OMFCA Commemorates International
ME/CFS Awareness Day
Today, May 12, 2022, marks International ME/CFS Awareness Day. Today and every day, we stand in solidarity with all those affected by these devastating multi-system chronic complex diseases (msCCD). We acknowledge the significant challenges you face, and we remain dedicated to our mission of improving patient care and accelerating research that will lead to effective treatments.
What does it mean to live with ME/CFS and related msCCD? OMFCA Ambassador and award-winning opera singer Jacqueline Ko became ill with ME/CFS when she was just six years old. She has since become a strong advocate for people living with disabilities around the globe.
Today, Jacqueline shares more about her journey navigating illness from a young age and why she supports Open Medicine Foundation:
By vividly sharing her reality, Jacqueline helps us to demonstrate the importance of maintaining momentum and pushing research forward – so millions of people can return to the healthy, productive lives they deserve.
To recognize May 12 Awareness Day, we are honored to share a special article written by Christian Godbout, an ME/CFS patient of twenty-two years:
A History of Neglect
Myalgic Encephalomyelitis and its Relationship with Medicine
By Christian Godbout
Photo credit: Munchmuseet.
Only forty years ago, the name “chronic fatigue syndrome” did not even exist. The thing, however, existed nonetheless and plagued the lives of countless people under the name, among others, of myalgic encephalomyelitis – ME. It plagued lives then and still plagues lives today. Unaltered. Always coming with the same sufferings.
This text would like to address the medical field entirely, from medical and research students to policy makers.
It is also written for anyone affected by this condition, which is too often confronted with harmful ignorance. I will discuss a few examples.
But first, let’s consider this scenario. A scenario that makes no sense. Imagine a world-renowned biomedical researcher with fifty years of experience in the field, having received numerous prizes and Lifetime Achievement Awards, and whose son falls so seriously ill that he becomes permanently bedridden.
Now imagine that, despite all his knowledge and impressive background, this researcher has virtually no clue of what is really going on in his son’s body.
That was the situation of biochemist and geneticist Ronald W. Davis in the early 2010s when his son fell into severe ME.
Consider this: a disease capable of ending the professional and social life and all leisures of those it afflicts, who leaves them homebound if not bedbound indefinitely, a disease whose most severe forms have been compared to late-stage AIDS, – but whose very existence is hardly taught in medicine. How crazy is that?
As we celebrate and honor the global patient community for May 12th, join OMF to maximize the impact of your donation and inspire HOPE for millions worldwide. Please donate today!
Want to take your donation to the next level? Please consider becoming a monthly donor! Your monthly contribution ensures that we have the resources necessary to fulfill our mission to end multisystem chronic complex diseases (msCCD).
Take Action by Launching a Fundraiser for OMF!
Please help us to raise awareness by creating a digital fundraiser for OMFCA in honor of International ME/CFS Awareness Day! Personal fundraisers are a powerful way to help us accelerate research and improve patient care around the globe.
Click here to launch a Facebook Fundraiser in as little as 60 seconds, or check out our free toolkit to create a fundraiser on a different platform.
Thank you for supporting our mission to end ME/CFS and related multi-system, chronic, complex diseases (msCCD).
Learn more about OMFCA’s annual #MayMomentum campaign and ways you can get involved:
Thank you for your support.
We are so grateful to have you as part of our OMFCA Family! ♥