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

Spring 2019 Newsletter

Follow ME / CFS Researchers Gathering Around the World

Dear Friends,

We are in a very busy and exciting time. OMF-funded scientists are meeting around the globe with other experts to advance research. We were thrilled to have such a strong presence at the Emerge Australia conference. As reports, recordings and information is available, we will continue to keep you informed.

The Expert ME / CFS Clinician’s Summit in Salt Lake City, Utah was a great success. I was thrilled to meet with the leading patient care providers in the U.S.. We will share the reports as they become available.

We are looking forward to the upcoming NIH ME / CFS meeting in Bethesda, Maryland on April 4 & 5 and seeing many of you in person or via Livestream. OMF is sponsoring the coffee breaks and lunches at the venue so that all participants can maximize this excellent networking opportunity. NIH registration is available here. We also look forward to seeing our friends at IiMEC14 in London at the end of May.

ME / CFS research momentum is growing. Thank you for sharing our vision to end ME / CFS.

With hope for all,


Linda Tannenbaum
Founder & CEO/President


OMF-funded Researchers Presented at Emerge Australia’s International ME / CFS Symposium

(Left to Right) Christopher Armstrong, PhD, Jonas Bergquist, MD, PhD, Ronald W. Davis, PhD, Robert Phair, PhD, and Wenzhong Xiao, PhD, all presented on March 14 at the Symposium.

 


Linda Tannenbaum Participates at ME / CFS Expert Clinician Summit

(Left) Dr. Lucinda (Cindy) Bateman, (Center) Mary Dimmock, (Right) Linda Tannenbaum, Daniel Peterson, MD, and David Kaufman, MD.

 


Science Team Meets at Stanford

Members of our Scientific Advisory Board recently met at Stanford University to discuss OMF-funded research. Participants included (left to right) Christopher Armstrong, PhD, Ronald G. Tompkins, MD, ScD, Janet Dafoe, PhD, Ronald W. Davis, PhD, Linda Tannenbaum, OMF Founder & CEO/President, Wenzhong Xiao, PhD, and H. Craig Heller, PhD. Not shown: Maureen Hanson, PhD, who participated remotely.

 


OMF Supports #IIMEC14

OMF will be an event sponsor at the Invest in ME Conferences (IiMEC) further cementing our supportive relationship. In addition, Invest in ME Research has announced that Dr. Ron Davis and Dr. Ron Tompkins will be presenting at both the 2019 Colloquium and Conference to share updates on OMF-funded research.

The 14th Annual Biomedical Research into ME Colloquium  (BRMEC) will be held May 28-30 in London followed by the International Invest in ME Conference on May 31. Linda Tannenbaum and other members of our Scientific Advisory Board will also be attending. Registration information is available here. If you will be attending, be certain to stop by the OMF table.

 


Welcoming New Foundation Board Members

We’d like to welcome two new members to our OMF board: Katie Bach, Managing Director of the Good Jobs Institute, a nonprofit (left), and Carol E. Jensen, Chief People Officer and Senior VP of Flatiron Health, a technology company (right). Together, they bring high-level strategic management and fundraising experience that can help our team at OMF achieve its mission of delivering hope and leading research to end ME / CFS and other complex chronic diseases.

We asked both new board members how their experiences might help contribute to OMF’s goals. Katie, who formerly directed global strategy at Starbucks, said, “Drawing on my background in strategy and strategic planning, I hope to help OMF build the foundations it needs to dramatically increase its fundraising.”

Carol, on the other hand, brings experience in marketing and human resources which she commented can help the organization strategically grow to have greater impact. Prior to being responsible for human resources at Flatiron, Carol was Chief People Officer for Wawa, a fresh food and convenience retailer with annual sales over $10 billion and more than 29,000 associates.

We thank both new members for joining the board and look forward to scaling our fundraising and footprint with their expertise and support.

To read Katie’s and Carol’s full bio and meet our other board members, visit our website.


 

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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