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

Avid Surfer Becomes ME/CFS Advocate | #TripleGivingTuesday Community Spotlight

#TripleGivingTuesday Community Spotlight

Avid Surfer Becomes ME/CFS Advocate

Robert had a full life — he was an avid surfer, talented musician, and young businessman on the verge of launching an exciting career. Now he’s mostly homebound.

As part of Triple Giving Tuesday, Open Medicine Foundation (OMF) has the honor of sharing stories of people like Robert, resilient individuals who make up our OMF family.

Robert is an OMF supporter and ME/CFS advocate who contracted the disease in his junior year of college at just 22 years old. Like many people with ME/CFS, Robert’s life looked starkly different before he fell ill. He reflects fondly on his memories before ME/CFS:

“I loved to surf, and I traveled the world in search of the perfect wave. There is no freer feeling than gliding across the water and outrunning the crashing waves behind you! When I wasn’t surfing I enjoyed a social life and was working towards a business career in professional selling. I am proud to say that I had three job offers lined up with Fortune 1000 companies.”

Robert also happens to be a talented classical pianist. He has generously shared a piano recital video for our community to enjoy: watch and listen here.

His budding career and fast-paced life were put on hold with the onset of ME/CFS. Forced to turn down job offers, he has since been unable to work and his illness has progressed to a mild/moderate level of severity for the last five years.

This past September, Robert created an OMF Facebook fundraiser for his birthday, raising over $1,000 for OMF funded research. He’s also bravely spoken out on social media to educate his personal community about his experience with ME/CFS. 

Robert explains, “I’ve been very fortunate to have a supportive network of friends and family throughout my illness. Most of my friends probably can’t understand or relate to what I go through, but they do believe what I’m facing is real — and that is all I could ask for.”

When asked about his advocacy efforts to raise awareness of ME/CFS on social media, Robert says, “I got plenty of positive outreach. However, I believe there were a lot of unspoken people who were weirded out by it. I don’t take it personally — I understand that people (especially young people) don’t like to be reminded that something like ME/CFS could happen to them too.”

Despite his struggles living with ME/CFS, Robert shares a message of hope for the future: “If you look back on history, you will find many instances where things were considered ‘impossible’ until a group of great minds figured it out. I think the problem of ME/CFS and chronic complex disease is no different. Right now is an exciting time. We have some of the best minds working on this problem and they are making steady progress to find answers. 

It won't be overnight, but I have faith that through OMF these great scientists will be empowered to find answers to solve the "impossible" and that one day, the cure for ME/CFS will be added to the list of historic discoveries.”

Be a part of this historic effort to unlock the mystery and find a cure for ME/CFS so that people like Robert can return to their lives.

Every dollar you donate to OMF from now until International Giving Tuesday, December 1, 2020, will be TRIPLE MATCHED by some generous donors. Don’t miss the opportunity to triple your impact on critical research.

It’s with your support that we’re leading critical research and delivering hope for millions. 

Stay Informed

Be the first to hear our research news.

Subscribe Now.

No thanks

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.

###

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 five 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