Patient-powered Surveys Help Generate New Data About Long COVID

Nearly three years into the pandemic, the long-term impacts of COVID-19 continue to unfold in real-time. Now, communities and medical experts are grappling with an alarming reality: COVID-19 can trigger serious and long-lasting health complications in a significant number of people. The increasingly prevalent illness that follows COVID-19 goes by several names, including long COVID, long-haul COVID, chronic COVID, post-acute COVID-19, and post-acute sequelae of COVID-19 (PASC) [1]. There is much that remains unknown about long COVID, but many experts propose that studies called Long COVID Surveys are vital to understanding and addressing this emerging health crisis. 

Although outcomes for COVID-19 have varied widely, the initial illness, or acute phase, is typically around ten days [2]. However, some patients – even those that initially developed mild symptoms – do not fully recover, or begin to suffer new symptoms for weeks or months following an acute COVID-19 infection. People who experience this ongoing illness are often referred to as long-haulers. The true size of this burden is difficult to estimate at this time, but preliminary studies suggest that long COVID affects around 30% of those who contract COVID-19 [3,4,5].

Long Covid, Autoimmunity, and viral triggers

It’s important to note that long COVID currently lacks a distinct and universal definition.

According to some experts, long COVID broadly refers to an array of signs and symptoms that persist for at least 12 weeks following an acute COVID-19 infection [6]. Long COVID symptoms can be fluctuating, relapsing, or ongoing. The most common long-haul symptoms include exhaustion, shortness of breath, chest tightness, muscle aches, headache, poor concentration, memory problems, changes in taste and smell, and more [7,8]. Many long-haulers experience a systemic illness that causes problems throughout the entire body [9,10]. Long-term pulmonary and cardiovascular complications have also been reported, most frequently in individuals who were hospitalized due to COVID-19 [11].

It is unclear how or why long COVID occurs. However, some researchers are turning to features of autoimmune disease for clues. A handful of ongoing studies are investigating whether autoantibodies, proteins that attack healthy human cells in autoimmune disease patients, could be an underlying cause of long COVID. Some researchers posit that COVID-19 could cause proteins called fibrin to form micro clots in the blood of some patients. As these micro clots circulate, they may entrap other proteins, triggering the production of destructive autoantibodies [12]. 

Furthermore, limited research is casting a light on the similarities between long COVID and myalgic encephalomyelitis (ME/CFS), a chronic neuroimmune disease characterized by debilitating fatigue that inhibits daily activities [13]. The exact causes of ME/CFS remain unknown. However, viruses such as Epstein-Barr and enterovirus have long been implicated as triggers. In studies, long COVID and ME/CFS have been shown to share key clinical features, including fatigue, decreased ability to complete daily activities, and worsening of symptoms after physical or mental effort (commonly known as post-exertional malaise) [14]. Although the exact association between these diseases is still unknown, many experts and advocates believe that data collected in long COVID studies could be enormously valuable for understanding, diagnosing, and managing other immune system disorders- including autoimmune diseases and ME/CFS. 

The Race to Address Long Covid

Despite advancements in the treatment and prevention of acute COVID-19, research into long COVID continues to lag behind. Many experts have warned that the pandemic could cause a significant uptick in disability, noting that long COVID symptoms can cause serious impairments which prevent people from working and performing other day-to-day activities. Incoming data is beginning to shed light on the disabling effects of long COVID. In a 2020 study, German researchers found that 11% of non-hospitalized COVID-19 patients still had symptoms that prevented them from fully returning to work and daily activities seven months after contracting the disease [8]. Additionally, the Patient-Led Research Collaborative for Long Covid reported that 67.5% of the long COVID patients they surveyed required reduced work hours or were unable to work at all due to their illness. 

The burden of long COVID is not exclusive to disability. With no approved treatments yet available, many long-haulers turn to self-management, which can include a variety of pricey and unproven approaches, supplements, or medications. For some, the economic distress of self-management could be too much to bear. A recent report from the Lancet proposed that expenses related to long COVID self-management could generate greater inequalities in affordability and access to care [15]. As patients struggle to find adequate resources and treatment, there is an intensifying need for research that emphasizes the economic, social, and medical impacts of long COVID. 

Long Covid Surveys

The swarm of uncertainty around long COVID has left no shortage of questions for researchers. Yet, even as data begins to roll in, there remains an urgent need for standardized approaches to studying the disease [16]. As such, many researchers and advocacy groups are turning to questionnaires designed to gather data through patient self-reporting- known as long COVID surveys- to help fill in these gaps. Experts are hopeful that long COVID surveys can help further our understanding of the disease. Some key applications of long COVID surveys include: 

• Developing, shaping, and optimizing treatments [17].
• Identifying causes and risk factors [18].
• Prevention of long COVID. 
• Understanding physical, mental, and economic impacts on long-haulers [19].
• Understanding the impacts of the disease across different racial and ethnic groups [18].
• Assessing the effects of COVID-19 and long COVID on patients with a variety of pre-existing conditions. 

Finding and participating in a Long Covid Survey

Long COVID surveys are not just for those currently experiencing symptoms. Like other types of research, long COVID surveys utilize healthy control groups. Even if you never developed ongoing symptoms or have since recovered from long COVID, you are encouraged to participate. Long COVID surveys are also designed to validate patients who became sick but were unable to confirm their COVID-19 diagnosis due to lack of availability or access to testing. Therefore, if you suspect that you had COVID-19, your experiences are equally valuable in a long Covid survey. 

Some long COVID surveys consist of a one-off questionnaire, whereas others are more comprehensive. For longer studies, you may be prompted to answer survey questions over a period of time or work with your doctor to provide biological samples for research. The following studies are actively gathering information on COVID-19 and long COVID in the United States: 

• You + ME Covid-19 Study 
• RECOVER 
• Johns Hopkins Long Covid Study 
• Allergy and Asthma Network Covid-19 Study 
• MotherToBaby Covid-19 Study 
• Covid INSPIRE Study 
• The Patient-led Research Collaborative
• Serrimune Covid-19 Study
• The HERO registry (must be a healthcare worker to participate in this survey)

Additionally, online communities like Body Politic and The Long Hauler Advocacy Project are dedicated to building awareness and solutions around long COVID. Through patient-led support groups and networks, thousands of long-haulers find connection and support. Resources and insights regularly circulate through these spaces, so they’re a great place to discover new long COVID studies as they arise. 

Many organizations and medical institutions have created their own registries to capture long COVID data. While most of these registries are only for use by healthcare professionals, some offer insights into their ongoing work. The American Heart Association, The Covid-19 and Cancer Consortium, American Academy of Pediatrics, and Type 1 Diabetes Exchange are a few examples of the institutions hosting ongoing COVID-19-related studies. 

Patient experiences are one of the most important factors shaping our understanding of long COVID. As research rolls on, there is hope that long COVID surveys will shed light on the causes and impacts of the disease while amplifying the most valuable voices of all: the voices of those impacted by long COVID.