Physicians Among COVID Long-Haulers
Neurological complications plague doctors for months
by Judy George, Senior Staff Writer,
MedPage Today October 22, 2020
A tired woman laying back on the couch with her hands on her head
Months after he first developed COVID-19 symptoms in March, Paul Garner, MD, of Liverpool School of Tropical Medicine in England, still feels the effects of the disease.
Garner, who is also a coordinating editor of the Cochrane Infectious Diseases group, describes ongoing symptoms like "difficulty reading -- this is there all the time. I cannot read much and I cannot negotiate large documents. If someone sends me an email with a block of 800 words in one paragraph, I simply cannot read it."
He also has difficulty finding words. "This gets worse when I am fatigued," Garner told MedPage Today. "I cannot remember words, people. I had an episode of blindness in one eye. I have had very severe headaches, absolutely horrible. Tingling in my arms and legs. Tinnitus. Both slightly less now."
Garner is what is known as a "long COVID" patient, a person who may experience symptoms ranging from fatigue, pain, confusion, or headache, to shortness of breath weeks or months after SARS-CoV-2 infection.
In the wake of COVID-19 surges, thousands of patients have reported long-term symptoms, and programs focused on these patients have started popping up at hospitals across the country.
Now, physicians and researchers themselves are coming forward with their struggles with long COVID symptoms. A number shared their experiences with MedPage Today -- as well as concerns about both stigma and the extra burden that an unexpectedly long, uncharted illness places on family members and co-workers.
Jeffrey Siegelman, MD, a 40-year-old emergency medicine physician at Emory University School of Medicine in Atlanta, experienced COVID-19 onset in early August. Like many long COVID patients, his initial symptoms were mild: headache, chills, low-grade fever, and loss of smell.
Eleven weeks later, he still is not back to work full time. His predominant symptoms include marked fatigue after mild exertion, intermittent headaches, palpitations, and light-headedness.
"Most days I'm well enough to do 3 to 4 hours of office work in the morning, with symptoms worsening into the evening. And my sense of smell has not returned yet," Siegelman told MedPage Today.
"I've found my colleagues to be very supportive and easy to talk to about this, with many of them frequently writing and calling to check in and offer to help," he noted.
"Still, the big challenge for me has been the knowledge that so many of them are having to work overtime to cover my shifts at a time when being an emergency physician carries with it more risk than ever."
The Long Haul
Walter Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke (NINDS), said it's "clear that, in contrast to influenza, COVID-19 infection can have longer-term effects on many who are affected, whether they have suffered critical illness or cleared the virus while sheltered at home. Whether chronic illness results from COVID-19 infection is currently not known, but this will become more clear over time."
"I am concerned that, as in many other conditions, treatment will be less effective once chronicity has been established," Koroshetz told MedPage Today. "So time is of the essence to help the thousands now coming out of their illness."
Little is known about what causes long COVID symptoms to persist, why full recovery is evasive, or how to help patients. A group of people who belong to the online Body Politic COVID-19 Support Group, including neuroscientist Athena Akrami, PhD, of University College London, conducted a survey from April 21 to May 2 to document what people who took more than 2 weeks to recover from COVID experienced. The group has since met with the CDC and the WHO to present its findings.
Of 640 people who completed the online survey, most were white females 30 to 49 years old (which may be because this demographic is more likely to join support groups, Akrami noted). Not all had been tested for SARS-CoV-2 due to testing shortages during the pandemic's early months, and many tested negative, which happened frequently due to the prevalence of false-negatives at the time, she said.
Common symptoms were mild shortness of breath, mild tightness of chest, moderate or mild fatigue, headache, mild body aches, chills or sweats, brain fog, and concentration challenges.
Most respondents had been dealing with these health problems for at least 5 to 7 weeks at the time of the survey. About 10% had recovered from post-COVID symptoms in an average of 27 days. Most considered themselves sedentary after they developed COVID, many had been physically active before their illness.
"I used to go to the gym three times a week," said Akrami, who's 38 years old. "Now, I have too much fatigue and numbness, and very, very strong and absolutely uncomfortable pins and needles sensations in my limbs."
"Pins and needles can be neuropathic, but it's not clear why I have brain fog and confusion and memory problems," she told MedPage Today.
"Are these first-order symptoms due to the virus, or are these consequences of fatigue and insomnia? Clinical studies will tell us more but for now, we are in darkness."
Threat to the Nervous System
COVID-19 is a "global threat to the nervous system, even among patients who aren't hospitalized," said Igor Koralnik, MD, who runs the Neuro COVID-19 Clinic at Northwestern University in Chicago. "It involves multiple organs besides the respiratory system, including the central and peripheral nervous system."
COVID-19's neurologic symptoms may stem from three possible sources, Koralnik noted: lack of oxygen to the brain due to respiratory problems during infection, direct viral attack on brain cells or nerves, or overreaction of the immune system.
So far, there is no convincing evidence for widespread infection of the brain with the virus, noted Avindra Nath, MD, of NINDS.
"Virus has been detected in cerebrospinal fluid and brain of very rare cases, however, there is evidence for widespread glial cell activation which may be related to metabolic dysfunction or to the massive immune activation in the periphery," he wrote in a recent Neurology editorial. "Depending on the predominant underlying pathophysiologic mechanism at play, targeted treatment might be possible."
Because it involves multiple organ systems, "understanding how COVID-19 leads to long-term effects will require a multi-specialty coordination of approaches," Koroshetz said. "The urgent needs of hundreds of thousands of COVID-19 survivors call for some trials of available recovery and rehabilitation treatments to start now to inform their medical care."
For Garner and other long COVID patients, some symptoms have waned with time. "I feel less under attack now," he said. "I still have these relapses and tiredness, but they don't come out of the blue within 30 minutes as they did before. They are more predictable and can be interrupted by rest or careful pacing."
Until there's more data to help target treatment, doctors need to pay attention to what long COVID patients may be experiencing, he added. "Patients need to be believed," he emphasized. "You need to listen to them to understand the disease. The patients know more than the doctors."
Last Updated October 22, 2020
Judy George covers neurology and neuroscience news for MedPage Today, writing about brain aging, Alzheimer’s, dementia, MS, rare diseases, epilepsy, autism, headache, stroke, Parkinson’s, ALS, concussion, CTE, sleep, pain, and more.
