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

Interagency ME / CFS Working Group Meeting 8/11/2020

“Our obligation to the millions suffering worldwide is to provide data-driven information. OMF recognizes this a critical moment in ME/CFS research, with the potential to galvanize efforts to effectively treat and prevent ME/CFS and other related Chronic Complex Diseases.”  

Linda Tannenbaum, OMF CEO & Founder/President,
speaking at the Interagency ME/CFS Working Group Meeting.

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. The presentation can be viewed here.

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 slides from the presentation here.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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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.

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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.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo