Post-COVID-19 Syndrome as Described by Patients: A Qualitative Study, 2025, Fonda et al.

[SNT Gatchaman]

Post-COVID-19 Syndrome as Described by Patients: A Qualitative Study
Fonda, Federico; Chiappinotto, Stefania; Visintini, Erica; D’Elia, Denise; Ngwache, Terence; Peghin, Maddalena; Tascini, Carlo; Balestrieri, Matteo; Colizzi, Marco; Palese, Alvisa

BACKGROUND/OBJECTIVES
Growing interest in post-viral conditions following COVID-19 infection has led researchers and clinicians to develop several definitions of post-COVID-19 syndrome. This study aimed to understand the meaning given to post-COVID-19 syndrome by individuals who survived the first wave of the pandemic two years after its onset.

METHODS
A descriptive qualitative study was performed according to the Standards for Reporting Qualitative Research guidelines. An inductive and content analysis were adopted on narratives collected via the interview of patients who had been infected with SARS-CoV-2 during the first pandemic wave in the Friuli Venezia Giulia Region (Italy).

RESULTS
This study included 230 patients, of whom 158 experienced post-COVID-19 syndrome, and 46 (29.1%) reported suffering from this condition 24 months after the infection. On average, patients experienced three symptoms, with most of them experiencing at least one. Seventy-five patients reported being familiar with the definition of the post-COVID-19 syndrome, mainly through media and the internet (28.9% and 28.2%, respectively). The post-COVID-19 syndrome was described as characterized by two themes: (a) the experience of interrelated physical and psychological symptoms and (b) the experience of fighting like warriors for a long time.

CONCLUSIONS
The post-COVID-19 syndrome is highly prevalent but poorly understood. Patients rely on low-quality information rather than that offered by clinicians. The post-COVID-19 syndrome appears to be a complex syndrome encompassing physical and mental symptoms, as well as those disabling the person with an unclear trajectory. There is a need to focus on the long-term consequences of COVID-19, incorporating insights from individuals’ lived experiences.

Link | PDF (Healthcare) [Open Access]

 

[SNT Gatchaman]

Recognizing the importance of assessing patients beyond the acute phase, our research group conducted follow-up evaluations over the months and years following the initial COVID-19 outbreak. We believed that some patients might not achieve full recovery (restitutio ad integrum) and could continue to experience long-term malaise. Follow-up visits helped map the phenomenon, identifying symptom progression patterns. Specifically, post-COVID-19 symptoms were identified at each follow-up assessment, conducted at 6, 12, and 24 months after onset. One of the most relevant findings was that while some physical symptoms persist, albeit to a lesser extent than during the acute phase, new symptoms also emerge, particularly in the mental health domain, including fatigue and cognitive failures.

Seventy-five patients reported knowing what the post-COVID-19 syndrome is (47.5%), whilst others did not know (29.1%) or reported being uncertain (23.4%). Out of those who reported some knowledge on the post-COVID-19 syndrome, 45 reported obtaining information from the media (e.g., television, newspapers) (28.9%), others gathered information from the internet (28.2%), their general practitioner (19.2%), and a few from a specialized physician (7.7%).

Results indicate that the post-COVID-19 syndrome is highly prevalent at 24 months but poorly understood and that patients often rely on low-quality information rather than clinicians. Moreover, the patients’ report is of a complex syndrome encompassing physical, mental, and disability symptoms of an unclear trajectory, with the subjective perception of a set of interrelated physical and psychological symptoms, an experience of struggle between pain and fatigue, an emotional storm, and brain fog perception.

LOL

 

[Utsikt]

Results indicate that the post-COVID-19 syndrome is highly prevalent at 24 months but poorly understood and that patients often rely on low-quality information rather than clinicians.

The omission of a qualifier for the word ‘clinicians’ tells you all you have to know about their biases.

 

[rvallee]

Patients rely on low-quality information rather than that offered by clinicians

Well, that's a bit high and mighty considering the medical profession still refuses to take this seriously, and that the only quality information that exists out there came for us. Let's let the people who don't live in glass houses throw stones, shall we?

There is a need to focus on the long-term consequences of COVID-19, incorporating insights from individuals’ lived experiences.

Oh, you mean what millions have been begging for decades, and warned in a public way from the beginning of COVID? Which medicine entirely ignored? Yeah, let's maybe not talk about quality of information here because wow does it not make medicine look good.

If it hadn't been for social media, if this pandemic had happened 20 or 30 years ago, literally none of this would have come out. Medicine would have been completely oblivious to it, it wouldn't even have been described or researched. In fact it would have been widely used as a textbook example of mass hysteria. Which has happened anyway.

and (b) the experience of fighting like warriors for a long time

Ugh. No.

 

[rvallee]

This study was conducted in accordance with the Declaration of Helsinki and approved by the Ethics Committee of the Friuli Venezia Giulia Region (Italy), approval numbers CEUR-2020-OS-219 and CEUR-2020-OS-205 (8 April 2022).

Recognizing the importance of assessing patients beyond the acute phase, our research group conducted follow-up evaluations over the months and years following the initial COVID-19 outbreak. We believed that some patients might not achieve full recovery (restitutio ad integrum) and could continue to experience long-term malaise.

Oh, wow. You recognized what had been going on for two years at this point? And believed the thing which millions had already reported at the time might possibly happen? Good for you. You are definitely super duper good at anticipating things in this job, and other stuff.

Sorry I feel this needs a little higher snark factor than usual because of the completely uncalled for "low quality" comment, given that the medical profession has not been able to produce a single useful bit of information that the patient community hadn't already come up with and warned them about.