Patient-Led Research Collaborative
@patientled.bsky.social
Patient-Led Research for #LongCovid! http://patientledresearch.com
Reposted by Patient-Led Research Collaborative
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!
Gifts are doubled through the end of the year!
December 2, 2025 at 11:53 PM
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!
Gifts are doubled through the end of the year!
Reposted by Patient-Led Research Collaborative
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
“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
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
“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
Reposted by Patient-Led Research Collaborative
🧵
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/
Support our work: patientresearchcovid19.com/donate/
December 2, 2025 at 10:03 PM
🧵
Reposted by Patient-Led Research Collaborative
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!
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!
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/
Support our work: patientresearchcovid19.com/donate/
December 2, 2025 at 9:23 PM
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!
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!
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/
Support our work: patientresearchcovid19.com/donate/
December 2, 2025 at 8:56 PM
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/
Support our work: patientresearchcovid19.com/donate/
Reposted by Patient-Led Research Collaborative
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...
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
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...
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...
Reposted by Patient-Led Research Collaborative
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...
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
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...
Here are the words she left behind:
www.instagram.com/p/DREMDNBjnq...
Reposted by Patient-Led Research Collaborative
‘Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, & full of love.’
—Alice Wong
—Alice Wong
November 15, 2025 at 6:12 AM
‘Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, & full of love.’
—Alice Wong
—Alice Wong
NEW PAPER: A patient-engaged study reveals significant gaps in Brazil's universal health system (SUS) for people with #LongCovid. Co-authored by @patientled.bsky.social researchers, the study followed patients up to 2 years after COVID hospitalization.
🧵 1/11
🧵 1/11
November 12, 2025 at 7:19 PM
NEW PAPER: A patient-engaged study reveals significant gaps in Brazil's universal health system (SUS) for people with #LongCovid. Co-authored by @patientled.bsky.social researchers, the study followed patients up to 2 years after COVID hospitalization.
🧵 1/11
🧵 1/11
Reposted by Patient-Led Research Collaborative
Participants are now enrolling in our #longCovid randomized, controlled trial of tirzepatide. The largest trial to test a treatment for this condition. Home-based—no sites. In today's @sandiegouniontribune.com
www.sandiegouniontribune.com/2025/11/01/c...
www.sandiegouniontribune.com/2025/11/01/c...
November 1, 2025 at 2:16 PM
Participants are now enrolling in our #longCovid randomized, controlled trial of tirzepatide. The largest trial to test a treatment for this condition. Home-based—no sites. In today's @sandiegouniontribune.com
www.sandiegouniontribune.com/2025/11/01/c...
www.sandiegouniontribune.com/2025/11/01/c...
Reposted by Patient-Led Research Collaborative
The paper is available to read at: www.thelancet.com/journals/lan...
Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease
Long COVID is an umbrella term for the heterogeneous long-term consequences of SARS-CoV-2
infection. It encompasses a wide spectrum of phenotypes (sometimes overlapping), and
its underlying mechanisms...
www.thelancet.com
November 8, 2025 at 12:08 AM
The paper is available to read at: www.thelancet.com/journals/lan...
Reposted by Patient-Led Research Collaborative
Thanks to my wonderful collaborator Lara Goxhaj, and to the entire author team @lisamccorkell.bsky.social, @fvrhijn.bsky.social,
@leticiasaurus.bsky.social, and @julialmv.bsky.social. And thanks to @michaelpelusomd.bsky.social for comments on an early draft. (12/12)
@leticiasaurus.bsky.social, and @julialmv.bsky.social. And thanks to @michaelpelusomd.bsky.social for comments on an early draft. (12/12)
November 8, 2025 at 12:08 AM
Thanks to my wonderful collaborator Lara Goxhaj, and to the entire author team @lisamccorkell.bsky.social, @fvrhijn.bsky.social,
@leticiasaurus.bsky.social, and @julialmv.bsky.social. And thanks to @michaelpelusomd.bsky.social for comments on an early draft. (12/12)
@leticiasaurus.bsky.social, and @julialmv.bsky.social. And thanks to @michaelpelusomd.bsky.social for comments on an early draft. (12/12)
Reposted by Patient-Led Research Collaborative
We conclude that the creation of a set of questionnaires, in partnership with regulators and in deep dialogue with the community of people with Long COVID should be a priority in the field. (11/12)
November 8, 2025 at 12:08 AM
We conclude that the creation of a set of questionnaires, in partnership with regulators and in deep dialogue with the community of people with Long COVID should be a priority in the field. (11/12)
Reposted by Patient-Led Research Collaborative
Some options already exist but none of them evaluates all of the following concretely and comprehensively: PEM-induced functional impairment, dysautonomia, food and environmental sensitivities, cardiovascular dysfunction, and neurological dysfunction. (10/12)
November 8, 2025 at 12:08 AM
Some options already exist but none of them evaluates all of the following concretely and comprehensively: PEM-induced functional impairment, dysautonomia, food and environmental sensitivities, cardiovascular dysfunction, and neurological dysfunction. (10/12)
Reposted by Patient-Led Research Collaborative
Moreover, many people with Long COVID do not meet the diagnostic criteria for ME.
We need a set of questionnaires (to supplement non-questionnaire measures) that can assess disease severity across all
phenotypes. (9/12)
We need a set of questionnaires (to supplement non-questionnaire measures) that can assess disease severity across all
phenotypes. (9/12)
November 8, 2025 at 12:08 AM
Moreover, many people with Long COVID do not meet the diagnostic criteria for ME.
