By Mahlon Meyer
NORTHWEST ASIAN WEEKLY
As multiple studies isolate the many ways long COVID-19 affects the human body, the list of symptoms keeps growing.
They include—but are not limited to—mental health conditions, such as anxiety and depression, mood changes, discomfort after exercise, fatigue, brain fog, dizziness, stomach problems, heart palpitations, sleep problems, changes in sexual desire or capacity, changes in smell or taste, thirst, chronic cough or shortness of breath, fever, chest pain, and abnormal movements, according to preliminary results of the RECOVER initiative.
But what is worse, symptoms can change over time, making it even harder to diagnose, according to another study, INSPIRE.
Moreover, researchers are now beginning to consider the syndrome as involving not one, but multiple illnesses.
“There is evidence to suggest long COVID may be due to multiple conditions. Several underlying mechanisms of disease have been proposed and are under investigation,” Tia Babu, assistant professor, Department of Medicine, Division of Allergy and Infectious Diseases, University of Washington (UW) Medical School, told Northwest Asian Weekly. Babu is also an investigator in a third study, CASCADIA.
“Long COVID includes many symptoms, affects many organs, and varies from mild to profound disability,” she said.
Harder to define than ever
This makes it increasingly difficult to come up with a one-size-fits-all description of the malady.
“The definition of long COVID is still dynamic as we continue to learn more, but it is clear that there is a wide variety of subtypes of symptoms and conditions that fall under the large umbrella of ‘long COVID,’” Linda Geng, clinical associate professor in primary care and population health at Stanford Medicine, told Northwest Asian Weekly.
Complicating the diagnosis, the many conditions that can comprise long COVID mean it can sometimes show up as other syndromes entirely.
“It can be considered a ‘syndrome of syndromes’ because patients with long COVID may have features that fit another syndrome such as chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS) or postural orthostatic tachycardia syndrome (POTS), etc. This is important to understand further as we investigate the mechanisms and find treatments for patients with widely different symptoms and manifestations,” said Geng.
Of people afflicted with COVID-19, a full 11% will develop long COVID, the Centers for Disease Control and Prevention (CDC) estimates.
More strikingly, even those who have never tested positive for COVID-19 can develop the syndrome. For example, some people might not have had any symptoms or mistaken COVID-19 symptoms with another respiratory illness and, as a result, never tested for COVID-19.
“For different reasons, some people don’t get an official COVID diagnosis from a doctor. But even people who never knew they had COVID can have effects weeks or months later,” according to the RECOVER initiative.
To find a testing location, visit https://doh.wa.gov/emergencies/covid-19/testing-covid-19/testing-locations
Treatments still case by case
Doctors who treat patients with long COVID say more research needs to be done about how to first effectively manage the syndrome, and then the cures.
“Long COVID is highly heterogeneous, and management of long COVID is not a one-size-fits all,” said Geng, who is co-director of Stanford’s long COVID clinic. “Although there are some strategies and treatments that have anecdotally helped some patients with long COVID, what we really need are rigorous clinical trials and research to better establish the likely multitude of treatments that are needed to treat a multitude of symptoms and manifestations.”
So far, she added, most treatments are off-the-cuff.
“We still do not have any established, effective therapies that are based on randomized controlled trials, and this remains a key priority as we research the mechanisms of this complex condition in parallel,” she said.
This is because COVID-19 is a relatively new disease, but with time and extensive research, we will have better understanding and treatments, including for Long COVID. One thing researchers do know is that being fully vaccinated reduce the risks of developing Long COVID symptoms.
Directions for new treatments
Results of the new studies could potentially lead to better treatments.
Kari Stephens, Helen D. Cohen Endowed Professor and research section head in the Department of Family Medicine and an adjunct professor in the Department of Biomedical Informatics and Medical Education at the UW School of Medicine, said that the INSPIRE study would help direct policy makers to allot funding for long COVID programs.
“This study will help us understand how we need to treat long COVID over time, in very specific ways for each patient depending on how their symptoms present,” she said. “We don’t want to forget about long COVID as we all go back to ‘normal,’” she said. “New long COVID cases are occurring every day.”
A bright spot – Vaccines help reduce the risks of Long COVID
One bright spot has already emerged. Research undertaken by the UK’s Office for National Statistics suggests that vaccination—even after a person has been infected with COVID-19—can lower the chances of it developing into long COVID.
“Vaccination after infection with SARS-CoV-2, the virus responsible for COVID-19, is associated with a decrease in the likelihood of long COVID symptoms,” according to a statement by researchers of a large study of UK adults published by the British Medical Journal last year.
Researchers studied 28,356 adults aged 18-69 years old who received at least one COVID-19 vaccine after testing positive. They then tracked long COVID symptoms over a seven-month period.
A first vaccine dose was associated with a 13% decrease in the odds of acquiring long COVID—over the following 12 weeks. A second dose was associated with a further 9% lowering of the odds of getting the syndrome—over the following nine weeks.
Researchers stressed the evidence was “observational” and could not define strict causality.
But their observations “may contribute to a reduction in the population health burden of long COVID,” they wrote.
At the same time, however, infection with long COVID is known to lower an individual’s immune response. So vaccination, post-infection, also reduces the risk of reinfection—a not uncommon occurrence.
Ultimately, not getting COVID-19 in the first place is the best bet to avoiding long COVID.
“The best prevention for post-COVID-19 complications is to avoid getting COVID-19 infection or re-infection,” said Babu. “We recommend staying up to date on COVID-19 vaccines.”
A person is considered fully vaccinated if they have completed a COVID-19 vaccine primary series and received the most recent booster dose as recommended.
Learn more about staying up-to-date on the CDC website.
Studies promise better understanding
The RECOVER initiative was created by the National Institutes of Health (NIH) in 2021 with an award of $470 million to be spread across over 100 researchers at 30 institutions. RECOVER stands for Researching COVID to Enhance Recovery. The objectives of the study are to understand the causes of long COVID and how they affect recovery from a COVID infection; to define how long COVID occurs and who is at the greatest risk of developing it; to study the types and causes of changes to organ function and whether long COVID increases the risk of other diseases; and identify treatments or preventative measures.
“We know some people have had their lives completely upended by the major long-term effects of COVID-19,” said NIH Director Francis S. Collins in announcing the study. “These studies will aim to determine the cause and find much needed answers to prevent this often-debilitating condition and help those who suffer move toward recovery.”
INSPIRE, or Innovative Support for Patients with SARS-CoV-2 Infections, is a federally funded collaboration of eight major academic medical centers, including UW Medicine, seeking to better understand the long-term effects of COVID.
CASCADIA is a four-year study undertaken by Kaiser Permanente Northwest Center for Health Research, the UW, and Seattle Children’s Hospital, in partnership with the CDC.
All the studies have already yielded significant results, some narrowly focused. For instance, the RECOVER study has suggested that adults with sleep apnea are at a higher risk of developing long COVID.
“Moving forward, we anticipate more publications to emerge from these studies, improving our understanding of COVID-19 and post-COVID conditions,” said Babu.
Mahlon can be reached at firstname.lastname@example.org.
Made possible in part by the Washington State Department of Health through a grant from the Centers for Disease Control and Prevention. This information does not necessarily reflect the official policies of the Washington State Department of Health or the Department of Health and Human Services.