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

OMF in the News

Our work at Open Medicine Foundation has been widely reported in the news. In the mainstream media, the top stories include:

Another Struggle for Long Covid Patients: Disability Benefits The New York Times (10/21/2021)

Burnham-On-Sea artist joins judging panel for charitable bake off Burnham-On-Sea.com (9/09/2021)

Seven Significant Organizations Propose Critical Code Change To CDC’s ICD-10, Addressing Catastrophic Lack Of ME/CFS Case Tracking In The U.S. finance.yahoo.com (8/23/2021)

Burnham-On-Sea artist donates pet portrait to winner of ‘Pawfect Virtual Bake Off’ Burnham-On-Sea.com (7/03/2021)

Burnham-On-Sea artist donates pet portrait to charity’s virtual bake-off Burnham-On-Sea.com (5/01/2021)

“THE PUZZLE SOLVER” — EXPLORING A MEDICAL MYSTERY  Times Publishing Group(4/02/2021)

Scientist Ron Davis Is Fighting to Cure His Son’s Chronic Fatigue: ‘It’s Like a Living Death’ People (3/31/2021)

Long COVID Has a Baffling Sister: ME/CFS InsideSources (3/19/2021)

FIRST IN PULSE: A NEW COALITION FOR COVID LONG-HAULERS POLITICO (2/26/2021)

For Many COVID-19 Survivors, Another Devastating Syndrome May Follow Next Avenue (1/08/2021)

Horrific Disease Ignored, Unreported in Minority Communities on Inside Sources (Oct 2019)

He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son. CNN (May 2019)

Millions suffer from an invisible disease: My ME / CFS story on CNN (August 2018)

OMF’s grant to launch the OMF-funded ME / CFS Research Center at Harvard on GenomeWeb (May 2018)

informative interview from Cape Town, South Africa, medical advisor for the ME Association, Charles Shepherd and the leader for the ME / CFS Foundation South Africa, Retha Viviers were interviewed on Afternoons with Pippa Hudson (February 2018)

article on Cryptovest.com about major donation from Pineapple Fund (February 2018)

US News and World Report article about $5 million donation from anonymous philanthropist (February 2018)

article in the Dana Point Times about the award-winning documentary Unrest (October 2017)

in-depth video story explaining ME / CFS on a top news magazine in South Africa, Carte Blanche, featuring CEO/President, Linda Tannenbaum and Dr. Ron Davis and the Davis/Dafoe family. (February 2017)

in-depth article in Stanford’s local news magazine, Palo Alto Weekly, including this compelling video.
[fvplayer src=”https://www.youtube.com/embed/9_HwOUiImvw?rel=0″ width=”438″ height=”244″]

another powerful article, this time in Stanford Medicine (May 2016);

an account of the Severely ill Big Data Study in the context of current events, on MedPage Today (January 2016);

compelling interview with Dr. Ron Davis on BBC Radio about his race to save his son (October 2015);

moving article on Dr. Davis, his son, and the End ME / CFS Project, in the Washington Post (October 2015);

published article by Linda Tannenbaum discussing the symptoms of ME / CFS, on HuffPost (March 2015

Reports on Research Meetings sponsored by OMF include:

  • detailed report of two-day Working Group meeting and Community Symposium on the Molecular Basis of ME / CFS on HealthRising (by Cort Johnson, September 2017) and Deep dive into the Science on ME on #MEAction (by Adriane Tillman, September 2017)
  • high-level report on the Community Symposium on the Molecular Basis of ME / CFS on Stanford Medicine Scope (by Raeka Aiyar, August 2017)

Science bloggers within the ME / CFS patient community have written a series of excellent and detailed accounts of the research, including:

Please follow our latest news via our news blog, Facebook and Twitter

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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  • Your gifts to your donor advised fund entitle you to an immediate income tax deduction at the time of contribution.
  • You avoid capital gains tax on appreciated assets you place in your donor advised fund.
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  • Funds are distributed to Open Medicine Foundation in your name and immediately put to use to support our worldwide research efforts.

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Just click on the DAF widget below. It is simple and convenient to find your fund among the over 900 funds in our system.

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  • Questions? Give us a call at 650-242-8669 
 

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