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Patient-Led Research Collaborative Profile picture
@patientled
Jun 24 • 1 tweets • 1 min read • Read on X
We're hosting a Patient-Led Research Fund (PLRF) webinar on July 9, 1–4:30PM ET!

Hear results from 10 PLRF-funded biomedical studies (on microclots, T cell exhaustion, trials, & more), all selected by a panel of patient-researchers.

Register:
#LongCOVID us02web.zoom.us/webinar/regist…patient-led research fund webinar infographic with an address to bit.ly/PLRF-2025
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More from @patientled

Patient-Led Research Collaborative Profile picture
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
Patient-Led Research Collaborative Profile picture
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
Patient-Led Research Collaborative Profile picture
Sep 24, 2024
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
Read 14 tweets
Patient-Led Research Collaborative Profile picture
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
Patient-Led Research Collaborative Profile picture
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
Patient-Led Research Collaborative Profile picture
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

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