The proposed study offers the direct clinical translation of our findings via our active and close affiliation with the Royal Children’s Hospital specialised Paediatric ME/CFS Rehabilitation Clinic. Through close collaboration with clinicians in this service, our research team is able to have a significant impact on the direct clinical care of children and adolescents with ME/CFS and the practices of clinicians and healthcare professionals working with these patients.
STUDY HYPOTHESIS AND DESCRIPTION
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is diagnosed by its symptoms, which include post-exertional malaise, fatigue, sleep disturbance, pain and cognitive impairment. Currently, there is no biomarker for diagnosis, and it is unclear how symptoms arise to create this chronic pathological state. Research into potential disease mechanisms in adolescents with ME/CFS is severely limited, despite adolescence representing a major age peak in the incidence of ME/CFS.
The outcomes of this project are to discover novel metabolic biomarkers in ME/CFS, link metabolism to the fluctuation of symptoms, determine mitochondrial function in ME/CFS, and produce a plethora of new knowledge for the field of ME/CFS.
Paediatric ME/CFS patients from the Royal Children’s Hospital’s Paediatric ME/CFS Clinic will be invited to participate in our study. We would first collect a blood sample and urine sample in conjunction with a symptom survey, questionnaire, and cognitive assessment. We would then engage consenting participants in a longitudinal study with wearable health technology while collecting urine and blood microsamples from patients over time.
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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.
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