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

Exciting Updates from Ronald W. Davis, Ph.D!

From the Desk of Ronald W. Davis, Ph.D.,
Chair of Open Medicine Foundation (OMF) Scientific Advisory Board

I am honored to share that my research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) has been featured by People Magazine! This feature details my family’s personal struggle to find treatments or a cure for my son Whitney, who has suffered from severe ME/CFS for over a decade. As stated in Peoples’ teaser article, I don’t care who solves ME/CFS. I just know that it can be solved using good reasoning and good experiments. There’s something broken here, and I know we can fix it. We hope this feature can increase large-scale awareness of the devastation ME/CFS causes and will attract new funding opportunities and researchers to the cause.

Read the teaser in People Magazine now. 

(Be sure to look for the full print version, now available in stores, or in digital as soon as it is available!)

People magazine will also be airing a TV show featuring me and my family to accompany the teaser article on April 5, 2021 starting at 7pm ET / 4PM PT. You can stream the show on April 5 at 7pm ET here. You can also watch the show on People.com, PeopleTV app and People’s Facebook, Twitter and YouTube accounts. If you can’t tune in on April 5, the feature will be made available for later viewing here.

I would also like to share with you a video update about exciting research progress happening at the ME/CFS Collaborative Research Center at Stanford!

This video is about our successful demonstration of the Metabolic Trap in yeast. We inserted the Human IDO1 gene into Baker’s Yeast. This gene leads to the production of a chemical compound called Nicotinamide Adenine Dinucleotide (NAD), essential for yeast to grow. We eliminated all other ways for yeast to produce NAD. Under normal levels of Tryptophan, the yeast grows normally.

When we increased the Tryptophan, the yeast stopped growing. When we reduced the Tryptophan, the yeast resumed growth. This is a demonstration of the Metabolic Trap in an organism! This is exciting because it provides us with an easy means to test if various drugs and/or supplements might get the yeast out of this Metabolic Trap, providing the possibility that this might work in humans.

We are proceeding to try this in human cells. I want to give special acknowledgment and gratitude to Open Medicine Foundation because the early work analyzing the data from the Severely Ill Patient Study led to the Metabolic Trap hypothesis. This work was largely funded by Open Medicine Foundation and we couldn’t have done it without them.

Lastly, I am excited to share this paper written by Laurel Crosby Ph.D., Dr. Hector Bonilla, and colleagues at Stanford University. I believe this publication details a potentially very important development in the treatment of ME/CFS.

Dr. Hector Bonilla started prescribing low dose Abilify to some of his patients based on a report from a patient that it had helped her.

He began to find that it significantly improved the symptoms of many patients, with few side effects, so he and Laurel Crosby, Ph.D., and colleagues, decided to do a retrospective examination of his patient records. We were all impressed with the findings and thought it important to publish this very preliminary report. We are pleased to have now established a good working relationship with the Stanford ME/CFS Clinic, led by Dr. Bonilla, and we are now pursuing Abilify for a placebo-controlled, double-blind study to more formally determine if Abilify should become an FDA approved treatment for ME/CFS.

Having witnessed the significant improvements that my son, Whitney Dafoe, has experienced with Abilify, I’m hopeful that other patients will be able to benefit as well.

Read the full paper on Abilify

*Please note – OMF funds research projects at our five established Collaborative Research Centers (CRC). We are not typically involved in the research process. Each CRC operates independently and recruits research participants from clinicians that they collaborate with locally. CRCs are not able to respond to inquiries from the general public. Additionally, OMF is not authorized to give medical advice or comment on personal medical concerns.*

Help us keep the research going.

Together we can improve the quality of life for all sufferers of ME/CFS and other chronic complex diseases, such as Post Treatment Lyme Disease Syndrome and Fibomyalgia.

 

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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