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patientled.bsky.social
Patient-Led Research Collaborative
@patientled.bsky.social
9.4K followers 190 following 140 posts
Patient-Led Research for #LongCovid! http://patientledresearch.com
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Reposted by Patient-Led Research Collaborative
hyy24.bsky.social
Such a cool article about “long COVID” 🦠 which has affected millions of people (many of them being young adults) and how HIV🩸 research has helped us learn more about latent viruses! #PITT_ID26
February 15, 2026 at 8:02 PM
patientled.bsky.social
“HIV taught us how chronic viral infections can affect the body long after initial illness, and how important it is to involve patients in that research,” said @michaelpelusomd.bsky.social. “Applying those lessons to #LongCovid has helped us accelerate discovery” www.ucsf.edu/news/2026/01...
Solving Long COVID: How Decades of HIV Research Paved the Way
Discover how UCSF is leading the charge in Long COVID research, uncovering key findings that advance our understanding of the condition. UCSF researchers have adapted innovative tools and methodologie...
www.ucsf.edu
February 12, 2026 at 9:34 PM
patientled.bsky.social
One of the best sites running a wide variety of clinical trials for #LongCovid and other IACCs is @coresinai.bsky.social, via @putrinolab.bsky.social !

At least 5 trials are currently recruiting - see links below for eligibility!
cheery pink background with white and green pills in the foreground
February 12, 2026 at 1:29 AM
Reposted by Patient-Led Research Collaborative
chloedecanson.bsky.social
It’s an honour to have joined the @patientled.bsky.social as a contributor. The PLRC published the first study on long COVID, establishing the phenotypic characteristics of the disease doi.org/10.1016/j.ec..., and the most cited paper on LC, outlining its biomedical features doi.org/10.1038/s415...
Logo of the patient led collaborative
February 10, 2026 at 9:38 PM
Reposted by Patient-Led Research Collaborative
vashetc.bsky.social
it me ⬇️
patientled.bsky.social Patient-Led Research Collaborative @patientled.bsky.social · 12d
PLRC member Dr. Copeland has launched a research study on rest, energy, & #MECFS — open to people with ME/CFS & healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS.

More info: restandmecfs.com
This is a flyer for the Rest & ME/CFS research study, IRB number 26-6. It says "participate in a survey about rest, energy, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". In the upper right corner it says “Questions? Email Study Co-PI Victoria: empwrtc@protonmail.com”. Below the header is interwoven circles, one is black with text that says Fully Virtual, low- energy version included. The circle behind is an image of white silk wrinkled. Next to it text says “To participate you must be: Over the age of 18 AND EITHER Have ME/CFS worked with at research (self or professionally diagnosed) or be A medical/healthcare provider who has least one person with ME/CFS, currently practicing or conducting research”. Below this it says learn more at www.restandmecfs.com There are two icons on the bottom left corner. One says ETC and above it are six icon-stick figure people holding hands in a circle. Next to it is Cal Poly Pomona's logo, a diamond with an orangey yellow background and palm trees and a building inside. The Cal Poly Pomona Institutional Review Board has reviewed and approved for conduct this research involving human subjects under protocol IRB 26-6.
February 6, 2026 at 11:56 PM
Reposted by Patient-Led Research Collaborative
chromatowski.bsky.social
Would love for people with ME/CFS to check this out—as well as any researchers or healthcare providers who’ve ever worked with someone with ME/CFS!

#Medsky
patientled.bsky.social Patient-Led Research Collaborative @patientled.bsky.social · 12d
PLRC member Dr. Copeland has launched a research study on rest, energy, & #MECFS — open to people with ME/CFS & healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS.

