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

OMF's ME/CFS and COVID-19 Research Project
Brought into National Focus

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:

  • Three branches of the NIH

  • Three branches of the CDC including the Domestic COVID Response Program

  • Department of Defense: CDMRP
    Veterans

  • Administration: Gulf War Research Program 
  • Department of Education: Office of Special Education Programs
     
  • Social Security Disability Office 

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. 

View the full recording of the Interagency Working Group meeting here.

You can view OMF’s PowerPoint presentation from the working group here

Cecilia Ekhem Publishes “Weaponless,”
A New Novel About Life with 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”

Cecilia explains.

“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.

Catan for a Cure: Longtime Friends Organize a Virtual Fundraiser for OMF

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.

Russell explained,

“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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