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Coronavirus Disease 2019

Halloween Nightmare: The Long-Hauler Tragedy

Here's how individuals with long-term illness outcomes can be supported.

Imagine waking up one morning and feeling sicker than you have ever felt. You have had a bad case of the flu before, so you reason you will get over this infection and soon recover. As the days pass, new unusual and concerning symptoms appear, like the inability to taste or smell, but you continue to believe that you will overcome these symptoms.

Days and weeks pass, the symptoms still persist, and the fatigue is so overwhelming that you continue to cut back on work and family responsibilities. You have entered a new world, one that is increasingly socially isolating, and now you have debilitating symptoms that feel overwhelming.

This is the COVID-19 nightmare for many people, called “long-haulers,” who have not recovered after several weeks of being infected with COVID-19.

Some suggest 50 to 80% of those who become ill from COVID-19 have persistent symptoms, but even if it were only 10%, there would still be hundreds of thousands of people in our country affected. Among these long-haulers, some have identifiable biological damage to the lungs or heart, but others will not have any recognizable biological markers. While both groups will suffer from the trauma of COVID-19, those without clear biological impairments will encounter a second phase of trauma from the reaction—disbelief in the severity of their condition.

For the past 30 years, another group has suffered from the trauma of an illness and then society’s reaction to their disability. The illness is chronic fatigue syndrome. These patients, who prefer the less-stigmatizing term myalgic encephalomyelitis, have a very similar predicament to many COVID long-haulers.

Because most primary care physicians are unable to detect any biological abnormalities, patients with myalgic encephalomyelitis are often considered to suffer from depression, and health care workers often prescribe anti-depressants and a recommendation to work out a few times a week in order to overcome their illness. Such treatments are often effective when a person has a primary depressive symptom, but when a person with myalgic encephalomyelitis who already suffers extreme fatigue and post-exertional malaise is encouraged to engage in formal exercise, a relapse is very likely. With primary care professionals expecting a quick resolution of their illness, and many work associates and family members subscribing to this false rendition of their illness, it is not too surprising that almost all patients feel demoralized, not depressed.

What are the lessons we can learn from these patients who have experienced decades of marginalization and victimization by our health care system? Similar to those with myalgic encephalomyelitis, many COVID-19 long-haulers are ready to or in the process of falling off a cliff, into a barren landscape filled with undermining messages invalidating their illness experience. They want to be heard and understood. They want our compassion, but instead they receive an unmerciful rejection from a society that values abundant energy and productivity.

Those with COVID-19, as well as over one million with myalgic encephalomyelitis, deserve our attention, our respect, and to be treated in a humane way throughout their illness. Rather than dismissing their symptoms as a neurotic flight into hysteria, we need to validate their illness experience and recognize that what they are undergoing might help medicine better understand complex diseases. The research that poured into understanding HIV allowed us unparalleled insights into the origins of other infectious diseases like Ebola, Zika, and influenza. Long-haulers and those with myalgic encephalomyelitis experience illnesses that affect multiple systems, and are often considered to have unexplainable reasons for these post-viral symptoms. But there are dozens of other illnesses that are today considered unexplainable, such as back pain, and one day we will know the causes. As we engage in basic research, and treat and learn from these patients, we will ensure that they have not suffered in vain, and ultimately be able to transform our health care system to one that does a much better job of explaining many complex and challenging illnesses.

More from Vernita Perkins, PhD and Leonard A. Jason, PhD
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