Gaps Between Expectations and Effects on Long COVID Contribute to Trust in Vaccines

Investigators find that the gap between scientific discourse—defined as potential benefits and potential harms of vaccines compared with long COVID—and public health discourse can contribute to barriers in maintaining trust after adverse and unexpected vaccine experiences. In a study published in Health Expectations, 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 many aspects of the body, with the risk of long COVID increasing with greater severity of infection and preexisting medical conditions. Long COVID can include a range of symptoms and conditions that can last weeks, months, or years. General symptoms can include tiredness or fatigue, symptoms that get worse 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 a study published in The New England Journal of Medicine found that among patients who were unvaccinated, after the first year after 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 received a COVID-19 vaccine. The initial 15 interviews were used to collect general narratives about the experiences of long COVID, including any perceived impact of vaccines—collected between May 2021 and May 2022—and 18 other interviews 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 either alleviating or worsening the condition. However, among the interviewees, the stories that they heard about the vaccine affecting long COVID 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 the improvements of symptoms were diverse, with some of the most significantly impacted being fatigued and brain fog. Some patients had limited symptom improvements and caused “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 did fear deadly outcomes of COVID-19, further vaccination was essential. Even if there were suspicions that vaccination could induce long COVID-19 symptoms, some patients still were committed to vaccination. However, patients who clearly attributed unwanted symptoms or exacerbation to vaccination did distrust the vaccine more. For patients who thought vaccination would act as a treatment for long COVID, they also lost trust in the vaccines. However, the change in trust did not directly correlate to 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.”

EAD MORE: COVID-19 Resource Center

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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. CDC. Long COVID. 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