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

ME/CFS Research Data: the heart of the matter

#MayMomentum research news!

ME/CFS Research Data: the heart of the matter

With your support, Open Medicine Foundation funds open, collaborative research so that, as soon as possible, precise diagnostic tools and life-changing treatments can be available to people with ME/CFS and related chronic, complex diseases such as Post-Treatment Lyme Disease Syndrome, Fibromyalgia, and Post-COVID Syndrome.

Each OMF funded study is selected, with oversight from our prestigious Scientific Advisory Board, for its ability to provide meaningful data that will fuel the search for treatment and diagnosis. This data is essential to develop diagnostic technologies, understand the molecular basis of the diseases, and uncover effective diagnostic tools and treatments. Because of the contributions from thousands of individuals just like you, over 20 studies have been completed or are underway across five ME/CFS Collaborative Research Centers.

Wenzhong Xiao, PhD, is co-director of The Harvard ME/CFS Collaboration and a world expert in computational genomics. We are thrilled to share this update from Dr. Xiao on his efforts to analyze and integrate the data from OMF funded studies, an essential step in developing diagnostics and treatments.

Wenzhong Xiao, PhD

From the desk of Wenzhong Xiao, PhD
Harvard University

The number of studies of ME​/​CFS is proliferating. There is an urgent need to conduct computational analysis of the resulting data to uncover the molecular mechanism and identify therapeutic targets of ME​/​CFS.

Focusing on data from the five OMF funded ME​/​CFS Collaborative Research Centers, my team strives to understand the molecular mechanism of ME​/​CFS from the genomic, proteomic, metabolic, and immunologic perspectives.

Sample projects include: 

Data Sharing in the OMF ME​/​CFS Data Center.

  • Data is organized and managed in the OMF–funded ME​/​CFS Data Center. Raw data and processed results are shared with our research network through the web-based data portal.

Multi-omics of invasive cardiopulmonary exercise test (ICPET) of ME​/​CFS in collaboration with the Harvard Center.

  • Post-exertional malaise is a hallmark of ME​/​CFS, and the iCPET provides a unique opportunity to investigate the molecular mechanism
  • Sequence Analysis of Viruses and Other Microbes will be performed on DNA and RNA viruses, bacterial pathogens such as Borrelia, and parasites

Systems biology on the disease mechanisms of ME​/​CFS

  • This project will integrate studies in ME​/​CFS with studies of other well-known diseases to discover the molecular mechanism and identify therapeutic targets of ME​/​CFS.

Computational analysis plays an essential role in OMF’s research strategy and The End ME​/​CFS Project conducted within the ME​/​CFS Collaborative Research Network. I am honored to be part of an outcomes-focused, transparent, and multi-pronged approach to finding answers for people living with ME​/​CFS and other chronic, complex diseases.

Please support our cutting-edge, privately funded research strategy and effort to sustain the invaluable work of  Dr. Xiao, Dr. Davis, Dr. Tompkins, Dr. Bergquist, Dr. Moreau, Dr. Armstrong, and their talented teams.

With your help, we will keep up the momentum and win this fight!

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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