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

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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/CFSn

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 OMFn

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. 

 

NMR Metabolomics
NMR (Nuclear Magnetic Resonance) is an instrument/tool used to perform metabolic studies, metabolic profiling, and metabolomics in biofluids and tissues for more than 40 years using magnetic fields. There is a very close connection between metabolic measurements and NMR. This connection has flourished because of NMR’s many unique strengths for characterizing complex mixtures’ chemical composition.
Proteomics
The large-scale study of proteins, which are large, complex molecules that are required for structure, function, and regulation of the human body's tissues and organs.
Microvesicles and viral sequencing
Microvesicles are a type of extracellular vesicle that is released from the cell membrane. Vesicles are small, fluid-filled sacs or vacuoles within the body. Sequencing is a technique used to determine the exact sequence of bases (A, C, G, and T) in a DNA (or viral) molecule.
Micro RNA
Cells use Micro RNA to control whether a particular gene is making too much, too little or the normal amount of its protein at a particular time.
Autoantibodies
Antibodies that react with self-molecules and that occur in healthy individuals and are referred to as natural antibodies or autoantibodies.
Extracellular DNA for viral reactivation and Mitochondrial DNA
exDNA (extracellular DNA), exDNA is often secreted actively and is used to perform several tasks, thereby offering an attractive target or tool for biotechnological, medical, environmental, and general microbiological applications. Viruses are intracellular parasites that rely to a significant extent on the host cell for replication. Viral reactivation occurs when an active replication of the viral genome results in a lytic (degradation of the cell) infection characterized by the release of new progeny (descendant) virus particles.
Immune cell profiling
The immune system has many important regulatory roles in disease development and progression. Given the emergence of effective immune therapies, reliable predictors of response are needed. Immune cell profiling determines response by evaluating immune cell populations from treated and untreated samples. For our purposes, we will evaluate the white blood cell response to the viral infection using a process called “Cytof.”
Leukocyte Genomics
A leukocyte is a colorless cell circulating in the blood and body fluids and is involved in counteracting foreign substances and disease. A genome is all genetic material of an organism. Genomics is a biology field focusing on the structure, function, evolution, mapping, and editing of genomes. Therefore, leukocyte genomics is the study of all genetic material of leukocytes.
Metabolomics
Metabolomics is a way to study metabolism – that is, through measuring amounts of the metabolites (small molecules) produced by our bodies as we convert food into energy and other molecules that our cells need to survive. Metabolomics technology is ‘large-scale,’ meaning that several thousand metabolites can be measured from a single sample of e.g., blood or urine.