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

OMF-Funded Research Overview 2018


OMF-Funded Research 2018

I am proud to share with you the new and expanding research projects that we are funding this year. As we have recently shared, research is quickly expanding. We look forward to continuing to share updates with you about our exciting Collaborative Research Centers at Stanford and Harvard and all of our research projects. We invite you to continue to support our efforts to fund these teams of expert scientists pursuing our common goal: End ME / CFS.

We are confident that our research is leading us to answers. To keep this momentum growing, we count on your support. Whether you can donate $5, $500, or $5,000, every gift makes a difference in supporting research and delivering hope. Please donate today.

And please help us to grow by spreading our news. Forward this email to your family and friends and invite them to personally sign up to receive our news in their inbox to stay informed.

I am looking forward to seeing all who are attending the Invest in ME Research International Conference next week in London. I will be attending the Conference and the Biomedical Research into ME Colloquium along with 6 of our scientific advisory board members. If you are attending, please come visit us at our table on June 1st so that we can say hello in person.

With hope for all,

Linda Tannenbaum
CEO/President
linda@omf.ngo


ME / CFS COLLABORATIVE RESEARCH CENTER AT STANFORD

OMF is continuing to fund the ME / CFS Collaborative Research Center at Stanford. These are the projects currently underway:

  • T cells and immunology

    Michael Sikora, in collaboration with Mark Davis, PhD, Lars Steinmetz, PhD, and Ron Davis, PhD, at Stanford University, will examine the role of T cells and immune-related genes in ME / CFS. This may help address the outstanding question of whether ME / CFS is an autoimmune or infectious disease, or simply an activation of the immune system. Click here to read more about the plans for this study.

  • Extended big data study in families

    Fereshteh Kenari Jahaniani, PhD, in collaboration with Mike Snyder, PhD, and Ron Davis, PhD, of Stanford University, are generating multiple large datasets (genomics, gene expression, metabolomics, proteomics, and cytokines) in a cohort of patients and their families. By comparing patients to healthy blood relatives, we are more likely to understand what genes cause or contribute to the development of ME / CFS. This data will also be integrated with the Severely ill Patients (Big Data) Study (SIPS) , providing important validation and extension of those findings. Read and watch more about the multi-omics approach.

  • Diagnostic and drug-screening technology development

    Four technologies are being developed that could provide a biomarker for ME / CFS. Dr. Davis’s team is dedicated to developing these into inexpensive tests that can be easily used in a doctor’s office. In the future, all patients will be measured on all of these diagnostic platforms, enabling us to compare their efficacy and determine what combination of them will be most useful to export for diagnostic testing. Click here to read more about the plans for this study.

    1. Nanoneedle: Rahim Esfandyarpour, PhD, in collaboration with Ron Davis, PhD, is validating and further developing the nanoneedle biosensor platform, which has shown promise as a blood-based diagnostic for ME / CFS. This is a nanofabricated device that measures electrical impedence from a drop of blood. Thus far, this test is able to distinguish ME / CFS patients from healthy controls. The technology will be optimized for easy clinical adoption and scaled up so that numerous FDA-approved drugs can be simultaneously screened as potential treatments. Click here to read more about why a blood-based diagnostic could be a game-changer.
    2. Magnetic Levitation Device: Gozde Durmus, PhD, in collaboration with Ron Davis, PhD, has been developing a magnetic levitation device. This device uses a ferrofluid in a glass capillary surrounded by permanent magnets. This generates a density gradient and cells move to their respective densities in the capillary. Their position is imaged by a camera from a smart phone. It was discovered that white blood cells from ME / CFS patients are less dense than healthy controls. One patient was followed for several months, consistently showing a light density. It was further observed that there was a correlation between the lightness of the cells and the severity of symptoms. This could be a very inexpensive diagnostic test, and more patients will be tested in 2018.
    3. Red Blood Cell Deformability Test: Mohsen Nemat-Gorgani, PhD, of Stanford University, and Anand Ramasubramanian, PhD, of San Jose State University, in collaboration with Ron Davis, PhD, are developing a micro-fluidic device that measures blood flow and deformability of red blood cells. In preliminary results, the red blood cells of ME / CFS patients and healthy controls differ in their time of entry into a capillary, rate of movement through the capillary, and the extent of deformation of the cell in the capillary. This has the potential to be yet another biomarker that would only require a drop of blood. (More)
    4. Mitochondrial Function Test: Julie Wilhelmy, in Dr. Davis’s lab, has developed a protocol using the Seahorse instrument that measures mitochondrial function. This protocol reveals a significant difference between activated T-cells of ME / CFS patients and healthy controls. The instrument is commercially available, which will allow other laboratories to easily reproduce our results.
  • Metabolic Trap

