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

At symposium, researchers and patients examine molecular basis of Chronic Fatigue Syndrome

Ron Davis of Stanford University, Director of the OMF Scientific Advisory Board.

by Raeka Aiyar, PhD

Ron Davis, PhD, calls Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis, or ME / CFS) the “last major disease about which we know almost nothing.” That’s because at least a million Americans are debilitated by ME / CFS, and yet no clear cause is known, no treatments are approved; funding, understanding, and awareness are disproportionately limited. Yet thanks in part to a boost in advocacy and fundraising efforts, there is increasing cause for hope, many researchers and patients believe.

Earlier this month, several hundred researchers, doctors, patients and caregivers joined forces for the Open Medicine Foundation’s Community Symposium on the Molecular Basis of ME / CFS chaired by Davis at Stanford University, with another 2,700 worldwide joining online. Known for his contributions in biotechnology and genomics, Davis has rerouted his career to tackle this disease and save his critically ill son. He’s brought together an interdisciplinary team of collaborators, many of whom spoke at the symposium. “The Human Genome Project taught us that we can take on a large project like this and succeed,” Davis said.

The team of scientists brought together by Ron Davis for the Community Symposium on the Molecular Basis of ME / CFS.

The event focused on a new understanding of ME / CFS as a molecular disease. Davis’ team has taken this perspective in an omics and big data study of severely ill patients. Wenzhong Xiao, PhD, Davis’ collaborator at Massachusetts General Hospital and Harvard Medical School, presented a preliminary analysis of this dataset, including efforts to use it to define biomarkers and predict causative factors.

Davis presented his technology-driven approach to unraveling ME / CFS, noting that if sequencing technologies had been available at the time, “we would have figured out AIDS in a couple of weeks.” He presented a nanotechnology developed at the Stanford Genome Technology Center that can successfully distinguish patient blood samples from healthy ones, based on their response to stress in the form of increased salt concentration. This presents the potential for a blood-based diagnostic – a transformative prospect for a field reliant on lengthy, subjective diagnoses.

A core issue in ME / CFS is massive energy depletion, so much research is focused on the mitochondria, the organelles inside cells that are responsible for energy generation. Keynote speaker and mitochondrial physiologist Robert Naviaux, MD, PhD, from the University of California, San Diego, suggested that the ‘cell danger response’ to stressors, which prevents cells from returning to baseline function until healing is complete, is prolonged in ME / CFS, which is consistent with observations of reduced metabolism in patients.

Naviaux’s theory also syncs with reports of common infections triggering the development of ME / CFS. In fact, Davis’ cell-free DNA sequencing revealed no exceptional types or levels of pathogens in patients. “It’s not the stressors themselves, but an inability to resolve them and heal afterwards,” Naviaux said.

Stanford immunologist Mark Davis, PhD, presented evidence suggesting that ME / CFS could be an autoimmune disease: using single-cell sequencing, his lab has observed an increase in patient T cells that share a particular target, a signature of an immune response. He said he is investigating what these T cells are targeting.

Nobel laureate Mario Capecchi (University of Utah).

Nobel laureate Mario Capecchi, PhD, from the University of Utah, presented a study in mice that shows a connection between the immune system and the brain in a genetic condition that shares some traits with ME / CFS. He also noted how important patient participation is in studying any disease, and how impressed he was with the ME / CFS patient community.

With so much patient engagement, collaboration, and community spirit – not to mention the many theories and new datasets, researchers say it is an exciting time for the field. Many attendees said they were amazed at how much has been accomplished with such scant resources. The event closed with a standing ovation.

To support ME / CFS research, please donate to OMF today. For more about the symposium, check out the YouTube video of the event, or see coverage in The Mercury News.

A version of this post originally appeared on the Stanford Medicine Scope Blog.

Our Community Symposium closed with a standing ovation for all of the outstanding efforts presented.

Raeka Aiyar, PhD, is the Director of Scientific Strategy and Communications at the Stanford Genome Technology Center.

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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