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

Study of the possible conversion of COVID-19 patients to ME / CFS

Open Medicine Foundation is excited to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae to ascertain whether they convert to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) and to study the molecular transformation if it occurs.

This will involve  collection of body fluid samples at frequent intervals, continuous health monitoring via wearables and symptom data recorded at many separate timepoints over the course of 2 years. The expected outcome is that some will develop ME / CFS, because it is known that many other viruses serve as triggers for the disease.

This is a unique opportunity to study the biological factors that may determine or predict the development of ME / CFS.

In a significant percentage of patients, serious 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 a post-viral fatigue, which may last six months or more before returning to their previously 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 focussed on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides an unprecedented opportunity for the world to finally pay appropriate attention to ME / CFS.