Post viral woes and the scientists who are finally listening:

Post-viral syndromes, particularly post-COVID, have created a divide between these underrecognized patients and the medical institution as a whole. Two innovative scientists are trying out a new type of research involving increased subject participation and creating a safe listening space between researchers and their participants. Can the open line of communication offer a different way to study this ongoing threat to society?

Since COVID,  thousands have suffered from sometimes debilitating post-viral side effects that may or may not last a lifetime.  Many go to multiple doctors and disciplines and feel they are not being heard, understood, or even taken seriously.  Much of their symptomatology has fallen under the category of 'contested illness,'  a term initially conceived by Phil Brown, author of the Contested Illnesses Research Group out of Brown University. It describes symptoms and illnesses of unknown or contested etiology among physicians and scientists (Brown et al., 2011). Clinicians claim it is difficult to treat these symptoms because they often manifest differently in different people. Despite accurate accounts of their ailments, these patients have been dismissed, ignored, and even gaslighted. This has caused significant discord between these lost patients, the researchers trying to understand them, and the practitioners attempting to treat them clinically. 

For nearly four decades, a patient-led movement called the Health Social Movement (HSM)  has addressed many issues related to patients and the healthcare system. Some have become what is referred to as 'lay scientists,' individuals who, utilizing the internet, educate themselves about their disease states and contribute to research. In this vein, the Patient-Led Research Collaborative (PLRC) was founded in April 2020 (Patient Led Research Collaborative – for Long COVID, n.d.Patient Led Research Collaborative – for Long COVID).   They surveyed hundreds of patients via the web and were the first patient-led group to make a sound, previously unknown diagnosis that the medical community had missed; the group is responsible for coining the term 'Long COVID.'  After an article in The Atlantic, the public and several well-funded governmental agencies took notice.  However, after several failed attempts at studying the illness, the patients felt even more frustrated.

Luckily, both scientists realized that listening to these internet-educated "scientists" offered resources by allowing them to participate in every step of the way. This new modality of research is necessary since conventional methods have failed to eradicate the lack of uncertainty surrounding post-viral complications. They believe that continuous personal accounts and daily data from participants' smartwatches will create a more consistent group of data to be studied than simply using information gathered at occasional visits to the office. Due to the variation in symptoms, the LISTEN initiative seeks to use this data to learn how and why the disease presents so differently in different people.

The study creates groups based on symptoms and then attempts to define whether or not a biological marker is standard within them. Unlike conventional scientific studies, this design is more friendly, democratic, and transparent, where patients are integral to every step. There are 'town halls' on an interactive website they have named Kindred Here, patients can discuss their symptoms,  scientists and patients can ask questions, and both can proffer information about possible treatment regimens and new ideas moving forward. Patients have complete access to their files and all results, ensuring they are included and informed throughout the research process. This inclusive process finally makes subjects feel heard, respected, and less alone.  It has given some hope for the first time in years. 

Of course, this design technique has many challenges. People can enroll online from anywhere in the US, and they do not require a doctor's referral. Also, since patients often report their symptoms after a suspected and unverified case of COVID-19, it has been exceedingly difficult to decide on scientific parameters and metrics that distinguish who may or may not be suffering from Long COVID-19. 

The researchers often interact with participants who feel like they have been 'thrown away' by the medical institution and who have sometimes come to the table antagonistic and impatient for a cure to stop their suffering. However, due to the communal nature of these interactions, the researchers and participants alike often come away from the experience feeling understood and respected (Bedard, 2024).  This comprehensive form of research has created a mutual trust between them, which aids in receiving honest reports from participants when discussing their symptoms as well as reports from the researchers regarding the study's progression back to the patients.  In addition, Iwasaki and Krumholz have added in all post-viral illnesses and 'long haulers' suffering from the ill effects of the vaccine itself.  This will be a lengthy, arduous undertaking; they realize this and are willing to do whatever it takes. 

Another challenge is participants often seek advice from Iwasaki and Krumholz regarding treatment.  The scientists must remind them that they are not medical doctors and, therefore, can not offer more than their opinion on the clinical treatment of the symptoms.  Until the final results are available, it is difficult to distinguish how to proceed regarding future regimens. However, despite the limitations of this study, hope is on the horizon.

Due to financial and health concerns, large segments of the population in traditional studies on post-viral illnesses have been underrepresented. In the studies conducted by Krumholz and Iwasaki, patients managed everything from home (blood draws, medications, etc., were delivered), making this unique because the research was accessible to everyone who registered (Sawano et al., 2024). Unlike other trials based in large research hospitals in major cities, this study was open to all patients who wished to participate. The increased availability provided by the LISTEN initiative will significantly affect those previously overlooked. This approach demonstrates ongoing efforts toward a possible cure while simultaneously providing these individuals the respect and attention they deserve. 

Due to the creative efforts of this research, progress has been made. The movement is growing and, with it, could come the end of suffering for many. Predicated on the efforts of groups before them, they hope to change the political landscape of governmental bureaucracy related to medicine and improve doctor-patient interaction while adhering to the regimens of scientific research. By incorporating patients as active participants, Iwasaki and Krumholz could bridge the gap and improve advances in this nascent field while allowing many to regain trust in medicine and find a treatment to alleviate their misery.

References

Bedard, R. (2024, January 23). What it would mean for scientists to listen to patients. New Yorker. https://www.newyorker.com/news/annals-of-inquiry/what-would-it-mean-for-scientists-to-listen-to-patients

Brown, P., Morello-Frosch, R., & Zavestoski, S. (2011). Contested illnesses: Citizens, science, and health social movements. Univ of California Press.

Fitzgerald, M. L., Cohen, A. K., Jaudon, T. W., Vogel, J. M., Koppes, A. N., Santos, L., Robles, R., Lin, J., Davids, J. D., McWilliams, C., Redfield, S., Banks, K. P., Richardson, M., Tindle Akintonwa, T. T., Pollack, B., Spier, E., Weiss, A., Assaf, G., Davis, H., & McCorkell, L. (2024). A call from patient-researchers to advance research on long COVID. Cell, 187(20), 5490–5496. https://doi.org/10.1016/j.cell.2024.09.011

Patient led research collaborative – for long COVID. (n.d.). Retrieved December 4, 2024, from https://patientresearchcovid19.com/

Sawano, M., Wu, Y., Shah, R. M., Zhou, T., Arun, A. S., Khosla, P., Kaleem, S., Vashist, A., Bhattacharjee, B., Ding, Q., Lu, Y., Caraballo, C., Warner, F., Huang, C., Herrin, J., Putrino, D., Michelsen, T., Fisher, L., Adinig, C., … Krumholz, H. M. (2024). Long COVID characteristics and experience: A descriptive study from the Yale LISTEN research cohort. The American Journal of Medicine. https://doi.org/10.1016/j.amjmed.2024.04.015