Patient-Led Research Collaborative (@patientled) / X

Patient-Led Research Collaborative

3,570 posts

Patient-Led Research Collaborative

@patientled

Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!

Joined November 2020

Pinned
Patient-Led Research Collaborative
@patientled
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. sciencedirect.com/science/articl… 1/
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Patient-Led Research Collaborative
@patientled
Nov 22, 2022
Big news! We are *thrilled* to announce the $4.8 million in research awards for #LongCovid & associated conditions from our Patient-Led Biomedical Fund today! These were decided by a panel of 15 patient-experts & we're funding 9 exceptional projects! patientledresearch.com/press-releases/ 1/
Patient-Led Research Collaborative
@patientled
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. researchsquare.com/article/rs-490… 1/
researchsquare.com
Long COVID and associated outcomes following COVID-19 reinfections: Insights from an International...
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...
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Patient-Led Research Collaborative
@patientled
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! sanders.senate.gov/wp-content/upl… #LongCovid 1/
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Patient-Led Research Collaborative
@patientled
Apr 22, 2022
We are excited to share that we have received $3 million from Balvi for research into #LongCovid! Balvi is a direct giving fund, established by @VitalikButerin, for high-impact COVID projects. See our full announcement here: patientledresearch.com/balvi-press-re… 1/
Patient-Led Research Collaborative
@patientled
Jul 15, 2021
We are thrilled to announce that after 13 months of work, our 3rd paper on #LongCOVID is officially peer-reviewed & published by @TheLancet's @eClinicalMed! "Characterizing long COVID in an international cohort: 7 months of symptoms and their impact": thelancet.com/journals/eclin… 1/
thelancet.com
Characterizing long COVID in an international cohort: 7 months of symptoms and their impact
Patients with Long COVID report prolonged, multisystem involvement and significant disability. By seven months, many patients have not yet recovered (mainly from systemic and neurological/cognitive...
Patient-Led Research Collaborative
@patientled
Jan 18, 2024
Good morning! We’re live tweeting today’s hearing on Long Covid from the Senate Health, Education, Labor & Pensions Committee. Follow this thread – or watch the live stream here: help.senate.gov/hearings/addre… #LongCovid 1/
Addressing Long COVID: Advancing Research and Improving Patient Care | The U.S. Senate Committee on...
From help.senate.gov
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Patient-Led Research Collaborative
@patientled
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.🩵 patientresearchcovid19.com/2025-long-covi… 1/
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Patient-Led Research Collaborative
@patientled
Aug 28, 2023
Super excited to see new #LongCovid research out that our @patientled Research Fund funded! Amyloid deposits were found in skeletal muscle tissue during Post-Exertional Malaise:
Resia Pretorius
@resiapretorius
Aug 28, 2023
Wonderful to see the @RobWust team at the #KSLongCoVID24 symposium. They found amyloid deposits, identified by ThT in the muscle. Perhaps due to movement of the amyloid deposits via the damaged vasculature?
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Patient-Led Research Collaborative
@patientled
Sep 26, 2022
We're putting together a regular publication of patient-generated research hypotheses, published for researchers to pursue! If you have a hypothesis & are a patient with #LongCovid, ME/CFS or a related condition, submit here by Oct 31: forms.gle/8QYfY9nCtSdJQM… Please RT! 1/
docs.google.com
Patient-Led Hypotheses
The Patient-Led Hypothesis Generation Panel is collecting patient-generated hypotheses about chronic, complex diseases (e.g. Long Covid, ME/CFS, POTS/dysautonomia, EDS/connective tissue disorders,...
Patient-Led Research Collaborative
@patientled
Jul 12, 2022
We're super excited to announce the panelists for our Patient-Led Research Fund, which will decide on $5 million in grants for research into #LongCovid & associated illnesses. All 15 panelists are patient-researchers who have Long Covid and/or ME/CFS!
Patient-Led Research Collaborative
@patientled
Dec 18, 2023
Today a coalition of clinicians, researchers, RECOVER PIs, patient & disability orgs, and more sent an open letter to President Biden, urging him to address the crisis of #LongCovid & other infection-associated chronic conditions in his FY25 budget patientresearchcovid19.com/advocacy/lette… 1/
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Patient-Led Research Collaborative
@patientled
Sep 24, 2024
Replying to @patientled
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/
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Patient-Led Research Collaborative
@patientled
May 26, 2023
We’re excited to announce that the 1st issue of the Patient-Generated Hypotheses Journal is available as a pdf on our website! This issue includes 6 hypotheses + poll results created by patients w/ #LongCOVID or associated conditions (or caregivers). patientresearchcovid19.com/patient-genera…
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