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

Dr. David Bell Joins OMF Scientific Advisory Board

Picture10We’ve got lots of researchers, many of them leaders in their fields. But seeing the disease close up adds an important understanding that can be attained by no other way. This is why we are excited to announce another experienced and world-famous doctor to our ME / CFS Scientific Advisory Board, David Bell, MD.

Not only does the retired Dr. Bell know the disease, he has done his own research on his ME / CFS patients and collaborated with others in their research. His long history (since an outbreak in Lyndonville in the mid-1980s) also allowed him to make clinical observations that even newer experts may not have, yet.

“I am thrilled to become part of the open medicine foundation for several reasons,” said Dr. Bell. “First and foremost is that in the many years I have been studying the illness, there has not been the commitment to it by the state of the art science, and that has been mainly because of scientific apathy and/or lack of funds. But the Open Medicine Foundation is starting with the understanding that ME / CFS is not going to reveal its mysteries without real science. It is my hope that I can add to the overall effort with my clinical perspective.”

In the mid-1980s, Lyndonville, a small town in Upstate New York, was the site of an outbreak of ME / CFS, about half of them being pediatric cases. Lost with no direction from the existing medical paradigms, Dr. Bell took to trying to figure out the cause by doing his own research.

This journey continues for him, despite his retirement from practice. Dr. Bell is often asked to give presentations to share what he has learned is true and not true about the disease.

At our request, Dr. Bell wrote a description of pediatric ME / CFS and gaps in pediatric research.

We believe the other scientists on our board will benefit from the extensive and intimate experience he has. Want to know some of what he has learned? We invite you to watch and listen to his latest presentation at an event in late 2015 that was sponsored by our organization:

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