I am posting the gist of the OMF newsletter that I got on 19th. Has this been posted already ?
Against the backdrop of COVID-19, Open Medicine Foundation (OMF) remains focused on finding the answers needed to win the fight against ME/CFS and other chronic, complex diseases. Today, because of the pandemic, an opportunity exists to increase the understanding of ME/CFS.
OMF is proud to announce a multi-year collaborative effort to unlock the triggering mechanisms of ME/CFS revealed through the study of post-COVID-19 patients. At the heart of this effort is the leveraging of the strategic relationship between our four Collaborative Research Center (CRC) Directors.
In the coming months, we will share details about the study and its progress. We will also continue to expand our efforts to raise the significant funding required to conduct this international study and to sustain the over thirty research and treatment projects currently underway at the four, OMF-funded CRCs.
The following overview was prepared by our CRC Directors, led by Ronald W. Davis, PhD. We hope that after learning more, you will choose to give today,
and support this transformative undertaking:
Conversion of COVID-19 patients to people with ME/CFS
"We are proud to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae (the medical term for chronic conditions after an illness) to ascertain whether they convert to ME/CFS and if it occurs, to study the molecular transformation.
This will involve the collection of body fluid samples at frequent intervals, continuous health monitoring via wearables, and symptom data recorded at many separate time points over two years. The expected outcome is that some will develop ME/CFS, as many other viruses serve as triggers for the disease.
The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME/CFS.
In a significant percentage of patients, severe viral infection preceded their development of ME/CFS. In this current COVID-19 pandemic, it seems likely that COVID-19 may also be a trigger, and that many people will develop ME/CFS.
It is thought that up to 11% of patients who had severe infections from Epstein-Barr virus (EBV), Q fever (Coxiella burnetii), or Ross River virus (RRV), and others, develop ME/CFS. Other studies following SARS and MERS suggest an even higher proportion (50%) develop ME/CFS or Fibromyalgia.
After COVID-19 patients recover from the acute phase of their disease, they may be at significant risk for a prolonged period of post-viral fatigue, which may last six months or more before returning to their previous normal state. However, for some patients, their fatigue may fail to resolve or become even more profound over these initial six months and continue indefinitely, converting to ME/CFS.
A detailed genomic, metabolic, and proteomic analysis over time will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME/CFS.
The world is intensely focused on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides a unique opportunity for the world to finally pay appropriate attention to ME/CFS."
Can we have detailed information on the 30 research and treatment projects which are currently underway ? Why is OMF so tight lipped ? If OMF gives us this info it will help boost our sagging morale and also help in generating funds for these projects.
Against the backdrop of COVID-19, Open Medicine Foundation (OMF) remains focused on finding the answers needed to win the fight against ME/CFS and other chronic, complex diseases. Today, because of the pandemic, an opportunity exists to increase the understanding of ME/CFS.
OMF is proud to announce a multi-year collaborative effort to unlock the triggering mechanisms of ME/CFS revealed through the study of post-COVID-19 patients. At the heart of this effort is the leveraging of the strategic relationship between our four Collaborative Research Center (CRC) Directors.
In the coming months, we will share details about the study and its progress. We will also continue to expand our efforts to raise the significant funding required to conduct this international study and to sustain the over thirty research and treatment projects currently underway at the four, OMF-funded CRCs.
The following overview was prepared by our CRC Directors, led by Ronald W. Davis, PhD. We hope that after learning more, you will choose to give today,
and support this transformative undertaking:
Conversion of COVID-19 patients to people with ME/CFS
"We are proud to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae (the medical term for chronic conditions after an illness) to ascertain whether they convert to ME/CFS and if it occurs, to study the molecular transformation.
This will involve the collection of body fluid samples at frequent intervals, continuous health monitoring via wearables, and symptom data recorded at many separate time points over two years. The expected outcome is that some will develop ME/CFS, as many other viruses serve as triggers for the disease.
The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME/CFS.
In a significant percentage of patients, severe viral infection preceded their development of ME/CFS. In this current COVID-19 pandemic, it seems likely that COVID-19 may also be a trigger, and that many people will develop ME/CFS.
It is thought that up to 11% of patients who had severe infections from Epstein-Barr virus (EBV), Q fever (Coxiella burnetii), or Ross River virus (RRV), and others, develop ME/CFS. Other studies following SARS and MERS suggest an even higher proportion (50%) develop ME/CFS or Fibromyalgia.
After COVID-19 patients recover from the acute phase of their disease, they may be at significant risk for a prolonged period of post-viral fatigue, which may last six months or more before returning to their previous normal state. However, for some patients, their fatigue may fail to resolve or become even more profound over these initial six months and continue indefinitely, converting to ME/CFS.
A detailed genomic, metabolic, and proteomic analysis over time will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME/CFS.
The world is intensely focused on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides a unique opportunity for the world to finally pay appropriate attention to ME/CFS."
Can we have detailed information on the 30 research and treatment projects which are currently underway ? Why is OMF so tight lipped ? If OMF gives us this info it will help boost our sagging morale and also help in generating funds for these projects.