Medical experts are still figuring out the long-term effects of COVID-19 on patients that have recovered. The lingering symptoms of the virus on people that have become 'long-haulers' may be dealing with chronic fatigue syndrome or myalgic encephalomyelitis (ME/CFS).
The severe condition is characterized by extreme fatigue, memory problems, muscle, and joint pain, and other symptoms shared with patients who have recovered from coronavirus. CFS may be triggered by a hormonal imbalance, an impaired immune system, or a viral infection such as COVID-19.
Earlier in July, Dr. Anthony Fauci mentioned that many have been experiencing postviral symptoms. It was "extraordinary how many people have a postviral syndrome" that resembled ME/CFS, according to Fauci.
Some long-haulers have remained ill for weeks while others have been sick for several months, struggling with shortness of breath, lapses in their memory, and easily getting tired. According to the US Centers for Disease Control and Prevention (CDC), more than one-third of diagnosed patients have not been back to normal health after testing positive with COVID-19.
Chronic Fatigue Syndrome & COVID-19
Ever since Terri Wilder was diagnosed with ME/CFS a few years ago, she's been working as a social worker and activist for marginalized communities by focusing on HIV programs. She had also learned that the Food and Drug Administration (FDA) has no approved drug treatment for her condition.
In 2015, the National Academy of Medicine reported that about 800,000 to over two million Americans suffer from ME/CFS, and many remain undiagnosed. Symptoms of the illness include post-exertional malaise, or being unable to recover from exercise, which many long-haulers have been experiencing as well.
Currently, Wilder worries that her condition will be experienced by potentially thousands of other American long-haulers. Alongside the Myalgic Encephalomyelitis Action Network, she facilitated a webinar for people with lingering symptoms of coronavirus.
Wilder shared her fear that exercise can make long-haulers and those with ME/CFS sicker. The CDC recommends that those with ME/CFS should learn to pace themselves or prioritize activity management to know their physical and cognitive limits. "Some patients and doctors refer to staying within these limits as staying within the energy envelope.''
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Keeping Track of Long-Haulers
Dr. Ami Mac of the Stanford Genome Technology Center said that the current pandemic gives researchers the "unprecedented opportunity to advance our understanding of postviral disease."
Alongside her team, scientists from the Open Medicine Foundation and other organizations are working on helping long-haulers and those with ME/CFS. 'This could result in a longstanding public health disaster leaving in its wake untold numbers of new sufferers of a condition that feels like a 'living death' for those of us afflicted' said Mac. Like Wilder, she also suffers from ME/CFS.
Collecting blood samples regularly from patients can also help the researchers keep track of any molecular changes that prevent the resolution of symptoms, shared Mac. They are currently working on an app where researchers can keep track of coronavirus patients and compare symptoms with ME/CFS symptoms.
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