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

Visiting Norway, Home to Two of Our Newest Scientific Advisory Board Members (June 12)

I am in my fourth week of OMF’s European Tour of Hope and had the joy today of being able to meet with our Norwegian ME / CFS friends again. They welcomed me warmly in beautiful Oslo, a city surrounded by the most spectacular scenery, including fjords, lakes, mountains and forests. The Norwegian ME Association organized a conference in a large auditorium at the Oslo University Hospital, Rikshospitalet. There were over 200 people in attendance. I spoke following Dr. Katarina Lien, MD, PhD (Oslo University).

Dr. Lien (pictured) spoke in Florida at the 12th IACFSME conference (2016) on her findings that blood lactate increases more rapidly after an exercise challenge in patients with ME / CFS. Last night her talk focused on exercise intolerance and possible metabolic disturbances in ME / CFS, and she theorized as to whether ME patients have a basic disturbance in their energy metabolism.

I am very grateful to all those who attended my talk, and especially for this touching feedback we received: “I was present at your talk tonight, and oh my it was so uplifting! To hear about your projects gives me great hope for the future. My most heartfelt thank you’s to you and the entire OMF team.”

Norway is also home to our newest Scientific Advisory Board members, Dr. Øystein Fluge and Dr. Olav Mella (pictured below) (University of Bergen, Haukeland University Hospital). We are very honored and grateful that they accepted our invitation. Dr. Ronald W. Davis, Director of our Scientific Advisory Board and Director of the Stanford Genome Technology Center, recently said, “We are honored that these scientists are joining our team to end ME / CFS. I have tremendous respect for their work. I work very closely with our Scientific Advisory Board and look forward to creating a new partnership with them. These scientists have each made significant contributions to ME / CFS and related fields, and are committed to helping accelerate our research.”

Drs. Mella and Fluge will join our Collaborative Team Meeting and Community Symposium on the Molecular basis of ME / CFS along with over 30 experts in August (10, 11) for research meetings followed by the community symposium (August 12) where you as a patient can meet our scientists in person and hear first-hand the progress being made and future plans! To register and find more information, please visit: /community-symposium/

We hope to share more news and impressions from Oslo, including a video recording made by the Norwegian ME Association. I am now preparing for my talks in Sweden. I sincerely thank Rune Hoddevik, Trude Schei, Bjorn Wold (pictured) and so many others for their incredible organization and warm welcome in Oslo. I truly enjoyed visiting your beautiful country and its warm inhabitants.

Welcome to Team OMF!

With hope for all,

 

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