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Patient-Led Research Collaborative Profile picture
Patient-Led Research Collaborative
@patientled
Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
4 subscribers
Oct 2 • 7 tweets • 2 min read
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/
Sep 24 • 14 tweets • 4 min read
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/
Aug 30 • 7 tweets • 2 min read
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/
Aug 22 • 11 tweets • 2 min read
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.
Aug 9 • 9 tweets • 2 min read
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
Aug 2 • 14 tweets • 3 min read
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…
Jun 17 • 15 tweets • 3 min read
NEW #LongCovid definition from @theNASEM:

"Long COVID is an IACC that occurs after SARS-CoV-2 infection & is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems"

Full report & thoughts👇🧵/1 Infographic of the 2024 NASEM Long Covid definition sharing 5 key features: 1. Attribution to infection (no + test required) 2. Onset and duration (at least 3 months and can be continuous or delayed onset following infection) 3. Symptoms (more than 200 symptoms and conditions possible) 4. Equity (can affect children and adults regardless of background) 5. Functional Impairment (can have profound impact on quality of life) This #LongCovid definition was developed by @theNASEM — commissioned by @HHSGov through @ASPRgov & OASH — to promote consistency in diagnoses, aid awareness efforts, help patients access care & benefits, harmonize LC research, & public health monitoring/regulations /2

1 pager👇 Official one pager of the 2024 NASEM Long COVID definition, which shares important features of the condition. This can be found at: https://nap.nationalacademies.org/resource/27768/One_pager_Long_COVID_Definition.pdf
May 17 • 182 tweets • 48 min read
🧵The @polybioRF Spring Symposium is starting shortly! Follow this thread – we'll be following along and livetweeting updates throughout the event. @polybioRF Dr. Amy Proal @polybioRF kicking things off with the history of the foundation, its Long Covid Research Consortium, and its focus on the viral persistence hypothesis. This culminated in this position paper published last year. 1/nature.com/articles/s4159…
Jan 18 • 146 tweets • 18 min read
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:

#LongCovid 1/help.senate.gov/hearings/addre… @SenSanders begins the hearing: "Today we will be talking about an issue that has not gotten the attention it deserves...Long COVID." "By the way, we have a full house here. An overflow room is over there."
Dec 18, 2023 • 5 tweets • 2 min read
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


1/patientresearchcovid19.com/advocacy/lette… The current steps the Administration is taking are insufficient to mitigate the devastating impact of Long COVID & other IACCs. NIH budgets have been silent on future funding for LC research & there hasn't been enough focus on providing care & a comprehensive social safety net 2/
Oct 30, 2023 • 11 tweets • 5 min read
Viral persistence is one of the leading hypotheses on what causes #LongCovid. Over the years we've done a lot of work to highlight, support, & grow this line of research. Some of this work:

1/ We are funding one of the only clinical trials designed to address viral persistence as the main cause of #LongCovid, with a monoclonal antibody called AER002:

2/
May 24, 2023 • 10 tweets • 6 min read
1/ New @patientled paper alert!

Reproductive health issues after COVID are well known among #LongCovid patients but are not adequately studied.

For @FrontRehSci, we reviewed studies on repro health impacts of Long COVID & associated conditions in women: doi.org/10.3389/fresc.… 2/ There has been a huge need for this work and we're excited to say it is already the most viewed article published by @FrontRehSci so far in 2023! #LongCovid Four-panel diagram listing ...
May 15, 2023 • 36 tweets • 13 min read
We have a new paper out in @NatMentHealth on mental health & coping in #LongCovid!

Mental health is historically complex to study in post-viral illnesses, & we were lucky to have this work led by @YochaiReemMD, a psychiatrist with lived experience of Long Covid himself!

1/ Content warning for discussion of suicidal thoughts in thread.

2/
Apr 17, 2023 • 6 tweets • 3 min read
Today is our 3 year anniversary working to understand what's happening in #LongCovid.

We are tired and also committed to this fight for our community until answers are found. 1/ In the past year, we've launched a patient-generated hypothesis publication; awarded $5 million in biomedical research; launched a reinfections survey; studied the impact of #LongCovid in LMIC; created scorecards to rate patient engagement in research 2/

patientresearchcovid19.com/patient-led-re…
Jan 17, 2023 • 9 tweets • 3 min read
🚨Attention all those who value patient-led research! 🚨

In partnership with @CMSSmed & funded by @PCORI, we have developed scorecards that evaluate how effective a patient group and research partner collaboration will be at conducting truly patient-led research The goal of these scorecards is to demonstrate how patient groups and research partners can improve their inclusion of patients in the research process so that the research centers patients and leads to improved outcomes for all.
Nov 22, 2022 • 11 tweets • 5 min read
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/ 1) A project looking at microbial metabolites as disease-modifying factors in #LongCovid.

2) A project to unravel the pathophysiology of post-exertional malaise (PEM) in Long COVID and ME/CFS, including looking at blood and muscle biomarkers.

2/
Jul 29, 2022 • 4 tweets • 3 min read
We are super excited to announce the Request for Proposals for our $5 million in funding for #LongCovid & associated conditions!

Please RT & circulate to any researchers with ideas for biomedical research! patientresearchcovid19.com/projects/patie… #pwME #NEISvoid

Deadline is September 23rd!

1/ Patient-Led Research Collaborative is awarding $5 million (U The RFP can be found on our website here:
patientresearchcovid19.com/projects/patie… and here as well: docs.google.com/document/d/1jp…

A webinar will be held on September 1st for Q&A. Any others questions can be sent to team+questions@patientledresearch.com!

2/
Jul 29, 2022 • 11 tweets • 2 min read
3:00 pm ET panel on Public Health at IACFS/ME. Learning objectives
Jul 29, 2022 • 22 tweets • 5 min read
Starting at 1:40 pm ET at IACFS/ME, first panel discussion on COVID-19 related topics.

#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic Learning objectives for these talks.
Jul 29, 2022 • 17 tweets • 12 min read
Prof. Akiko Iwasaki @VirusesImmunity of @Yale @YaleMed is the keynote speaker of #IACFSME conference, presenting today on the immunology of Long COVID. #viruses #immunology #CovidIsNotOver #mecfs #LongCovid #COVID19 @itsbodypolitic Dr. Iwasaki explains that SARS-Cov2 is “one of many unexplained post-acute infection syndromes [that]
occur after encounter with many distinct pathogens” (such as EBV, polio, & dengue). @NIH #LongCovid #LongCovidKids
Jul 29, 2022 • 17 tweets • 19 min read
Next, whose presentation within the module, Clinical Cases, is an interactive session, Dr. Lucinda Bateman @bateman_md spoke: “Can discordant identical twins become concordant for ME/CFS?” #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic Dr. Bateman speaks of a case study: an identical twin female, 17years, track athlete, who developed severe exhaustion affecting every area of her life. She was able to attend college, but never able to work full-time. #MECFS