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 Long Covid patients.
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 six 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:
OMF is bringing together all of its global collaborative network, across 5 research centers to carry out this global effort in several stages, using a $1,000,000 grant made specifically for this effort. This study seeks to understand pathological mechanisms that lead to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) after infection with COVID-19. By observing and taking samples from COVID-19 patients throughout their ICU visit, and at multiple points of time for 24 months after discharge from the ICU, and patients with initially less severe COVID but with severe sequelae and post-COVID complications.
Through a detailed examination of individuals from the point of early COVID-19 illness through their recovery and rehabilitation phase, or through a prolonged illness state, this study has an opportunity to reveal what causes one to fully recover versus those at high risk of developing ME/CFS. This data will be compared to the OMF-Funded Post-Viral Complications in Herpes Simplex Encephalopathy (HSE) study data to provide another post-viral contrast. This study design offers the chance to elucidate precise pathological mechanisms of ME/CFS and other post-viral illnesses, uncomplicated by factors associated with the chronicity of the illness, and the potential identification of diagnostic biomarkers and potential targets for the development of treatments for the future.
1.Collect data throughout the longitudinal study
2.Identify markers in the gene expression that are predictive of lengthy recovery or prolonged illness
3.Analyse inflammation markers in blood plasma and cerebrospinal fluid
4.Analyse metabolomics through urine and blood plasma samples
5.Collate the array of biological data collected to determine early predictive markers of ME/CFS after a significant viral trigger.
Updates from Phase 1
Updates from Phase 2
* The newly established clinic in Uppsala will continue the work of the OMF-Funded MultiCenter Collaborative Study on COVID to ME/CFS progression.
The clinic provides an opportunity to continue studying the disease process as it develops, and hopefully better understand ME/CFS. A subset of the previously critically ill patients will be monitored for disease progression over time alongside non-critically ill Long Covid patients who will also visit the clinic for continuing symptoms.
As with Phase 1 of the study investigators will use genomics, proteomics, metabolomics, and immunology to recover as many immune cells as possible, and to characterize their evolution to ME/CFS. Furthermore, we are studying the plasma and cerebrospinal fluid (CSF) to identify proteins and large molecules (e.g., antibodies) as well as small molecules that appear or disappear in association with the development of ME/CFS.
Latest updates from Montreal
Example of tests to be performed at the CRCs:
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.
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.