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

OMF Scientist Receives Grant for ME/CFS research from the NHMRC in Australia

Open Medicine Foundation is excited to announce that our Science Liaison, Christopher Armstrong, PhD has received a grant of $784,000 for ME / CFS research from the National Health and Medical Research Council (NHMRC) in Australia.  The NHMRC is the primary agency of the Australian Government responsible for medical and public health research. This is one of the first biomedical research projects to be funded by the Australian government to investigate ME / CFS.

Dr. Armstrong received the research grant in collaboration with Professor Paul Gooley at the University of Melbourne and Associate Professor Adam Scheinberg, Dr. Sarah Knight, and Dr. Elisha Josev at the Murdoch Children’s Research Institute.

This research proposal seeks to understand pathological mechanisms of paediatric ME / CFS (13 to 18 years old) using metabolomic, proteomic and genomic approaches. They have chosen to examine ME / CFS in this understudied group as the disease is likely to be at an early stage. Further, the social, developmental, and economic impact of the debilitating symptoms of ME / CFS on young people and their carers is significant and deserves focussed research.

There are two main parts to the study: an initial case-control comparison study; followed by a longitudinal study. The case-control comparison study will identify differences between ME / CFS and healthy cohorts in their metabolites, proteins, genes and the way they process amino acids, fats and carbohydrates for energy production. The longitudinal study will assess the metabolism of the ME / CFS during ten self-identified “good” and “bad” days. During a “good” or “bad” day, the patient will provide a self-assessment of symptom severity and a blood micro-sample and 24-hour urine will be collected for metabolomics analysis. During the longitudinal study, participants will have wearable technology and a phone application that will enable them to update symptom changes.

Complex diseases such as ME / CFS will often have an etiological mechanism that entails predisposing, triggering, and maintaining factors. The variety of factors that can lead to the disease, taken with the variety of symptoms expressed by those that suffer ME / CFS, suggest the underlying basis of the disease needs to be a broad biological anomaly with layers of anomalies that are specific for individuals and help define their pathogenesis. The combination of deep profiling with longitudinal sampling enables patients to be compared to themselves during “good” and “bad” days, which will help observe the biochemical signatures that relate to the disease or symptom expression.

Our research findings have the potential to identify diagnostic biomarkers of the condition, aid in prognosis and development of novel treatments, and improve the lives and futures of children with ME / CFS. Ultimately, this study will benefit people of all ages with ME / CFS by improving our understanding of the disease pathogenesis for the further development of specific treatments.

 

 

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.

###

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