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

Up Close with Robert Phair, PhD

On this #OMFScienceWednesday we introduce you to researcher Robert Phair, PhD, running the OMF-funded metabolic trap project. Today, Dr. Phair shares his personal connections and how he became a part of OMF’s End ME / CFS research project.

“I was a professor of physiology and biomedical engineering at The Johns Hopkins School of Medicine for 16 years before co-founding (with Ann Chasson) Integrative Bioinformatics Inc, a scientific consulting and software development firm in Mountain View, CA. We combine basic principles from human biology and systems engineering to test complex biological theories against experimental and clinical data. Our clients are scientists at research institutions and pharmaceutical firms.

My neighbor, Marilyn S., is a ME / CFS patient. She and I had been discussing ME / CFS at weekly neighborhood get-togethers for about two years when another neighbor, Karin Molander, gave us a copy of her Stanford Medical School alumni magazine with an article, written by Tracie White, telling the story of the Davis/Dafoe family and Ron Davis’ ME / CFS research effort at the Stanford Genome Technology Center (SGTC).

A chain of family friendships in Silicon Valley linked me to Laurel Crosby, PhD, a member of the Davis team. Laurel invited me to visit SCTC and talk with her and Ron. I spoke with them for a half hour in July 2016, and it was obvious we all thought a collaboration was a good idea.

I worked as a volunteer for a year and a half learning everything I could about ME / CFS. The great thing about this collaboration was that, for the first time, I actually had ME / CFS data to analyze and a bunch of smart colleagues with whom to work. During this period, the first results of the OMF-funded, Severely Ill Patient Study (SIPS) became available. These data included whole genome sequencing for 20 patients, and I began to look, one gene at a time, for potential genetic predispositions. Eighty-six genes later, I found a gene for which every SIPS patient had at least one damaged copy. But because another gene provided a biological workaround, it took me all summer to imagine a theory that might explain the origin of ME / CFS based on this common mutation. This is the theory I called the “Metabolic Trap.”

When I presented my theory to the SGTC ME / CFS team, I felt definite enthusiasm. That night I got a rare text from Ron: “That was an outstanding presentation.” Naturally, this made me feel great, and shortly afterwards, OMF funded the project, in February 2018. This made it immediately possible for our company to collaborate with SGTC scientists, Curt Fischer and Julie Wilhelmy (also OMF-funded).

We’re doing experimental tests of the metabolic trap hypothesis by applying the techniques of tracer kinetics and mass spectrometry to white blood cells from ME / CFS patients and people who are healthy. The first experiments are well underway. The reason I want to work on this disease, the reason I’ve invested so many days and nights, will be obvious to anyone who is or cares for or knows a victim of ME / CFS. Anyone who has read Hillary Johnson’s Osler’s Web or has seen the moving documentary films, like Jen Brea’s Unrest, knows why we are working. Anyone who has attended a Millions Missing rally and listened to Ron Davis and Janet Dafoe speak so eloquently about the tragedy and the courageous hope of their son, Whitney, has felt in their hearts the reason this work is so important to me. We’ve seen Whitney’s Plea. We won’t give up.”

Thank you Dr. Phair for being a part of our stellar team. Read more about Dr. Phair’s metabolic trap project.

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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