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

Ron Davis talks ME / CFS at Columbia and Princeton

Written by Janet Dafoe, PhD

Ron Davis spent the last week on the East Coast giving talks and talking individually to scientists and doctors about ME / CFS. First, he spent two days at Princeton University. He talked to individuals, groups of graduate students, and groups at lunches and dinners. He gave a talk in the huge Molecular Biology Department (includes immunology, microbiology, genetics, biochemistry, et al) in a big lecture hall with about 300 scientists. He sensed that they were surprised and shocked by how many people are affected and how severe the disease is. They were impressed by the progress Dr. Davis has made with such minimal NIH funding and relying on donations from patients.

Then Dr. Davis went to the Einstein Medical Center at Columbia University and gave a similar talk to 100 doctors and scientists in person and 184 more who logged in online. Again, they were surprised and shocked by the information he presented. He knew it was being Livestreamed so he didn’t take questions, but talked for 1 1/2 hours and incorporated questions that he is commonly asked. Nobody left. Ron really emphasizes the prevalence and severity of ME / CFS, the need for medical care, the urgent need for research, the growing group of great scientists that are working on it and the fact that none of them have enough funding from NIH.

The week before this, Dr. Davis gave the keynote address at Synchrony 2019, a large Autism conference in Pleasanton, California. Again, he had a large audience of researchers, doctors, and caregivers. They were really impressed by his research and were struck by some of the similarities between Autism and ME / CFS.  OMF Scientific Advisory Board Member Robert Naviaux, MD, talked just before Ron. They are going to collaborate with Ron, sending some patients to his lab so they can investigate similarities and differences. The Autism group will be funded by one of the Autism Foundations since Ron only uses Open Medicine Foundation funds on ME / CFS.

View Dr. Davis’s lecture at Einstein Medical Center.

For a detailed overview of Ron’s presentation at Einstein, read this article by Paolo Maccallini.

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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 five 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