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

Newsletter July 2021

OMF Ambassador Jacqueline Ko celebrates her birthday with a fundraiser for research:

Donate before August 1 for the chance to have your gift tripled!

In celebration of her 30th birthday, multi-award-winning opera singer and OMF Ambassador Jacqueline Ko, kicked off a fundraiser for Open Medicine Foundation Canada!

Jacqueline explains, “As some of you know, I’m the Canadian Ambassador for Open Medicine Foundation, which leads the world’s largest concerted nonprofit research effort into complex chronic diseases like ME/CFS — an illness that affects over 20 million people worldwide, including me and my sister Stephanie.”

Additionally, Jacqueline will be donating all music download proceeds from her single, “Elle a fui, la tourterelle,” to OMF Canada until August 1, 2021.

Aiming to raise awareness for the ME/CFS community through music, Jacqueline’s release, “Elle a fui, la tourterelle,” is a classic French opera aria (“She has fled, the turtle dove”). This beautiful song is sure to resonate with the ME/CFS community, performed by a character who has been forbidden to sing due to ill health — but keeps on singing anyway.  Download and listen now!

Jacqueline’s Facebook fundraiser is set to run until August 1, 2021.

As we join together in celebration of Jacqueline’s birthday, please consider giving the gift of hope by supporting her fundraiser today! All donations will be generously TRIPLE MATCHED up to a fundraising total of $1,200 — meaning you can make TRIPLE the impact towards ME/CFS research. Hurry before the match runs out!

Not on Facebook? No problem!
Donate to Jacqueline’s fundraiser directly on our website!

 “ME/CFS is a debilitating, usually lifelong disease… and a critical global health concern right now. It’s often triggered by viruses, including COVID-19,” Jacqueline says. “Open Medicine Foundation has put together a team of renowned scientists, including multiple Nobel laureates, and established an international Collaborative Research Network.”

“Your gift helps accelerate their vital research to find better diagnostic tools, treatments, and ultimately a cure for people with complex diseases like ME/CFS, Post-Treatment Lyme Disease, Fibromyalgia, and Long COVID.”

Powerful virtual dance performances capture life with ME/CFS:

Dancer and choreographer Kristine Oma fundraises for research and raises awareness through dance

OMF is inspired and moved by the creativity and resilience of our community. Throughout 2021, Kristine Oma, dancer, choreographer, and person with ME​/​CFS, has been creating digital dance performances to benefit ME​/​CFS research.

All proceeds from her performances are generously donated to OMF, ME Action, and ME-Foreningen. These unique virtual experiences address the theme of isolation due to illness and are streamed live directly from Kristine’s home in Norway. We are honored to share an in-depth interview with Kristine as she discusses her battle with ME​/​CFS, the inspiration behind her performances, and her hopes for the future:

Can you tell us more about your dance fundraising events? What inspired you to create these unique virtual experiences?

I’ve been performing what I call my “artivism digital dance performances” once a month throughout 2021. I decided to create value out of my life and find purpose, besides allowing myself to dance regularly. As part of an extensive network of choreographers and dancers, I jumped on one of the first virtual opportunities to present a short dance work on Facebook. I was later invited to perform the work at local, national, and international festivals, and people responded well to the work.

I chose to make it into an opportunity to spread the word about the #millionsmissing. Because I suffer from this illness, all my work has to be within this context until there is a cure. I also ask myself, “How do I dance now that I am ill?” I have to dance. Both physically and as a metaphor for enjoying life. Even though I am bedridden, I can still dance with my eyes, my fingers, and my toes. Yet it is so sad to be so ill when you love to dance.

To get access to the digital dance costs $5, and all the money raised goes to Open Medicine Foundation, MEAction, and the Norwegian ME union. I also speak English during my performance so that it’s easy to understand for an international audience.

How long have you been living with ME​/​CFS?

I have had ME​/​CFS for over 10 years. For the last five years, I have been bedridden 20 hours a day. Most likely, I have had it much longer. As a dancer, you are used to pushing through fatigue, so it was a long road to understand the extent of my condition. I had to pace myself and conserve energy accordingly.

Photo credit: Jorunn Ingvarda Rødseth Pedersen

What is your connection to dance?

