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

University of Bergen: Finding the cause of Chronic Fatigue Syndrome/ME

The research group around Karl Johan Tronstad at the Department of Biomedicine has been granted 9.5 million to investigate the causes of Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis CFS/ME.

The project “Defective Energy Metabolism in ME / CFS” is one of four projects towards user-identified research on CFS/ME, that have been granted funding from the Norwegian Research Council. The announcement has been a new approach by the Research Council, which uses input from patients, relatives, and therapists to identify research needs.

Researchers in Bergen will respond to these needs by investigating whether metabolic disorders are involved in the disease mechanism for this serious and relatively common condition. The project is building upon close cooperation with Professor Olav Mella and Øystein Fluge at the Department of Oncology and Medical Physics at Haukeland University Hospital, and has received support from The Kavli foundation for several years.

The research group of Mella and Fluge has coordinated the collection of samples from over 200 ME / CFS patients and 100 healthy control subjects in a research biobank. This biobank will now be used to study molecular mechanisms in the laboratory. Among other things, changes in the patient’s energy metabolism will be mapped by measuring biochemical changes in the patient’s blood (called metabolomics). At the same time, it will be investigated whether hereditary changes in genes can explain increased disease risk. This is done by means of exome sequencing, comparing genes of sick and healthy family members. This will identify key factors, which will be the starting point for further mechanistic laboratory studies.

The researchers have previously been successful in finding that the function of a metabolic enzyme, pyruvate dehydrogenase, is inhibited in ME patients. This inhibition probably means that the patient’s cells have less energy available, and it leads to exaustion and fatigue. The study was published in the Journal of Clinical Investigation Insight last December. Based on this finding, the hypothesis is that ME patients have limitations in the ability to generate energy (ATP), as well as increased effort-induced production of lactate. Additionally, there are several indications that ME / CFS may be due to a malfunctioning immune response.

The main objective of this project is to acquire new knowledge of ME / CFS mechanisms to promote the development of new treatment methods and biomarkers. The project will receive support for 3.5 years and will start in July 2017.

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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