An athletic, active blogger and 35-year-old mom had no health issues until she was tested positive for COVID-19 literally on April 1, 2020. Then her world changed. With continuous symptoms that degrade overall quality of life, Caitlin is part of a group of COVID-19 survivors known as “Long Haulers.” With no signs of relief, this group grows increasingly frustrated with the lack of understanding, despite intense research efforts to produce a vaccine and advanced monoclonal antibodies. What about the millions of people that have been infected with the disease that face the chance of becoming a Long Hauler? What do they do? Is there research investigating answers?
Recently, NBC Connecticut Investigates team, led by Dan Corcoran looked into this growing problem centering the look on Caitlin Houston. She still faces a range of debilitating symptoms despite the fact that the actual coronavirus infection is long gone. From bouts of dizziness to loss of taste and persistent shortness of breath and fatigue, the “Long Hauler” faces a range of problems that generate growing concern.
TrialSite looked into some basic information associated with the long hauler challenge. Also referred to a “Long Covid,” about 10 to 20 percent of individuals who have been diagnosed with COVID-19 report experiencing some form of longer term symptoms that range a month after the illness has past.
According to a recent Harvard report based on published studies and surveys, anywhere from 50 % to 80% of COVID-19 patients continue to experience troubling symptoms up to three months post the onset of the COVID-19 infection.
Gemelli Against COVID-19 Post-Acute Care Study Group
In one study, known as Gemelli Against COVID-19 Post-Acute Care Study Group, a team out of the Gemelli University Hospital in Rome, Italy share a case series where a large proportion of patients with COIVD-19 presented with symptoms after their virus cleared.
In fact, the Italian physicians found that of those patients who had recovered from their SARS-CoV-2 infection, 87.4% reported persistence of at least one symptom with a particular notable continuance of fatigue and dyspnea. Of course, this study, a case series, could be critiqued for various shortcomings but nonetheless the findings are troubling.
Ivy Network Investigators & CDC COVID-19 Response Team
In the United States the Influenza Vaccine Effectiveness in the Critically Ill (IVY) Network, a collaboration of U.S. health care systems, is conducting epidemiologic studies on COVID-19 in both in-patient and outpatient settings. The group of prominent health care centers (including academic medical centers) conducted a survey from April 15 to June 25, 2020 of COVID-19 patients. The team uncovered that 94% of the 274 respondents reported at least one or more symptoms at the time of testing while 35% of these symptomatic respondents reported not having returned to their normal state of health by the date of the interview. The team concluded that COVID-19 can result in prolonged illness even among persons with mild outpatient symptoms and this includes young adults.
Gaining prominence from an The Atlantic piece, thousands of people that once had COVID-19 still battle with persistent symptoms. Often women are afflicted and they are active in engaging with the medical community. They want answers and this will take the form of investment in more research to better understand this new illness.
Patients are event setting up user groups. For example, in a bid to build a collective voice to influence research and medical professionals, and to find horizontal communication channels, over 8,000 long haulers joined a Facebook group called “Long Haul COVID Fighters.”
In the United States, recently the NIH shared an anonymous editorial titled “Citizen Scientists Take on the Challenge of Long-Haul COVID-19” highlighting the frustration of patients and the need to create patient-led research groups such as the “Patient Led Research.”
NIHR Takes Action
The UK’s National Institute for Health Research Centre for Engagement and Dissemination recently published its first dynamic themed review following not only published scientific evidences but other real-world data points associated with this topic. Follow the link for more information from this British resource.
Call to Action: TrialSite has opened up an investigational channel for this persistent problem. TrialSite will monitor for any breakthroughs or new research centering on long haulers. Sign up for the daily newsletter for updates.