17, and since co-founding Opera Mariposa, we’ve held “Benefit + Awareness” events for ME/CFS and related diseases every year.
The Impossible Dream, 2019. Photo credit: Diamond’s Edge Photography
At some point, OMF heard about our work and reached out to invite me to become an OMF and OMFCA Ambassador. Since then, I’ve not only been delighted to participate in their campaigns but recently released my first musical single to benefit OMF’s research. This cause is close to my heart because I have ME/CFS — but I’d say it’s my identity as a disabled artist leading a disabled organization that has really inspired my advocacy.
In honor of ME/CFS & FM Awareness Month, Jacqueline Ko and her Opera Mariposa co-founder Robin Hahn have just released a new YouTube video, talking about Jacqui’s ME/CFS story and life in opera with chronic illness. Check out the video, from two of the founders behind Canada’s ONLY entirely disability-led opera company!
Join Jacqueline Ko and our global network of donors and advocates by supporting May Momentum today. Together, we can accelerate research and find the answers necessary to win the fight against ME/CFS and related complex diseases.