‘Patients Are Frustrated': Long COVID Poses Bumpy Road to Recovery

Hospitalization and death rates may be low amid the current stage of the coronavirus pandemic, but for patients undergoing the long-lasting impacts of the virus, there's still little light at the end of the tunnel.

Long COVID casts a wide array of symptoms that make it an enigma for healthcare experts. Fatigue, shortness of breath, cough, joint pain, and chest pain are just a few persistent conditions.

Dr. Thomas Gut is the director of the Post-COVID Recovery Center at Staten Island University Hospital and has been leading the program since the fall of 2020. He notes that typically 30%-35% of patients report lingering symptoms after infection, such as loss of sense of smell and neurocognitive issues.

"About a third of the patients that come in here are telling us that they can't sleep, can't remember words, difficulty with expressing themselves," Dr. Gut told NBC New York.

According to the American Academy of Physical Medicine and Rehabilitation (AAPM&R), just over one in four COVID cases in New York, New Jersey, and Connecticut are estimated to become long COVID or post-acute sequelae of SARS-CoV-2 infection.

Dr. Gut said patients join the post-COVID program after being punted around by various physicians labeling these patients as normal -- even though they don't feel fine.

"What we're finding is a lot of patients are experiencing brain fog, so they're talking about not being able to think as clearly, word-finding problems, and memory problems," said Dr. Rosemarie Basile, director of psychology services at Staten Island University Hospital.

A recent study by the University of Cambridge revealed about 70% of long COVID patients suffered from memory and concentration problems several months post-acute infection.

“Long COVID has received very little attention politically or medically. It urgently needs to be taken more seriously, and cognitive issues are an important part of this. When politicians talk about ‘living with COVID’ – that is, unmitigated infection, this is something they ignore. The impact on the working population could be huge,” said Dr. Lucy Cheke, researcher and senior author of the University of Cambridge paper.

Dr. Basile is working on a couple of grants, one from the National Academy of Neuropsychology focusing on how COVID-19 affects people's thinking skills, memory, and attention spans. She's finding high rates of these complaints in at least 20%-30% of patients noting these difficulties.

Through the Robin Hood Foundation, there's a second grant worth $46,000 offering mental health and cognitive testing services free of charge identifying patients who may not be able to afford medications.

Clinical Trials for Treatment

There are over 60 hospitals and health systems nationwide that have created COVID-19 recovery programs as of last month, based on Becker's Hospital Review.

One study led by the Feinstein Institutes for Medical Research at Northwell Health and Cold Spring Harbor Laboratory used a popular heartburn drug to reduce infection symptoms.

The study revealed that famotidine, otherwise known as Pepcid, reduced inflammation in the body and could be resistant to COVID variants as it does not act as an antiviral.

"There was a significant shortening of the disease symptoms from 11 days in the placebo group to eight days in the famotidine group and a statistically significant decrease in the severity of the cytokine response inflammatory marker in the blood," Dr. Kevin J. Tracey, president and CEO of the Feinstein Institutes, told NBC New York.

Dr. Tracey notes that these findings imply some next steps regarding long COVID, which he states may possibly be studied in the phase three trial.

"If you're shortening the disease from 11 days to three days because the symptoms are statistically significantly less in the famotidine patients, three days shorter from day 11 to day eight, does that mean that you reduce the cohort of people at risk for long COVID?" noted Dr. Tracey.

Jennifer Scruggs and her husband, of Bethpage, New York, both participated in this clinical trial. She hopes this encourages others to follow suit in supporting scientific research.

"The more that we can find out, the better off we all are as a society," shared Scruggs, who works at Northwell.

This story is part of a series, "Living with Coronavirus For the Long Haul," following long COVID experts and patients during the two-year pandemic anniversary. Watch episode one here.