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

August Newsletter

3rd Annual Community Symposium Registration Open

Registration is open for the 3rd Annual Community Symposium on the Molecular Basis of ME / CFS at Stanford University, sponsored by OMF, on Saturday, September 7, 2019.

To attend the event in person at Stanford University, click here to register.

To watch the event via Livestream from anywhere around the world (in English only), click here to register.

Confirmed speakers to date include:

Register by August 26.

 


Post-Exertional Malaise in ME / CFS

OMF Science Liaison Dr. Chris Armstrong has recently published a paper on post-exertional malaise (PEM) in ME / CFS patients,

Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME / CFS Cases. Authors: Neil R. McGregor, Christopher W. Armstrong, Donald P. Lewis and Paul R. Gooley. Diagnostics 2019, 9(3), 70.

 


RME Sweden Donation to Support Research in Sweden

Thank you to our friends at RME Sweden (Riksförbundet för ME-patienter) for your latest donation to support research at Uppsala University. Since joining forces, RME Sweden has donated over $140,000 USD (1,326,444 SEK) to OMF. An ardent supporter of OMF, RME Sweden shared that all restricted for research donations that they receive are donated to OMF “to secure scientific quality and to guarantee the independence of the researchers.”

Kerstin Heiling, RME Sweden Chair and International Coordinator said, “We are very grateful to OMF, not only for helping us with scientific supervision, but also for support far beyond the contributions that we can make.” Thank you to our partners in Sweden for your continuing support to advance this urgent research.


Support research to end ME / CFS.

 

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