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Patient-Led Research Collaborative Profile picture
@patientled
Jun 24, 2025 • 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 13
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!

1/patientresearchcovid19.com/2026-long-covi…
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/
Read 17 tweets
Patient-Led Research Collaborative Profile picture
Mar 11
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
Read 5 tweets
Patient-Led Research Collaborative Profile picture
Mar 14, 2025
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

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