More info: restandmecfs.com
This is a flyer for the Rest & ME/CFS research study, IRB number 26-6. It says "participate in a survey about rest, energy, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". In the upper right corner it says “Questions? Email Study Co-PI Victoria: empwrtc@protonmail.com”. Below the header is interwoven circles, one is black with text that says Fully Virtual, low- energy version included. The circle behind is an image of white silk wrinkled. Next to it text says “To participate you must be: Over the age of 18 AND EITHER Have ME/CFS worked with at research (self or professionally diagnosed) or be A medical/healthcare provider who has least one person with ME/CFS, currently practicing or conducting research”. Below this it says learn more at www.restandmecfs.com There are two icons on the bottom left corner. One says ETC and above it are six icon-stick figure people holding hands in a circle. Next to it is Cal Poly Pomona's logo, a diamond with an orangey yellow background and palm trees and a building inside. The Cal Poly Pomona Institutional Review Board has reviewed and approved for conduct this research involving human subjects under protocol IRB 26-6.
February 7, 2026 at 12:45 AM
Reposted by Patient-Led Research Collaborative
imangelia.blacksky.app
Sharing for my fellow fatiguers who may be interested in participating. 😊
patientled.bsky.social Patient-Led Research Collaborative @patientled.bsky.social · 12d
PLRC member Dr. Copeland has launched a research study on rest, energy, & #MECFS — open to people with ME/CFS & healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS.

More info: restandmecfs.com
This is a flyer for the Rest & ME/CFS research study, IRB number 26-6. It says "participate in a survey about rest, energy, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". In the upper right corner it says “Questions? Email Study Co-PI Victoria: empwrtc@protonmail.com”. Below the header is interwoven circles, one is black with text that says Fully Virtual, low- energy version included. The circle behind is an image of white silk wrinkled. Next to it text says “To participate you must be: Over the age of 18 AND EITHER Have ME/CFS worked with at research (self or professionally diagnosed) or be A medical/healthcare provider who has least one person with ME/CFS, currently practicing or conducting research”. Below this it says learn more at www.restandmecfs.com There are two icons on the bottom left corner. One says ETC and above it are six icon-stick figure people holding hands in a circle. Next to it is Cal Poly Pomona's logo, a diamond with an orangey yellow background and palm trees and a building inside. The Cal Poly Pomona Institutional Review Board has reviewed and approved for conduct this research involving human subjects under protocol IRB 26-6.
February 6, 2026 at 11:05 PM
patientled.bsky.social
PLRC member Dr. Copeland has launched a research study on rest, energy, & #MECFS — open to people with ME/CFS & healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS.

More info: restandmecfs.com
This is a flyer for the Rest & ME/CFS research study, IRB number 26-6. It says "participate in a survey about rest, energy, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". In the upper right corner it says “Questions? Email Study Co-PI Victoria: empwrtc@protonmail.com”. Below the header is interwoven circles, one is black with text that says Fully Virtual, low- energy version included. The circle behind is an image of white silk wrinkled. Next to it text says “To participate you must be: Over the age of 18 AND EITHER Have ME/CFS worked with at research (self or professionally diagnosed) or be A medical/healthcare provider who has least one person with ME/CFS, currently practicing or conducting research”. Below this it says learn more at www.restandmecfs.com There are two icons on the bottom left corner. One says ETC and above it are six icon-stick figure people holding hands in a circle. Next to it is Cal Poly Pomona's logo, a diamond with an orangey yellow background and palm trees and a building inside. The Cal Poly Pomona Institutional Review Board has reviewed and approved for conduct this research involving human subjects under protocol IRB 26-6.
February 6, 2026 at 10:51 PM
Reposted by Patient-Led Research Collaborative
chromatowski.bsky.social
“Finding a cure for long COVID needs to become a top research and health-care priority. Although clinical trials in adults are ongoing and increasing in numbers, none have yet been launched for children….This delay leaves millions of children without treatment during crucial developmental years.”
Long COVID is here to stay—even in children
Post-acute sequelae of SARS-CoV-2 infection (PASC, also known as long COVID) are complex, multisystem, long-lasting complications of SARS-CoV-2 infection that profoundly impact the daily life of those...
www.thelancet.com
January 29, 2026 at 8:36 PM
Reposted by Patient-Led Research Collaborative
chromatowski.bsky.social
“The new evidence that reinfections can trigger or worsen this chronic condition [in children] suggests that the societal burden is set to grow. With no therapy currently available, the number of children living with a chronic and often debilitating illness will continue to rise.”
Long COVID is here to stay—even in children
Post-acute sequelae of SARS-CoV-2 infection (PASC, also known as long COVID) are complex, multisystem, long-lasting complications of SARS-CoV-2 infection that profoundly impact the daily life of those...
www.thelancet.com
January 29, 2026 at 8:00 PM
Reposted by Patient-Led Research Collaborative
chromatowski.bsky.social
“Reinfection was associated with more than double the risk of a long COVID diagnosis” in a large study of children and adolescents.
January 29, 2026 at 7:59 PM
patientled.bsky.social
Today is the last day to support our matching gift campaign — a few generous donors are doubling all donations up to $100,000!