    Dr. Robert Phair, PhD, of Integrated Bioinformatics, Inc, has been working with Dr. Davis’s team at Stanford. He has found a metabolic pathway in ME / CFS patients that he hypothesizes to be stuck in a “trap” in an unhealthy state. His metabolic trap hypothesis emerged from genetic and metabolomics data from the Severely ill Patients Study (SIPS) combined with published enzymatic kinetics using mechanistic computational modeling. Dr. Phair and the team are eager to test this hypothesis as fast as possible, as it could be the underlying cause of ME / CFS and lead to effective treatment. (MoreRead Health Rising’s article about the Metabolic Trap

OTHER EXCITING PROJECTS FUNDED BY OMF:

ME / CFS COLLABORATIVE RESEARCH CENTER AT HARVARD

OMF has newly awarded a grant totaling $1.8 million to establish a new ME / CFS Collaborative Research Center at Harvard. The new Harvard Center will be led by OMF Scientific Advisory Board members Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD, and will work synergistically with the ME / CFS Collaborative Research Center at Stanford led by Ronald W. Davis, PhD, of Stanford University, also funded by OMF. All science funded by OMF continues to be under the overall direction of our Scientific Advisory Board, directed by Ron Davis. Click here for more information.

Stanford ME / CFS Data Management and Coordination Center

OMF is also funding the expansion of the Stanford Data Center for the Severely Ill Patients (SIPS) Study to encompass all the data from the Stanford and Harvard ME / CFS Collaborative Research Centers, as well as data from any other research we are funding. The clinical results from the SIPS are currently already open to researchers with access via our website. This expanded data center will give researchers quick access to massive amounts of research data.

Analyzing Patient Data Study

This retrospective study aims to analyze the clinical records and test results of thousands of patients from 9 ME / CFS specialists. (More)

Hormones, Proteins, Autoantibodies

Jonas Bergquist, MD, PhD, is validating his autoantibody findings, as well as measuring proteins and steroid hormones in plasma and cerebrospinal fluid. (More)

Metabolomics Validation Study

Robert K. Naviaux, MD, PhD’s 2016 ME / CFS metabolomics study is being expanded to include additional validation studies with Oliver Fiehn, PhD, and his team at the West Coast Metabolomics Center (WCMC), University of California, Davis (UCD). (More)

Second Annual Collaborative Team Meeting on the Molecular Basis of ME / CFS at Stanford University

This year our collaborative team meeting will be expanded to three days, September 26-28. The first two days will allow for in-depth scientific discussion of recent ME / CFS research results. On the third day we will establish collaborations and discuss the most effective path forward to expedite ME / CFS research. At this groundbreaking scientific conference, over 30 international researchers will share unpublished data and ideas. Sharing unpublished data is a very effective way to accelerate the research because scientists can consider these results without waiting for publication. This interdisciplinary team of experts in numerous fields, including Nobel laureates, and several members of the National Academy of Sciences, will discuss genetics, metabolism, immunology, data integration, related diseases, drug discovery, and lessons from these and other fields for ME / CFS research.

Second Annual Community Symposium on the Molecular Basis of ME / CFS at Stanford University – September 29

The Community Symposium will take place on Saturday, September 29. At the Community Symposium, the scientists will update patients and any interested members of the public on the latest research and our progress towards understanding the molecular basis of ME / CFS and our plans for the future. Come hear from our amazing team in person. If you can’t attend, the symposium will be livestreamed. Registration information for the Community Symposium will be coming out soon.

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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