Open Medicine Foundations’ ME/CFS and COVID-19 research project was brought into national focus at a recent, federally-sponsored meeting of the first-ever virtual Interagency ME/CFS Working Group Meeting.
This first meeting of the new Working Group focused on ME/CFS and those suffering from post-COVID-19 symptoms (aka “long-haulers”).
This meeting, unique in its scope, was the first time that representatives of multiple federal research programs met collectively with three leading ME/CFS focused nonprofits, OMF, Solve ME/CFS Initiative and #MEAction.
Hosted by the NIH and the CDC, representatives of federal research programs included:
OMF’s CEO & Founder/President Linda Tannenbaum and OMF’s Chief Medical Officer Ron Tompkins provided an update on the OMF funded study on COVID-19’s possible conversion to ME/CFS.
OMF looks for every opportunity to accelerate research. The study will examine individuals from early severe COVID-19 illness through their recovery and rehabilitation phase, offering an unprecedented chance to identify biomarkers and discover drug targets and prevention strategies for ME/CFS.
Swedish Open Medicine Foundation (OMF) supporter Cecilia Ekhem is no stranger to using her pen to bring her experiences with Myalgic Encephalomyelitis / chronic fatigue syndrome (ME / CFS) to life on a page.
Prior to life with ME/CFS, Cecilia had already published two books in her spare time when she wasn’t working as a business developer.
After she developed ME/CFS, however, her ability to write as she knew it abruptly came to an end. Despite the personal tragedy, Cecilia didn’t give up—with remarkable resilience, she found a way to continue writing within the confines of a cruel disease that has left her mostly bed ridden.
Since the onset of ME/CFS, Cecilia has written poetry that inspires, gaining thousands of followers, and received the Anders Frostenson scholarship for her hymn texts three years in a row.
In June of 2020, Cecilia published “Weaponless,” a novel about “finding your context and awakening the glow of a soul hidden in a limited body” to help raise awareness of ME/CFS and bring comfort and inspiration to other ME/CFS sufferers.
“The title Weaponless is from a poem by the famous Swedish poet Karin Boye. I chose it because life with ME/CFS sometimes feels like entering a war without weapons”
“The book is written from bed with around five sentences a day as headaches and fatigue don’t allow more writing than that.”
Cecilia’s determination paid off.
“The book has received a warm welcome from many readers, both ill and healthy, young and old,” she says. “A month after the release, around $800 has been raised through book proceeds for OMF funded research into ME/CFS. There is also information about OMF on the cover.”
OMF sends our gratitude to Cecilia and all those in our community who use their creative talents to help us raise funds and awareness. We are incredibly inspired by all of our supporters that have done and continue to do incredible fundraisers, including publishing books and articles. We are so lucky to have you in our OMF family!
Visit Cecilia’s website to learn more.
This July, long-time OMF supporter and ME/CFS advocate Russell launched Catan for a Cure, a unique virtual fundraising event in honor of his good friend Ryan, who has been suffering from severe ME/CFS for over six years.
“In an effort to raise funds and awareness for Open Medicine Foundation’s mission to find a cure for people like Ryan, we planned a fun-filled tournament for a game that Ryan loves—Settlers of Catan.
Even though Ryan can’t speak or walk right now, and is lying down in a dark room, he can still type and click in small doses, and he is still as sharp as he ever was.”
Russell and Ryan opened the event for the entire community to participate, announcing that two anonymous donors generously agreed to match the entries for the first 81 entrants—and the results were phenomenal.
Russell and Ryan raised $5,000 towards OMF Canada funded research!
OMF was thrilled to support this night of friendly competition in support of Ryan, and all people affected by ME/CFS worldwide. We would like to send our gratitude to Russell for creating this interactive event to support research, and to Ryan for bravely sharing his story with the world. Both friends inspire us, serving as reminders of the incredible strength and resilience within this community.
If you are able, please consider contributing to our effort to uncover research-based answers.
Help us improve the quality of life for all sufferers of ME/CFS and other chronic complex diseases, such as Post Treatment Lyme Disease Syndrome and Fibromyalgia.
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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.
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 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 six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.
Heather Ah San
Development and Communications Manager