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.
2/
The odds of both severe fatigue and post-exertional malaise, two debilitating symptoms, increased with reinfections. 3/ #LongCovid
The frequency and severity of post-exertional malaise (PEM) increased with reinfections. 4/ #LongCovid
The severity of fatigue, as measured by the Fatigue Severity Scale, also increased with reinfections. 5/ #LongCovid
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
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
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/
For those who menstruated, reinfections were associated with worsening of ongoing or chronic health issues related to the menstrual cycle. 9/ #LongCovid
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/
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/
Trans, nonbinary, agender, and other gender nonconforming people were less likely to report being prescribed medication for acute COVID. 12/ #LongCovid
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, @LongCovidChile & Black COVID-19 Survivors Alliance (@BCSAlliance).
13/
@LongCovidChile @BCSAlliance This was a huge effort over years - thank you @leticiasaurus @TheMegascope & @GinaAssaf for leading & @LisaAMcCorkell @ahandvanish Alison Cohen @jannamoen @LG_Shoemaker Leo Liu @dsethlewis @rach_r0bles @rusty_cjm Jerry Lin, Teri Akintonwa, @ssaraviaandre & @herlifeinpixels! 14/
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For #LongCovid Awareness Day, we’re releasing the 2026 Long Covid Fact Sheet! This is a list of key statistics about LC, using recent data to reflect contemporary risks.
We hope this will be useful for journalists, policymakers, patients, & others!
Key points: #LongCovid rates remain high, and reinfections increase the risk of developing LC.
Long COVID is one of the most common illnesses today in both adults and children, and the majority of LC cases happen from “mild” acute infections. 2/
COVID causes permanent & serious conditions. In non-hospitalized people, the risk of cardiovascular & neurological diseases (myocarditis, pulmonary embolism, heart failure, Alzheimer’s, stroke, memory, neuropathy, migraine, hearing/vision) stay elevated for at least a year. 3/
We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @RTHM_Health to help patients & providers explore treatment options together.
The guide focuses on 24 medications, but includes a few other interventions for breadth /1 rthm.com/treatmentguide
This guide is meant to spark meaningful conversations between patients and their clinicians about treatment options that could become part of a personalized care plan. Note: it is not an exhaustive list, nor is it intended to serve as medical advice. /2
Treatments were selected using a combo of clinical study evidence, clinician experience, expertise of people with LC, and IACC data. We prioritized options where >20% of people reported moderate to substantial benefit in the Harvard–Stanford TREATME Study by @organichemusic. /3
The facts cover the basics, as well as current information on incidence, reinfections, research, and lesser known topics.
To start:
Long COVID is a global public health crisis, affecting over 400 million people worldwide. 2/
Long COVID is common. As of fall 2024, at least 1 in 19 US adults are currently living with Long COVID - similar to the rate of diabetes - with many additional cases likely going undiagnosed or misdiagnosed. 3/
We’re happy to announce a new @patientled preprint out today, on machine learning phenotypic with high-dimensional #LongCovid symptom data!
We used a dataset of 162 symptoms in 6,031 participants to explore making clusters of Long Covid patients. 1/ researchsquare.com/article/rs-490…
In sum, we used three different machine learning methods (a genetically optimized deep learning model, ensemble clustering, and probabilistic modeling).
We found that consistent clusters were *not* discovered across the three methods. 2/
This implies both that:
a) symptoms may not be the best way to create phenotypes of #LongCovid patients
b) studies that use fewer symptoms, fewer patients, or only use a single clustering methodology might be detecting phenotypes that are not robust or repeatable
3/
Population-wide, 10.4% of people with pre-existing disabilities had #LongCovid as of summer 2022, vs 7.5% without. 2/
The prevalence of #LongCovid was highest in those with chronic illness (diabetes, asthma) & lowest in those with sensory disabilities (deafness, blindness).
With the exception of sensory disabilities, all disability categories had higher LC rates than the general population. 3/
We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID!
Strong, high-impact trials are critical & most current ones are insufficient. The paper gives guidance on treatments, outcomes, design, participant inclusion, & more.
It also gives an overview of the promising interventions being trialed (as of May 2024) for #LongCovid and their targets, including viral persistence, immune dysfunction, endothelial dysfunction, and symptom management. 2/
Some other key points:
-Trials should prioritize potentially curative interventions, including repurposed drugs and the development of new drugs.
-Combinations of therapies may be beneficial or necessary, which should be considered in clinical trial design. 3/