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

OMF-funded research: T cells and molecular immunology

It’s #OMFScienceWednesday! For the next few weeks, we will be describing the research projects that OMF is funding all over the world. The first project is about T cells and molecular immunology of ME / CFS, at the ME / CFS Collaborative Research Center at Stanford under the direction of Dr. Ron Davis. This project is a collaboration with Stanford professors Dr. Mark Davis, an expert in immunology, and Dr. Lars Steinmetz, an expert in genetics and gene expression. We are hopeful that it will provide a new level of understanding into the immunological basis of ME / CFS.

Many studies have highlighted issues with the immune system in ME / CFS, ranging from altered cytokines to impaired NK cell function. Recently, Dr. Mark Davis’ team discovered evidence of clonal T cell expansion in ME / CFS patients – meaning that the killer T cells responsible for eliminating infected cells are making copies of themselves. Expansion happens when there is an active infection that the immune system is fighting, but it can also happen in autoimmunity, when the immune system mistakenly attacks the body’s own cells. Dr. Steinmetz’s team has developed new technologies to sequence single T cells and measure their gene expression. Understanding the behavior of these expanded T cells and what they are targeting will help us to better understand – and hopefully treat – ME / CFS. For example, it’s possible that some patients’ T cells are reacting to a microbial infection, and that some may have a truly autoimmune disease – which could in turn point to treatment via antimicrobials or immunomodulation.

To explore these possibilities, this project includes the following objectives, in a group of 25 ME / CFS patients this year:

  1. Capturing and sequencing single T cells using these new technologies for identifying clonally expanded T cells and measuring their expression of thousands of genes, to understand their function in ME / CFS. The technologies were pioneered in tuberculosis patients, and the team is now hard at work optimizing them for ME / CFS patient samples.
  2. Sequencing key immune-related genes: HLA and KIR. These genes – whose variants are associated with risk for infectious and autoimmune disease – are very difficult to sequence using traditional methods, so Dr. Ron Davis and his collaborators have developed better methods! Applying them here may help to interpret the other immunological data from this project.
  3. Identifying the targets of expanded T cells. These may be infectious or autoimmune targets, and as described above, identifying them will reveal important insights into ME / CFS and its effects on the immune system of these patients.

Read last week’s post for more on what T cells do in the immune system.

Check out this video of how T cells patrol the body for threats including cancer cells and infected cells:


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.


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 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.


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.


Heather Ah San

Development and Communications Manager