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Sep 24, 2024 14 tweets 4 min read Read on X
We are thrilled to release a new preprint on reinfections today!

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.

1/researchsquare.com/article/rs-490…
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 pic of odds ratios showing higher fatigue and PEM
The frequency and severity of post-exertional malaise (PEM) increased with reinfections. 4/ #LongCovid Image
The severity of fatigue, as measured by the Fatigue Severity Scale, also increased with reinfections. 5/ #LongCovid image of fatigue increasing with reinfections
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 Image
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 graphs showing reinfections increase number of people agreeing with statements 'it takes longer to recover from common infections' and 'I have had many other infections'
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/ Image
For those who menstruated, reinfections were associated with worsening of ongoing or chronic health issues related to the menstrual cycle.  9/ #LongCovid Image
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/ Image
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/ Image
Trans, nonbinary, agender, and other gender nonconforming people were less likely to report being prescribed medication for acute COVID. 12/ #LongCovid chart showing trans, nonbinary, agender and other gender nonconforming patients were less likely to be prescribed medication against acute covid
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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More from @patientled

Mar 14
This week for #LongCovidAwarenessDay, we’ve compiled a fact sheet of up-to-date statistics & citations on Long COVID.

Data is one of the most useful tools to strengthen understanding of #LongCovid. We hope this resource helps our community's fight.🩵

1/ patientresearchcovid19.com/2025-long-covi…image of the teal Long COVID Awareness Day logo
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/
Read 25 tweets
Oct 2, 2024
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…
three clusters of Long Covid symptoms, showing inconsistent clusters across three machine learning methods
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/
Read 7 tweets
Aug 30, 2024
New collaborative paper out! The paper looks at rates of #LongCovid in those with long-term disabilities.

Of people who got COVID, 40.6% of people with pre-existing disabilities got Long Covid, vs 18.9% of people without pre-existing disabilities.

1/ajph.aphapublications.org/doi/10.2105/AJ…
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/
Read 7 tweets
Aug 22, 2024
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.

1/sciencedirect.com/science/articl…
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/ table of interventions being trialed for Long Covid, including monoclonal antibodies, truvada and maraviroc, IVIG, and others.
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/
Read 11 tweets
Aug 9, 2024
We are happy to announce a new #LongCovid review out in Nature!

This was led by @zalaly, with co-authors @leticiasaurus @LisaAMcCorkell and @ahandvanish from PLRC, alongside @VirusesImmunity, @EricTopol, and @swulfie.



Some highlights:

1/nature.com/articles/s4159…
It puts the most conservative estimate of cumulative global incidence of #LongCovid in 2023 at around 400 million individuals.

As people have stopped testing and tests already had high inaccuracy rates to begin with, this is a low estimate, but still an enormous number. 2/ chart showing an estimated 409 million global Long Covid cases as of 2023
The economic impact of #LongCovid is at least $1 trillion *per year* - equivalent to 1% of the global GDP.

3/ impact of Long Covid on 8 countries, showing GDP loss due to Long Covid at -2.3% to -0.5%
Read 9 tweets
Aug 2, 2024
Today, we are thrilled to see the introduction of The Long COVID Research Moonshot Act by Senator Bernie Sanders (@SenSanders), co-sponsored by Senators @SenTimKaine, @SenDuckworth, @SenMarkey, @SenPeterWelch, and @SenTinaSmith!



#LongCovid 1/sanders.senate.gov/wp-content/upl…
9 months ago, our co-founder Lisa McCorkell (@LisaAMcCorkell) & Long COVID researcher Michael Peluso (@MichaelPelusoMD) called for a Moonshot for Long Covid - an investment of at least $1 billion yearly for 10 years into Long Covid research. 2/

#LongCovidnature.com/articles/d4158…
The Act is a historic piece of legislation. It includes $1 billion/yr for 10 years to NIH to establish & run a #LongCovid Research Program, led by a Director with expertise in Long COVID. Clinical trials & the development of new interventions would be prioritized & expedited. 3/
Read 14 tweets

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