Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Supporting disabled artists: Exclusive interview with Jacqueline Ko!

#TripleGivingTuesday Ambassador Spotlight

How Jacqueline Ko is “Holding Space” for artists with disabilities and chronic illnesses

Multi-award-winning opera singer and Canadian OMF Ambassador Jacqueline Ko, long known for her critically acclaimed stage performances, is working urgently to promote inclusivity and accessibility within the opera industry and beyond.  We are honored to share the following interview for Triple Giving Tuesday, in which Jacqueline discusses her advocacy work and how she is #HoldingSpace and #MakingOperaAccessible for artists with disabilities and chronic illnesses.

Photo credit: Diamonds' Edge Photography

As an award-winning opera singer and the founding artistic director of Opera Mariposa, you’ve accomplished so much at such a young age! How did you first discover your love of opera?

I started taking voice lessons as a kid, and my first teacher happened to be an opera singer. We discovered that my natural singing range was a good fit for the operatic repertoire – I got introduced to some great music, found out how much fun it was to sing high notes, and I was hooked! 

You were diagnosed with ME/CFS when you were just 10 years old. Can you share a bit about that process, and about your experiences navigating young adult life with ME/CFS?

I actually developed ME/CFS when I was six, but I wasn’t diagnosed until I was ten, after a bad relapse. In some ways, diagnosis was more straightforward for me than for many people: my sister Stephanie also has ME/CFS and she’d been diagnosed two years earlier, so that helped us figure out what was going on. Even so, it was a challenge finding a medical professional who’d do the investigations needed to confirm a diagnosis, instead of just dismissing every symptom as “all in my head”. 

That’s one of the reasons I believe education and advocacy are so vital for ME/CFS: I’ve seen firsthand how much work still needs to be done.

Becoming disabled so young was difficult – I missed out on school, friends, and most of the typical milestones of growing up. There were years I was so sick, I don’t actually remember them at all. But I’m extraordinarily lucky to have had a support system, and Opera Mariposa has grown out of that. I’ve been very lucky to work with so many amazing and supportive people, and that’s enabled me to pursue what I love, even though I’ve had to take a non-traditional route. 

What have you been up to lately? Can you give us any details about the projects underway at Opera Mariposa? 

I’m still housebound, due to the pandemic – but as someone with ME/CFS, that isn’t exactly new. I’ve been exploring audio and video recording, coaching online, and learning new opera roles from home. 

At Opera Mariposa we recently wrapped up our latest ME/CFS & Fibromyalgia Benefit + Awareness event, which raised over $10,000… bringing our charity fundraising total since Mariposa started to over $100,000!

This fall marks another milestone as well, because we’re embarking on our tenth season and launching a new initiative. Starting on November 4th, we’re teaming up with several other opera companies across the country to launch ‘Holding Space for Disabled and Chronically Ill Opera Artists in Canada’. This series of online conversations will be open to anyone in the Canadian opera sector who identifies as disabled/living with a disability or chronic illness. People can join us on Zoom to network and foster dialogue – or send us their thoughts anonymously ahead of time.

Photo credit: Diamonds’ Edge Photography

‘Holding Space’ sounds like an exciting series! How did this idea first come about?  

The idea was brought to us by Alaina Viau, the Founder and Executive Artistic Director of Loose Tea Music Theatre in Toronto. She’s another fantastic disabled opera artist, and she was inspired by other ‘Holding Space’ events for underrepresented groups like BIPOC and LGBTQ2S+ artists.  

There are actually a lot of disabled and chronically ill people involved in opera, but we can face a lot of stigma and stereotypes, so it’s incredibly rare for us to be “out”. I can’t tell you how many times someone has privately told us that they have a health condition or disability, but feel like they can’t be open about it. That can be tremendously isolating, and we wanted to create a place where people like us can connect and build community.

What are some ways you would like to see opera and the performing arts industry become more accessible and inclusive?  

I’d like it to be safer for people to discuss both disability and accessibility, and to communicate their access needs. The fact is, every human being has their own access needs: whether they’re disabled or chronically ill, minority language speakers, elders, parents, children. These types of conversations need to be normalized, for both artists and audiences. And they should start at the beginning of a project, rather than being an afterthought.

There are so many things that can create barriers for people: from pricing, to scheduling, to things like dress codes. What it comes down to, though, is that if we don’t want to exclude people, then we need to be flexible and find different ways for different people to engage. 

As a disabled artist, what advice would you give to those with chronic illness and/or disability that want to pursue a passion for the performing arts? 

My personal experience with ME/CFS won’t necessarily be the same as someone else’s. And someone with ME/CFS may not have the same needs as someone with another health condition or disability. So the main thing I’d say is that, whether or not you’re disabled, there isn’t just one right way to have a career or to engage with an art form you love.

What I’ve personally learned, through trial and error, is that I need to listen to my body. For me, this means scheduling recovery time as part of each project, and being selective about what projects I even audition for. Some days I might need to finish a voice lesson lying down. I still have to remind myself that medical aids are meant to be used, and I shouldn’t wait until it’s “bad enough” that I can’t manage without them. It’s a continual learning process, and I’m still figuring it out.  

I’ve also found it helps to have a community. The reality is, so much of being disabled or chronically ill isn’t just about one’s individual capacity – there are also systemic barriers, and external expectations and judgments. So it’s good to connect with like-minded people. 

Opera Mariposa’s ‘Holding Space’ series launches November 4, 2021 at 1:00pm PT / 4:00pm ET on Zoom, in partnership with Loose Tea Music Theatre, supported by re:Naissance Opera / IndieFest and ASL sponsor Tapestry Opera. The event is presented with automatic captions, with ASL interpretation on request by Thursday, October 28. Learn more and register for FREE at operamariposa.com.

Don’t forget — when you donate to OMF anytime between now and November 30, your donation will be TRIPLE MATCHED! Your gift, of any amount, helps to accelerate research so people can pursue their passions without the limitations inflicted by related chronic, complex diseases.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo