The continuing puzzle of chronic COVID-19, which has troubled millions in recent years, may be inching towards clarity with the release of a fresh study on its potential defining characteristics. However, experts advise caution, emphasizing that this new set of potential symptoms should not serve as a self-diagnosis tool for patients.
Over 100 million U.S. residents have battled COVID-19, as indicated by recent data from the Centers for Disease Control and Prevention and the Census Bureau. About 15 percent of these individuals have reported prolonged symptoms associated with chronic COVID-19, significantly impacting their lives and confounding medical professionals.
In this study, published in JAMA, researchers from Massachusetts General Brigham assessed the self-reported data of almost 9,800 patients, who described experiencing 37 distinct long COVID symptoms half a year or more post-infection. Based on these symptoms, the team devised a scoring mechanism. If an individual’s cumulative symptom score reached a specified point, they were classified as having chronic COVID-19, or postacute sequelae of Sars-COV-2 infection.
As per the findings, the key identifiers of chronic COVID-19 include:
- exacerbation of symptoms following minor mental or physical exertion
- alteration in the sense of smell and taste
- persistent cough
- cognitive difficulties
- excessive thirst
- heart palpitations
- chest discomfort
- extreme tiredness
- decreased libido
- digestive issues
- abnormal movements like tremors The researchers subsequently classified patients into four groups based on the severity and type of reported symptoms, history of infection, and vaccination status. Those who contracted COVID-19 multiple times and didn’t complete the primary vaccination series demonstrated worse outcomes.
Dr. Andrea Foulkes, the lead author and principal investigator of the study, sees this as a vital first step in developing a unified strategy to identify individuals with chronic COVID-19.
The absence of evidence-based criteria throughout the pandemic has disadvantaged healthcare providers and patients. As the virus and its effects evolved, physicians and researchers found it challenging to comprehend and manage it. Simultaneously, chronic COVID-19 patients felt overlooked in the healthcare system, often advocating for themselves while enlightening clinicians about their condition.
The study has faced criticism since its publication. Some experts worry that the public might misinterpret the 12 symptoms as a definitive diagnostic criteria for chronic COVID-19. However, these findings are primarily useful as a research tool, according to Dr. Tanayott Thaweethai, a co-author of the study, emphasizing the need for further research.
The National Institutes of Health established the $1 billion RECOVER initiative in 2021 to better comprehend chronic COVID-19. This initiative established over 80 clinical sites across 33 states and enrolled over 13,000 adult patients. As part of this effort, patients underwent several tests and answered questions to help researchers understand the manifestation of chronic COVID-19 and who is at risk of severe infection and long-term effects.
Yet, these patients didn’t necessarily receive treatment. Many now view themselves as medical guinea pigs, expressing frustration and even betrayal that the promises made to them have yet to bring relief or restore normalcy.
Critics argue that the new study seems to rank symptoms such as loss of taste and smell over more impactful effects like fatigue and vertigo. Higher scoring symptoms are not necessarily more severe or more common, as stated by Thaweethai.
For chronic COVID-19 patients like Peter Paz, 44, of Wells, Maine, this study brings the possibility of focusing more on his health and less on educating his healthcare providers about his condition. Paz, who contracted COVID-19 in February 2020, has dealt with issues like an aching tongue and extreme fatigue with minimal insight, describing his experience as “an absolute struggle”. He believes that a defined list of symptoms could have significantly changed his interactions with healthcare providers.
Despite the U.S. lifting the public health emergency for the coronavirus pandemic on May 11, Paz feels that individuals with chronic COVID-19, like himself, are “being left behind”. Nevertheless, this preliminary list of symptoms gives him hope.