ME / CFS and
Post COVID Syndrome
From the NIH/NINDS
Some of the symptom clusters reported by people still suffering months after their COVID-19 infection overlap with symptoms described by individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). People with a diagnosis of ME/CFS have wide-ranging and debilitating effects including fatigue, post exertional malaise (PEM), unrefreshing sleep, cognitive difficulties, postural orthostatic tachycardia, and joint and muscle pain. Unfortunately, many people with ME/CFS do not return to pre-disease levels of activity. The cause of ME/CFS is unknown but many people report its onset after an infectious-like illness. Rest, conserving energy, and pacing activities are important to feeling better but don’t cure the disease. Although the long-term symptoms of COVID-19 may share features with it, ME/CFS is defined by symptom-based criteria and there are no tests that confirm an ME/CFS diagnosis.
ME/CFS is not diagnosed until the key features, especially severe fatigue, post-exertional malaise, and unrefreshing sleep, are present for greater than six months. It is now becoming more apparent that following infection with SARS-CoV-2/COVID-19, some individuals may continue to exhibit these symptoms beyond six months and qualify for an ME/CFS diagnosis. It is unknown how many people will develop ME/CFS after SARS-CoV-2 infection. It is possible that many individuals with ME/CFS, may benefit greatly if research on the long-term effects of COVID-19 uncovers the cause of debilitating symptoms including intense fatigue, problems with memory and concentration, and pain.
Open Medicine Foundation Collaborative Network is conducting an international, multi-year study to unlock the triggering mechanisms of ME/CFS as revealed through the study of Post-COVID Syndrome patients.
Post-COVID Syndrome to ME/CFS
A potential second pandemic
Open Medicine Foundation’s (OMF) mission is to look for every opportunity to accelerate research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other chronic, complex diseases. We are deeply distressed by the millions of COVID-19 patients who have failed to fully recover and will potentially suffer from the debilitating impacts of ME/CFS.
The OMF Collaborative strongly believes that for people with ME/CFS there may be a silver lining to the COVID-19 pandemic. Researchers now have the opportunity to study COVID-19’s potential conversion to ME/CFS, providing incredible insight into the disease so they may find drug targets and prevention strategies at an accelerated pace.
While the federal government is only now investing in “Post-Acute Sequelae SARS-CoV-2 infection (PASC) or “Post-COVID Syndrome,” OMF has already begun the only large-scale study of its kind, one that is currently solely supported by private donors. In 2020, OMF secured a $1 million grant to launch the first year of an international, multi-year study across the five OMF funded Collaborative Research Centers (CRC). The aim of this study is to examine Post-COVID Syndrome transitioning to ME/CFS. We are actively working to raise an additional $2 million for years two and three of the study.
I am pleased to share with you an update on the first phase of this groundbreaking — and urgently needed — research project:
The ability to monitor the development of ME/CFS from a known viral infection is unprecedented to date and crucial to our understanding of the disease. The CRCs have initiated the collection, extensive testing and analysis of COVID-19 patient samples.
My colleague, Dr. Jonas Bergquist, Director of the Uppsala Collaborative Research Center, has shared that as of February 2021:
“We have now done proteomics (the large-scale study of proteins) and metabolomics (an analysis of the metabolism) in cerebrospinal fluid (CSF) and blood plasma from about 40 Intensive Care Unit COVID-19 patients. Our next step will be the large-scale metabolomic study of plasma from a larger cross-section of less severe COVID-19 patients (where we have no possibility to collect CSF) not admitted into the ICU.
In parallel, we are performing CSF proteomics and blood plasma metabolomics in around 50 Herpes Simplex Encephalitis patients (a rare infection with a related neurological disorder). The data from this cohort will provide a valuable baseline for neuroinflammation (an inflammatory response within the brain). As we are also running both CSF and plasma analysis from ME/CFS patients in the same investigation, we have a unique opportunity to compare and learn from COVID-19, HSE and ME/CFS patients.”
Example of tests to be performed at the CRCs:
- Extracellular DNA (Viral reactivation and Mitochondrial DNA)
- Immune Cell Profiling
- Leukocyte Genomics
- Micro RNA
- Microvesicles and viral sequencing
We hope that our studies in blood and CSF samples will help us be able to identify proteins and large molecules (e.g., antibodies) and small molecules that appear or disappear as ME/CFS develops, helping to advance our understanding of the biological triggers for this disease.
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The world is intensely focused on COVID-19 and must finally grapple with its long-term consequences. At OMF, we believe our mission to understand and treat ME/CFS is now, in many ways, intertwined with the plight of the COVID long haulers. This high-profile study is our chance to insist the world finally pays attention to ME/CFS.
OMF hopes to raise an additional $2 Million to complete the COVID-19 Study. Please support OMF and its urgently needed research of ME/CFS. Too many people already suffer from this debilitating disease, and now millions more are at risk.
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Disclaimer: This website is for informational purposes only. The information provided on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.