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Jonathan Hawkins: COVID-19 and chronic fatigue syndrome

Everyone knows who is at risk from COVID-19 — the elderly and unhealthy. However, that isn’t the whole story. Experts now understand that around 35% of those who catch COVID-19 remain ill for longer than the expected two- to three-week recovery time line.

This prolonged illness is not limited to those whose symptoms were severe. The affected are often younger, healthier people who were only ever mildly symptomatic. Yet they fail to make a timely recovery and deal with profound exhaustion, neurological issues and other disabling symptoms for weeks and even months after tests no longer detect the virus in the body.

The name for this phenomenon is “long COVID.”

Some of its symptoms, like shortness of breath, can be traced to organ damage caused by the virus. Others, like a cognitive slowdown called “brain fog,” currently defy scientific explanation. Fortunately, most people with long COVID appear to recover on their own in time. But not all are so lucky — months of disability and an uncertain future is the harsh reality for some.

They are not alone. Science has known for decades that many people develop a highly similar clinical picture to long COVID after viral illness. For instance, 27% of those infected during an earlier coronavirus pandemic — the 2003 SARS outbreak — were left with a years-long illness. As are 10% of those infected by Epstein-Barr virus (the cause of mononucleosis), Ross River virus and Coxiella burnetii.

The name for this post-viral illness is myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), and I am unlucky enough to have suffered with it for over half my life. In 2008, when I was a healthy 13-year-old, I came down with mononucleosis and never recovered. This marked the end of a future in which I grew up to attend college, start working or become an independent adult. Instead, my ME/CFS has confined me to my house and bed for the last 14 years. Now 27, I’m so ill that I can’t feed, bathe or take care of myself.

ME/CFS is not a rare disease — it affects between 1 million and 2.5 million Americans. According to the Centers for Disease Control, the functional impairment in ME/CFS is comparable to very severe medical conditions like multiple sclerosis, AIDS and end-stage renal disease. One in four patients is home or bed-bound for long periods of their illness — sometimes decades. Most lose the ability to work, and all told, the disease drains our nation’s economy of $17 billion to $24 billion dollars annually. Despite this, ME/CFS remains a neglected illness. There are no FDA-approved treatments, and it receives far less research funding than similarly-burdensome diseases.

Dr. Anthony Fauci, the nation’s leading infectious disease expert, recently said that long COVID is “highly suggestive of ME/CFS.” Other leading experts have echoed this view. The exact nature of this relationship remains to be proven, but if even a small percentage of long COVID cases turn into ME/CFS, we are looking at an explosion of Americans with a debilitating, untreatable illness.

People with ME/CFS have watched the unfolding saga of long COVID with deep empathy for sufferers — but not surprise. We know first hand the lingering debility that can follow a viral illness, the despair from a lack of answers and treatment, and what it means for a virus to leave you alive but not really living.

Society’s inability to explain or treat long COVID now is the predictable result of our past neglect of post-viral illnesses. We should all be hoping that long COVID leads to increased attention and research funding for these life-ruining diseases — because they can happen to anyone.

Jonathan Hawkins lives in Nevada City.


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