Patient-Led Research

Last week, we released a new preprint on reinfections.

This paper details the impact of COVID-19 reinfections on both people with and without #LongCovid.

Overall, the odds of Long COVID increase with reinfections.

Read the preprint here (link also in bio):
https://www.researchsquare.com/article/rs-4909082/v1

Long COVID and associated outcomes following COVID-19 reinfections: Insights from an International Patient-Led Survey

Background: COVID-19 reinfections are common worldwide. Long COVID is a serious infection-associated chronic condition and a major public health concern. Using a patient-centered approach, we characterized the association between reinfections and Long COVID. Methods: We developed and dissemi...

Oct 4, 2024 at 3:41pmWeb
Show threadPatient-Led ResearchOct 4, 2024

Those who had 2 COVID infections were 2.14 times more likely, and those who had 3 or more COVID infections were 3.75 times more likely, to report #LongCOVID than those with one infection.

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Show threadPatient-Led ResearchOct 4, 2024
The odds of both severe fatigue and post-exertional malaise, two debilitating symptoms, increased with reinfections. 3/ #LongCovid
Show threadPatient-Led ResearchOct 4, 2024
The frequency and severity of post-exertional malaise (PEM) increased with reinfections. 4/ #LongCovid
Show threadPatient-Led ResearchOct 4, 2024
The severity of fatigue, as measured by the Fatigue Severity Scale, also increased with reinfections. 5/ #LongCovid
Show threadPatient-Led ResearchOct 4, 2024
The odds of having limitations to physical functioning increased with COVID reinfections, including bathing and dressing limitations, limitations to moderate activity such as pushing a vacuum cleaner, and social limitations. 6/ #LongCovid
Show threadPatient-Led ResearchOct 4, 2024
Reinfections increased the odds of reporting poor immune health, including having had many other infections and taking longer to recover from common infections. 7/ #LongCovid
Show threadPatient-Led ResearchOct 4, 2024
The number of vaccines and boosters prior to an infection reduced the odds of Long COVID, but their protective effect was diminished by reinfections. 8/
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For those who menstruated, reinfections were associated with worsening of ongoing or chronic health issues related to the menstrual cycle. 9/ #LongCovid
Show threadPatient-Led ResearchOct 4, 2024

The paper is full of interesting findings, but a few others that stand out:

Only a small percentage reported being prescribed antivirals for acute COVID. 10/

Show threadPatient-Led ResearchOct 4, 2024

Participants were less likely to report getting a COVID test the more reinfections they experienced, likely due to decreased societal testing over time.

However: they were more likely to test if someone around them tested positive. 11/

Show threadPatient-Led ResearchOct 4, 2024
Trans, nonbinary, agender, and other gender nonconforming people were less likely to report being prescribed medication for acute COVID. 12/ #LongCovid
Show threadPatient-Led ResearchOct 4, 2024

The co-authors are all PLRC (@patientled) members who are researchers & have #LongCovid, with affiliations at UCSF, Yale, Howard Hughes Medical Institute, U of Wyoming, U of Bern, U of Bristol,
Long Covid Chile & Black COVID-19 Survivors Alliance.

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Show threadPatient-Led ResearchOct 4, 2024

This was a huge effort over years - thank you to everyone who contributed

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Show threadAuscandocOct 4, 2024
@patientled Really useful information. Thank you.
Show threadJ.H.NoyesOct 4, 2024
@patientled
Fucking bastards, especially given that the aforementioned demographic has got to be at a higher risk for developing complications, particularly Long Covid. LC loves the neurodivergent.
Show threadAndreas BurgerOct 4, 2024

@patientled really high numbers. why the common communication ist 10%?

and how is the development with more vaccinations?

Show threadRobotistryOct 6, 2024

@aburgerabz @patientled Each plot in the figure represents a different vaccination status. All plots are proportion of survey respondents, not probability in the general population.

Comparing plot 1 (1 vaccination) to plot 4 (4 vaccinations/boosters), we can see that the proportion of respondents with 4 shots having prolonged symptoms from the 5th infection is roughly the same as respondents with 1 shot having prolonged symptoms from the 1st infection.