We need a set of questionnaires (to supplement non-questionnaire measures) that can assess disease severity across all
phenotypes. (9/12)
We need a set of questionnaires (to supplement non-questionnaire measures) that can assess disease severity across all
phenotypes. (9/12)
Reposted by Patient-Led Research Collaborative
We recommend urgent research on whether the FUNCAP can serve as the
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)
November 8, 2025 at 12:08 AM
We recommend urgent research on whether the FUNCAP can serve as the
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)
Reposted by Patient-Led Research Collaborative
The FUNCAP questionnaire, designed with extensive patient involvement, measures with concrete benchmarks the severity of functional impairment across a number of relevant dimensions (physical, cognitive, sensory, orthostatic). (7/12)
www.funcap.no
www.funcap.no
Home - funcap.no
FUNCAP is used to assess functional capacity in patients with diseases where post exertional symptom exacerbation (PEM, PENE, PESE) is present
www.funcap.no
November 8, 2025 at 12:08 AM
The FUNCAP questionnaire, designed with extensive patient involvement, measures with concrete benchmarks the severity of functional impairment across a number of relevant dimensions (physical, cognitive, sensory, orthostatic). (7/12)
www.funcap.no
www.funcap.no
Reposted by Patient-Led Research Collaborative
But there are two problems with this:
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)
November 8, 2025 at 12:08 AM
But there are two problems with this:
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)
Reposted by Patient-Led Research Collaborative
One well-defined Long COVID
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)
November 8, 2025 at 12:08 AM
One well-defined Long COVID
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)
Reposted by Patient-Led Research Collaborative
So, which questionnaire should we use in Long COVID trials? This is a very tricky question because Long COVID is highly heterogenous: it can present in a lot of different ways. So, we need a set of questionnaires that can cover all presentations. (4/12)
November 8, 2025 at 12:08 AM
So, which questionnaire should we use in Long COVID trials? This is a very tricky question because Long COVID is highly heterogenous: it can present in a lot of different ways. So, we need a set of questionnaires that can cover all presentations. (4/12)
Reposted by Patient-Led Research Collaborative
In Long COVID, outcome measures are almost always questionnaires. But if questionnaires don't ask the right questions, someone might improve a lot from the drug but this might not be picked up by the questionnaire. (3/12)
November 8, 2025 at 12:08 AM
In Long COVID, outcome measures are almost always questionnaires. But if questionnaires don't ask the right questions, someone might improve a lot from the drug but this might not be picked up by the questionnaire. (3/12)
Reposted by Patient-Led Research Collaborative
A number of highly anticipated Long COVID trials have recently reported negative results: see their phenotypic eligibility criteria and the outcome measures used in the table below. (2/12)
November 8, 2025 at 12:08 AM
A number of highly anticipated Long COVID trials have recently reported negative results: see their phenotypic eligibility criteria and the outcome measures used in the table below. (2/12)
Reposted by Patient-Led Research Collaborative
Many Long COVID trials have reported negative results in 2024 and 2025. In our Comment for @thelancetinfdis.bsky.social we argue that inadequate outcome measures might have played a role. (1/12)
November 8, 2025 at 12:08 AM
Many Long COVID trials have reported negative results in 2024 and 2025. In our Comment for @thelancetinfdis.bsky.social we argue that inadequate outcome measures might have played a role. (1/12)
Reposted by Patient-Led Research Collaborative
The Lancet, Infectious Disease: 'Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease'
By Lisa McCorkell, Femke van Rhijn-Brouwerb, Letícia Soares, Julia Moore Vogel, Lara Goxhaj, Chloé de Canson
www.thelancet.com/journals/lan...
By Lisa McCorkell, Femke van Rhijn-Brouwerb, Letícia Soares, Julia Moore Vogel, Lara Goxhaj, Chloé de Canson
www.thelancet.com/journals/lan...
Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease
Long COVID is an umbrella term for the heterogeneous long-term consequences of SARS-CoV-2
infection. It encompasses a wide spectrum of phenotypes (sometimes overlapping), and
its underlying mechanisms...
www.thelancet.com
November 8, 2025 at 4:18 PM
The Lancet, Infectious Disease: 'Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease'
By Lisa McCorkell, Femke van Rhijn-Brouwerb, Letícia Soares, Julia Moore Vogel, Lara Goxhaj, Chloé de Canson
www.thelancet.com/journals/lan...
By Lisa McCorkell, Femke van Rhijn-Brouwerb, Letícia Soares, Julia Moore Vogel, Lara Goxhaj, Chloé de Canson
www.thelancet.com/journals/lan...
Reposted by Patient-Led Research Collaborative
I was a (paid) test user for this trial and am thrilled w/the accommodations it makes to include people as severely ill as I am!
If you’re in the US and have Long Covid, check it out and share w/friends!
Also: if you don’t see your state yet, you can sign up to be alerted when yours is added!
If you’re in the US and have Long Covid, check it out and share w/friends!
Also: if you don’t see your state yet, you can sign up to be alerted when yours is added!
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is officially open for enrollment for people with Long COVID in:
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
LoCITT-T - Long COVID Treatment Trial
longcovid.scripps.edu
October 30, 2025 at 6:50 PM
I was a (paid) test user for this trial and am thrilled w/the accommodations it makes to include people as severely ill as I am!
If you’re in the US and have Long Covid, check it out and share w/friends!
Also: if you don’t see your state yet, you can sign up to be alerted when yours is added!
If you’re in the US and have Long Covid, check it out and share w/friends!
Also: if you don’t see your state yet, you can sign up to be alerted when yours is added!