Gaps Between Expectations and Effects of Long COVID Affect Trust in Vaccines

Investigators have found that the gap between scientific discourse—defined as the potential benefits and harms of vaccines compared with long COVID—and public health discourse can impact trust after adverse and unexpected vaccine experiences. In data published in Health Expectations, the study investigators stated that further research is needed to better understand who is likely to benefit from vaccination and who might be at risk for worsening long COVID symptoms.¹

“We have examined how people affected by long COVID reconciled trust in future vaccination with unexpected responses to COVID vaccines,” the study authors said. “Participants described a range of potential roles for vaccination: as protective from further infection and as attenuating, exacerbating, or inducing long COVID symptoms.”

Postacute sequelae of severe acute respiratory syndrome coronavirus 2 infection, also known as long COVID, can affect the body in many ways, with the risk of long COVID increasing with greater severity of infection and preexisting medical conditions. Long COVID encompasses a range of symptoms and conditions that can persist for weeks, months, or even years. General symptoms can include tiredness or fatigue, symptoms that worsen after physical or mental efforts, fever, difficulty breathing or shortness of breath, coughing, chest pain, headaches, sleep issues, or change in smell or taste. Although the risk of long COVID decreases after COVID-19 vaccination, investigators of study data published in The New England Journal of Medicine found that among unvaccinated patients, after the first year following infection, there were 10.42 events per 100 persons who acquired long COVID-19 compared with 5.34 events per 100 persons who were vaccinated.^2,3

Investigators of the current study aimed to determine how patients accounted for gaining or losing trust in vaccines due to their experienced improvement, deterioration, or development of long COVID symptoms. They conducted 33 interviews with patients who had long COVID symptoms and had received a COVID-19 vaccine. The initial 15 interviews, between May 2021 and May 2022, were used to collect general narratives about long COVID experiences and any perceived impact of vaccines; the remaining 18 interviews were used to explore more explicit vaccine narratives, collected between November 2022 and June 2023.¹

The interviews were conducted via online video platforms or over the phone for patients across the United Kingdom. Interviews lasted approximately 60 to 90 minutes. In the first part of the study, patients who had long COVID at the time of their first vaccine discussed hearing about the vaccine alleviating or worsening the condition. However, the stories they had heard did not change their intention to get the vaccine. “All participants were motivated to take a vaccine because of its primary role in offering individual- and population-level protection from severe COVID infection,” the study authors said.¹

Investigators found that symptom improvements were diverse, with fatigue and brain fog being among the most significantly impacted. Some patients experienced limited symptom improvements, which led to “bitter disappointment,” according to the authors. For some, symptoms worsened or new symptoms were induced.¹

In the second part of the study, investigators focused on trust in future vaccination. For patients who feared deadly outcomes of COVID-19, further vaccination was essential. Even if they suspected that vaccination could induce long COVID symptoms, some patients remained committed to vaccination. However, patients who clearly attributed unwanted symptoms or exacerbation to vaccination were more distrustful of the vaccine. Patients who thought vaccination would act as a treatment for long COVID also lost trust in the vaccines. However, the change in trust did not directly correlate with non–COVID-19 vaccines.¹

“Our findings have broader policy and practice implications. Building on previous research, our findings reinforce the critical importance of clinicians taking concerns about unexpected vaccine responses seriously,” the study authors said. “Distrust builds when patients feel unheard or dismissed. Most participants in this study who experienced an adverse reaction wanted to continue with COVID vaccination but also wanted to understand the causality of their reactions so they could make an informed decision about trade-offs of protection versus worsening of long COVID.”

READ MORE: COVID-19 Resource Center

Are you ready to elevate your pharmacy practice? Sign up today for our free Drug Topics newsletter and get the latest drug information, industry trends, and patient care tips straight to your inbox.

REFERENCES

1. Dowrick A, MacLean A, Ziebland S, Greenhalgh T. Trust in transition: exploring changing trust in vaccination in the context of long Covid in the United Kingdom. Health Expect. 2025;28(5):e70459. doi:10.1111/hex.70459

2. Long COVID signs and symptoms. CDC. July 24, 2025. Accessed October 22, 2025. https://www.cdc.gov/long-covid/signs-symptoms/index.html

3. Xie Y, Choi T, Al-Aly Z. Postacute sequelae of SARS-CoV-2 infection in the pre-delta, delta, and omicron eras. N Engl J Med. 2024;391(6):515-525. doi:10.1056/NEJMoa2403211