Check out the highlights of our 2025 work in the thread below, and help us keep our work rolling through 2026.

Support: patientresearchcovid19.com?form=FUNYUWT...
Purple background with white and yellow text that reads: "Some highlights of PLRC’s impact since 2020, •50 Publications •10,000+ Citations •$5 Million Raised for 10 Biomedical Studies •158+ Research Collaborators •7 Project ECHO Presentations since 2023"
December 31, 2025 at 10:01 PM
Reposted by Patient-Led Research Collaborative
patientled.bsky.social
Thank you to everyone who made our work possible this year! Here's a thread on some of the highlights from PLRC's research, advocacy and education efforts in 2025.

All of this work is carried out by a team living with #LongCovid 🧵 /1
December 30, 2025 at 10:33 PM
Reposted by Patient-Led Research Collaborative
theskylark.bsky.social
🧵
patientled.bsky.social Patient-Led Research Collaborative @patientled.bsky.social · Dec 30
Thank you to everyone who made our work possible this year! Here's a thread on some of the highlights from PLRC's research, advocacy and education efforts in 2025.

All of this work is carried out by a team living with #LongCovid 🧵 /1
December 30, 2025 at 11:01 PM
Reposted by Patient-Led Research Collaborative
chloedecanson.bsky.social
This thread shows the extraordinary work that the Patient-Led Research Collaborative (working on Long COVID and other infection-associated chronic conditions) has done, incl. scientific work that has challenged and massively improved the research that people without Long COVID do on the disease 1/
patientled.bsky.social Patient-Led Research Collaborative @patientled.bsky.social · Dec 30
Thank you to everyone who made our work possible this year! Here's a thread on some of the highlights from PLRC's research, advocacy and education efforts in 2025.

All of this work is carried out by a team living with #LongCovid 🧵 /1
December 30, 2025 at 11:08 PM
patientled.bsky.social
Thank you to everyone who made our work possible this year! Here's a thread on some of the highlights from PLRC's research, advocacy and education efforts in 2025.

All of this work is carried out by a team living with #LongCovid 🧵 /1
December 30, 2025 at 10:33 PM
Reposted by Patient-Led Research Collaborative
bhanlon15.bsky.social
Meaningful Christmas moments like this, getting this note & kind gesture from a loved one ❤️❤️

@patientled.bsky.social

Sending light & love to all in our community during this holiday season.
December 25, 2025 at 4:06 PM
Reposted by Patient-Led Research Collaborative
romatowski.bsky.social
So grateful to the community that sustains PLRC’s pathbreaking work on Long Covid and related conditions like ME/CFS. Living with an illness that has zero FDA-approved treatments, the first-class research PLRC leads is such a source of hope to me.

Gifts are doubled through the end of the year!
Selfie of me in a black t-shirt embroidered with the multi-colored Patient-Led Research Collaborative logo. I’m a 40ish white woman with dark hair and no makeup, leaning back on a pillow.
December 2, 2025 at 11:53 PM
Reposted by Patient-Led Research Collaborative
romatowski.bsky.social
If you’re not familiar with @patientled.bsky.social’s uniquely successful model, here’s a nice write-up.

