Charlie McCone is a 32-year-old man who was once fit, biked 10 miles a day and, prior to the onset of long COVID, never had any health problems. That’s changed now. McCone says he can’t work or even leave his home. His breathing is still difficult and his brain doesn’t work right. His partner has become his full-time caregiver. In short, he says, long COVID has wrecked his life, which he calls a “living nightmare.” 

Unfortunately, he’s not alone. Data show that millions of Americans suffer from long COVID. What’s more, at a long COVID rate of 10%-30% of all infections, we’re living through “the greatest mass disabling event in human history,” says McCone. 

Though long COVID is still fairly new to the scientific community, knowledge is rapidly advancing. Given the condition’s profound impact on public health, McCone poses four questions to researchers and policymakers.

Why don’t we have diagnostics yet for microclots?

Many long COVID patients have experienced a minimization of their symptoms by healthcare professionals due to negative lab results to standard tests. While diagnosis and treatment of long COVID remains inadequate, new diagnostics have found specific abnormalities in disease development. One standout technique is using fluorescence microscopes to find amyloid microclots, which have been found in every patient tested in research thus far. The method involves a simple blood draw and the results could help patients immediately.

Why isn’t this simple lab draw being employed by long COVID clinics? The test is so easy, McCone notes, that patients are “sneaking into labs after hours” to have it done. He encourages lab clinics to incorporate this simple method into their diagnostic protocol for long COVID. 

Why is there still no public health warning?

We’ve known how widespread and intense long COVID is for more than a year, but we still have a largely unaware public. One in 1,000 people affected qualifies as a “medically rare event,” yet long COVID impacts one in 20 by the most conservative estimate. “This is a condition that is not rare,” the Mayo Clinic has stated.

McCone equates the silence around long COVID with misinformation about the risk of infection, and vaccine risk. What’s more, research shows that what public awareness exists concerning long COVID encourages adherence to public health guidelines, including getting vaccinated. He suspects the reason this awareness isn’t happening centers around an inherent conflict: you cannot warn the public of a one-in-10 risk of chronic illness, even from mild coronavirus infection, while promoting a policy of “living with COVID” in which the virus becomes endemic, like a “mild seasonal flu.”

Promoting a strategy that ignores long COVID in order to maintain economic and societal stability is not just immoral, but “severely flawed,” says McCone. The hard economic impact of long COVID is already being felt. In the U.S., for example, some 1.6 million workers have already been sidelined by the illness. He argues that if we want a return to normality, people need to be informed about long COVID risk, and we need to finally acknowledge disability from the illness when measuring the pandemic’s impact.

Why haven’t we started meaningful treatment trials?

McCone is enrolled in the National Institutes of Health’s RECOVER Initiative, which intends to spend the first few years observing before considering treatments. With an illness affecting 10%-30% of all people infected by COVID, “Do we have time to wait two years or more until meaningful treatment trials begin?” he asks.

Besides microclots, dozens of case studies have already shown promising treatments for clear abnormalities including: 

• Autoantibodies
• Dysregulated immunity
• Endothelial dysfunction
• Viral persistence 

Why these findings haven’t spurred clinical trials confounds patients and makes no sense economically, politically, or medically, he says. There is sufficient data to fast-track small trials right now. “Multi-year observational studies are not going to cut it.”

What is the plan to support those who’ve lost their jobs and housing due to long COVID?

Even though McCone’s short-term disability is about to expire, he is fortunate to have a safety net of a supportive employer and family, good health insurance, and a team of understanding clinicians. Yet not everyone is so lucky. 

Countless careers are being destroyed, pushing many who are less fortunate into financial uncertainty and homelessness. Long-term disability claims are overwhelming the current system and most are being denied. Through no fault of their own and without prior warning of the risk, millions have been thrust into these long-term circumstances, and many feel that they have been left to fend for themselves. 

Despite knowing that people become disabled from pandemics, policymakers failed to prepare.

McCone says he will continue to push for the unmet needs of long COVID sufferers, adding that it’s “clear we’re waiting for our governments, medical and public health institutions, and the media, to catch up with the science.”

*McCone, C. (2022, March 30). We need answers to these four long Covid questions. The Guardian. https://www.theguardian.com/world/commentisfree/2022/mar/30/long-covid-coronavirus-covid-pandemic-health