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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!
LM Profile picture 1 subscribed
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
Jul 29, 2022 • 8 tweets • 10 min read
2nd day of Research Presentations at the IACFS/ME Conference iacfsme.org/2022-conferenc…: Dr. Lily Chu, Vice-President of #iacfsme welcomed attendees and presenters. #CovidIsNotOver #mecfs #LongCovid @itsbodypolitic #COVID19 Dr. Daiki Takewaki presented from Tokyo on how:“Dysbiosis in the gut microbiome accompanies skewed immunological and clinical parameters in patients with ME/CFS”. #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Jul 28, 2022 • 12 tweets • 6 min read
Next up at the #IACFSME conference is Dr. Nicola Clague-Baker @ClagueNjc36 presenting on “Feasibility of investigating oxygen consumption (VO2), heart rate variability, blood pressure and lactic acid levels of people with myalgic encephalomyelitis during normal daily activities”. This was a (successful) feasibility study, with enrollment being closed after 24h, showing that physiological measurement during everyday activity is possible for those patients with mild to severe #MECFS .
Jul 28, 2022 • 22 tweets • 3 min read
IACFSME at 3:45 pm ET -- Panel on Metabolism and Co-Morbid Conditions.

#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic Here are the learning objectives listed for these talks.
Jul 28, 2022 • 16 tweets • 8 min read
Up next at #IACFSME: three presentations under the Immunology track. Starts at 1:30 pm ET.

#CovidIsNotOver #mecfs #LongCovid #COVID19 @itsbodypolitic Background info on Dr. Roy's paper: Here we report a potential mouse model that displays ME/CFS pathologies after two weeks of gavaging with 5 mg/kg bwt of compound # 13563531, a potent autophagy inhibitor.
Jul 28, 2022 • 14 tweets • 10 min read
1st day of Research Presentations at the 15th IACFS/ME Conference: Fred Friedberg, President of IACFS/ME, welcomed participants and discussed the non-profit organization’s missions: promoting science-based care, publishing peer-reviewed papers, hosting conferences on #MECFS. Dr. David Systrom, pulmonologist, presented on the pathophysiology of exercise intolerance in ME/CFS & Long COVID.
iacfsme.org/2022-conferenc… #CovidIsNotOver #MECFS #LongCovid #iacfsme #COVID19 @itsbodypolitic
Apr 22, 2022 • 11 tweets • 4 min read
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/ A screenshot of the beginning of the press release which sta This will fund 5 projects.

We are immediately directing $2m into a biomedical research fund, which will distribute funds decided by a panel of patient-researchers with #LongCovid & associated illnesses.

The remaining $1 million will be directed to 4 projects run by PLRC:

2/ A budget of how the 3 million will be distributed. 2 million
Apr 18, 2021 • 26 tweets • 20 min read
It's hard to believe, but one year ago today, we launched our first #LongCOVID survey out of the @itsbodypolitic support group. Today is our anniversary! 🎉

A few things we've achieved in the past year:

1/ We released the first report on #LongCOVID, including 62 symptoms, recovery timecourse, medical support, stigma, & more.

We worked fast: 9 days after the survey closed, we released a *52-page* report complete with statistical analysis & visualizations. 2/
patientresearchcovid19.com/research/repor…