A groundbreaking exploration into long Covid symptoms falls short of delivering the anticipated relief to millions of Americans and medical professionals seeking answers. The study, an initial contribution from the National Institutes of Health’s RECOVER program, fails to establish a standardized definition for the condition, emphasizing the need for a “common language” among researchers striving to develop effective treatments. Dr. Leora Horwitz, a study author and esteemed professor at New York University Grossman School of Medicine, as well as the director of the Center for Healthcare Innovation and Delivery Science at NYU Langone Health, predicts an imminent deluge of scientific investigations. “I think that the amount of science that’s going to come after this is going to be an avalanche,” Dr. Horwitz affirms.
Published in the Journal of the American Medical Association, the recent study scrutinizes data from the RECOVER trial, encompassing 9,764 adults, the majority of whom had previously received a Covid diagnosis. While the multifarious symptoms associated with long Covid have been extensively reported anecdotally, this study focuses on delineating 12 of the most prevalent manifestations. These encompass ongoing fatigue, brain fog, dizziness, thirst, cough, chest pain, heart palpitations, abnormal movements, upset stomach, lack of sexual desire, loss of smell or taste, and post-exertional malaise—the feeling of sickness or excessive exhaustion following physical activity.
It is crucial to note that this paper does not seek to confine the definition of long Covid solely to these 12 symptoms. Instead, it aims to channel future research toward understanding the diverse impact of long Covid on the body. Additionally, the study introduces a personalized scoring system that tailors the assessment to each patient based on symptom severity. Andrea Foulkes, principal investigator of the RECOVER Data Resource Core and director of biostatistics at Massachusetts General Hospital, expresses the significance of this tool, stating, “This is a tool that can be used to identify people with long Covid for the purpose of doing more research. The significance of that is that we can then begin to unravel the mechanisms for each of those different manifestations. And then of course, ultimately, the goal is to identify treatments.”
However, despite the eager anticipation from individuals still grappling with long Covid symptoms and their attending physicians, this paper has drawn some criticism. Jim Jackson, director of Behavioral Health at Vanderbilt University Medical Center and author of “Clearing the Fog: From Surviving to Thriving With Long Covid—A Practical Guide,” anticipates disappointment among readers seeking therapeutic solutions. He remarks, “I think people will be underwhelmed by a ‘landmark’ paper that is describing the presence of symptoms that people have long known are a problem. This isn’t a paper that offers any solutions, that offers any therapeutics. And that’s desperately what people want: hope in the form of treatments.”
Jackson stresses the need for greater specificity in symptom description, specifically highlighting concerns about the ambiguous term “brain fog.” To illustrate his point, he proposes the alternative of classifying it as a brain injury, which would provide a clearer treatment path through established cognitive rehabilitation methods. In response, Dr. Horwitz provides some clarification, explaining that brain fog, in the context of long Covid, encompasses difficulties comprehending written material after reading it multiple times, struggling to remember non-routine appointments, and encountering challenges with following complex instructions.
Another term that faces criticism for its vagueness is “abnormal movements.” During interviews, RECOVER researchers were unable to provide a more precise definition for this symptom, stating that it necessitates further study. Dr. Hugh Cassiere, director for critical care services at South Shore University Hospital, emphasizes the frustration caused by such imprecise terminology when attempting to assess patients for long Covid.