“I’ll admit that I was skeptical…Given the complexity of the science, wouldn’t the N.I.H. be better suited to this role than the patients, some of whom are very ill?

“I was wrong.”

#LongCovid
Opinion | A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves (Published 2024)
www.nytimes.com
December 3, 2025 at 12:02 AM
Reposted by Patient-Led Research Collaborative
theskylark.bsky.social
🧵
patientled.bsky.social Patient-Led Research Collaborative @patientled.bsky.social · Dec 2
We're thrilled to announce that thanks to two generous donors, the Silver Giving Foundation and Lunardelli-McRee family, all donations made to PLRC will be matched up to $100K through January 1 of next year!

Support our work: patientresearchcovid19.com/donate/
PLRC logo on the top left, large decorative PLRC logo on the white background, text in the middle on a purple background that reads, "YOUR GIFT GOES TWICE AS FAR (in white font), We're thrilled to announce that thanks to two generous donors, all donations made to PLRC will be matched up to $100K through January 1. (in black font with gold highlight), patientresearchcovid19.com/donate (at the bottom in blue)
December 2, 2025 at 10:03 PM
Reposted by Patient-Led Research Collaborative
chromatowski.bsky.social
So grateful to friends and family who sustain PLRC’s critical work.

When so much Long Covid and IACC research misses the mark because it leaves out what we know from actually living w/these conditions, PLRC performs a critical function in bridging that disconnect. Please help keep that work going!
patientled.bsky.social Patient-Led Research Collaborative @patientled.bsky.social · Dec 2
We're thrilled to announce that thanks to two generous donors, the Silver Giving Foundation and Lunardelli-McRee family, all donations made to PLRC will be matched up to $100K through January 1 of next year!

Support our work: patientresearchcovid19.com/donate/
PLRC logo on the top left, large decorative PLRC logo on the white background, text in the middle on a purple background that reads, "YOUR GIFT GOES TWICE AS FAR (in white font), We're thrilled to announce that thanks to two generous donors, all donations made to PLRC will be matched up to $100K through January 1. (in black font with gold highlight), patientresearchcovid19.com/donate (at the bottom in blue)
December 2, 2025 at 9:23 PM
patientled.bsky.social
We're thrilled to announce that thanks to two generous donors, the Silver Giving Foundation and Lunardelli-McRee family, all donations made to PLRC will be matched up to $100K through January 1 of next year!

Support our work: patientresearchcovid19.com/donate/
PLRC logo on the top left, large decorative PLRC logo on the white background, text in the middle on a purple background that reads, "YOUR GIFT GOES TWICE AS FAR (in white font), We're thrilled to announce that thanks to two generous donors, all donations made to PLRC will be matched up to $100K through January 1. (in black font with gold highlight), patientresearchcovid19.com/donate (at the bottom in blue)
December 2, 2025 at 8:56 PM
Reposted by Patient-Led Research Collaborative
julialmv.bsky.social
We are up to 688 LoCITT participants!

If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.

We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
LoCITT-T - Long COVID Treatment Trial
The Long COVID Treatment Trial-Tirzepatide (LoCITT-T) is investigating the efficacy of repurposing this drug to treat Long COVID.
longcovid.scripps.edu
November 21, 2025 at 7:59 PM
Reposted by Patient-Led Research Collaborative
elea.fyi
I don’t want to formulate words yet, but my friend Alice Wong, @sfdirewolf.bsky.social of the Disability Visibility Project, has passed.

Here are the words she left behind:
www.instagram.com/p/DREMDNBjnq...
Alice Wong on Instagram: "ID: Yellow background with black text "This is Alice's friend Sandy Ho, posting. Per Alice's wishes, this message is being shared at the time of her passing. Hi everyone, it ...
423 likes, 73 comments - alicatsamurai on November 14, 2025: "ID: Yellow background with black text "This is Alice's friend Sandy Ho, posting. Per Alice's wishes, this message is being shared at the t...
www.instagram.com
November 15, 2025 at 5:57 AM