I have been a dancer, choreographer, and dance/yoga/pilates instructor my whole life. I trained as a choreographer at Victorian College of the Arts in Australia and lived seven years in London studying and working as a dancer before moving back to Norway.

I used to travel a lot as a dance artist. But since getting ill, I have performed mainly in Norway when my body allowed me to. The pandemic has provided the opportunity to do more work. It’s wonderfully energy-saving to lie in bed after a performance, not having to travel anywhere!

 

Your dance performances address the theme of isolation due to chronic illness. How has isolation personally affected you as a person with ME​/​CFS?

Isolation has deeply affected me. I do believe it creates a wound in one’s personality. Yet since the pandemic, I must admit I have never been more social since becoming ill as suddenly everyone started to meet on zoom or similar platforms. Also, everyone feeling what it’s like to be isolated during this pandemic gave me a sense of not being alone.

I make sure to have at least one good conversation a day, and it keeps my “isolation injuries” in check. I also get very creative when I am alone, so this is good, and as such isolation has provided a lot of creative space for me. Yet, it’s not always nice to be so isolated. Feeling stir crazy and completely exhausted is the most awful combination, as I am sure everyone with ME​/​CFS knows.

Have you found any ways to help cope with the isolation while living with this disease?

Being creative keeps me alive. Constantly chasing growth from within keeps my vitality shining. I also try to focus on what’s good. I have deep grief for all life lost, yet I am determined to keep fighting and living the best life I can live. My most profound sense of joy comes from creating value out of life as it is. And this is also why I created this digital dance. I want to contribute and find worth with my life as it is. I am alive, so I must have a purpose. My dance is my purpose for the #millionsmissing. I also write a blog where I try transferring my dance into words.

I want to make every person watching feel what it’s like to have ME​/​CFS. I do believe if people feel what it’s like, they no longer can ignore or dismiss it. ME​/​CFS feels for me like it is the forgotten pandemic. I want to make everyone SEE and FEEL. We need a cure and health equality NOW. It’s a basic human rights issue, the way I see it.

In your event description, you mentioned having to live in quarantine is more or less normal for people with ME​/​CFS. Do you think the pandemic can lead to change and increase empathy for the chronically ill now that many people have experienced isolation during COVID?

That is my hope, and I certainly will do what I can to make that happen. I consider myself a disabled artist, and I have been so happy to attend performances and lectures online within dance and choreography. It is important for me that these virtual opportunities continue after the pandemic ends. Just because we are ill doesn’t mean we don’t have something we can contribute to society. It’s like society forgets this in the business of life. I believe everyone now knows what isolation is. And understanding something creates the best possibility for progress.

Visit Kristine’s Facebook event page to learn more and get tickets
for the July 30 virtual dance performance!
Read more

OMF is a proud sponsor of the 2021 IACFS/ME Conference!

Registration open now

Registration is now open for the 2021 International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) Virtual Conference!

Learn more and register now

*Register before August 18, 2021! Registration closes on August 18 at 10am Eastern Daylight Time (New York City, USA time).*

This informative virtual event will focus on the biomedical, public health, and behavioral aspects of ME/CFS and associated comorbidities. A portion of the meeting will also focus on COVID-19 and its connection to ME/CFS research and clinical care. OMF is proud to be one of the sponsors of this exciting opportunity to inform and educate the community and prominent ME/CFS researchers worldwide to virtually connect and share ideas.

Support critical OMF funded research by becoming a monthly donor!

If you are passionate about our mission to end ME/CFS and related chronic, complex diseases, please consider becoming a monthly sustaining donor.

What does your support help to make possible? Over 20 groundbreaking studies conducted through OMF’s ME/CFS Research Collaborative, a global network of five prestigious academic research institutions led by some of the world’s foremost researchers.

The projects and trials continue to make great strides towards finding answers for millions suffering from ME/CFS, Post-Treatment Lyme Disease, and Fibromyalgia — and now potentially millions more with Long COVID. But we need your help to continue our momentum year-round.

Please consider becoming a sustaining monthly donor today and help us find answers to return millions to health: Click here to sign up today.

Join our global network of donors and advocates by supporting OMF funded research today. Together, we can accelerate research and find the answers necessary to win the fight against ME/CFS and 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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