Janko Ž. Nikolich, MD, PhD
RECOVER Principal Investigator
Director, Aegis Consortium
Sally Hodder, MD
RECOVER Principal Investigator
Associate Vice President for Clinical & Translational Science/Director, West Virginia Clinical and Translational Science Institute
Clifford Rosen, MD
RECOVER Principal Investigator
Director of Clinical and Translational Research and a Senior Scientist at Maine Medical Center Research Institute
The impact of the National Institutes of Health's Researching COVID to Enhance Recovery (RECOVER) Initiative, the primary government-supported research initiative to address Long COVID, is just being realized. The first critical juncture is complete: total enrollment of 25,000 individuals, with the highest population diversity of any study the government has funded.
In How to End the Futile Blame Game Over Failed Long COVID Research, Steven Phillips and Michelle A. Williams propose that funding for Long COVID should encompass care, treatments, outreach, and other services to the Long COVID patient population. The recruitment phase of RECOVER has been about more than enrolling participants; it has been an instrumental driver of collaboration across institutions and with patient advocacy groups. We wholeheartedly agree. RECOVER principal investigators (PIs) have been advocating for additional funding for patient care and patient-centered action over and above the RECOVER study, exactly as proposed by Phillips and Williams.
However, they also argue that RECOVER, researching the biomedical causes and mechanisms of Long COVID and other similar biomedical research studies, has failed and should end because they have yet to produce breakthroughs. Turning away from biomedical investigations of Long COVID at this point would represent a grave mistake with unimaginable consequences. We have never studied a post-viral disease starting from a precipitating event. Studies of other post-infection syndromes lacked a clear, definitive incident infection in the human population.
Williams and Phillips ignore the differences between the mass disabling event caused by a novel pandemic virus and research of a similarly complex condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). While Long COVID may have similar features to ME/CFS in some patients, equating research that did not yield cures or breakthroughs in the past 20-plus years to the ongoing RECOVER study is short-sighted.
Categorizing Long COVID research as “reaching a mature stage” is wrong. Consider the findings of a large cohort study, the Framingham Heart Study, initiated in 1948 to understand heart disease, the number one killer of Americans and individuals worldwide. It took a decade for investigators to define hypertension as its first actionable contributor to heart disease. If the Framingham Study had been halted in two years, one can only imagine how many more people would have died from our lack of understanding of cardiovascular disease.
Long COVID offers the opportunity to learn about the underlying mechanisms behind various chronic diseases. The data derived from Long COVID studies, including the RECOVER observational study and the intervention trial research, presents an unprecedented opportunity to deepen the understanding of post-viral syndromes and likely chronic diseases. Not only will understanding mechanisms that cause Long COVID symptoms prove invaluable to Long COVID and chronic disease patients, but understanding biomarkers of various Long COVID symptom clusters and potentially unique aspects in populations across the country who have been disproportionately affected by Long COVID will also prove invaluable. Failing to continue these studies now would fail millions of Long COVID patients in the worst possible manner.
Now is the time not to give up. Understanding risks and mechanisms will ultimately provide for effective care and prevention – just as has resulted from the many years of the Framingham Study. It is a false dichotomy to pit care against research – rather, both must synergistically occur to effectively treat current and prevent future suffering.