Patient-Led Research Collaborative
@patientled.bsky.social
Patient-Led Research for #LongCovid! http://patientledresearch.com
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!
Reposted by Patient-Led Research Collaborative
2 things I forgot to mention in this lengthy thread:
1. We are hosting a webinar on 11/5 @ 2 eastern / 11 pacific where we will share more info & answer questions. Register here:
scrippsresearch.zoom.us/webinar/regi...
2. The clinical trials . gov link is:
clinicaltrials.gov/study/NCT071...
1. We are hosting a webinar on 11/5 @ 2 eastern / 11 pacific where we will share more info & answer questions. Register here:
scrippsresearch.zoom.us/webinar/regi...
2. The clinical trials . gov link is:
clinicaltrials.gov/study/NCT071...
October 30, 2025 at 7:03 PM
2 things I forgot to mention in this lengthy thread:
1. We are hosting a webinar on 11/5 @ 2 eastern / 11 pacific where we will share more info & answer questions. Register here:
scrippsresearch.zoom.us/webinar/regi...
2. The clinical trials . gov link is:
clinicaltrials.gov/study/NCT071...
1. We are hosting a webinar on 11/5 @ 2 eastern / 11 pacific where we will share more info & answer questions. Register here:
scrippsresearch.zoom.us/webinar/regi...
2. The clinical trials . gov link is:
clinicaltrials.gov/study/NCT071...
Reposted by Patient-Led Research Collaborative
LoCITT-T is a 1,000-person double-blind, randomized, placebo-controlled trial.
This trial has been designed in partnership with patients (not just me!) throughout.
For example, most Long COVID clinical trials that have released results have not resulted in the improvement they hoped for...
2/16
This trial has been designed in partnership with patients (not just me!) throughout.
For example, most Long COVID clinical trials that have released results have not resulted in the improvement they hoped for...
2/16
October 30, 2025 at 6:24 PM
LoCITT-T is a 1,000-person double-blind, randomized, placebo-controlled trial.
This trial has been designed in partnership with patients (not just me!) throughout.
For example, most Long COVID clinical trials that have released results have not resulted in the improvement they hoped for...
2/16
This trial has been designed in partnership with patients (not just me!) throughout.
For example, most Long COVID clinical trials that have released results have not resulted in the improvement they hoped for...
2/16
Reposted by Patient-Led Research Collaborative
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 6:24 PM
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
Reposted by Patient-Led Research Collaborative
A new at home clinical trial for #LongCOVID launches today to test tirzepitide.
Co-lead @julialmv.bsky.social, argues in a new op-ed that decentralized trials will accelerate research and make clinical trials more accessible for people with Long COVID.
thesicktimes.org/2025/10/30/w...
Co-lead @julialmv.bsky.social, argues in a new op-ed that decentralized trials will accelerate research and make clinical trials more accessible for people with Long COVID.
thesicktimes.org/2025/10/30/w...
We need more at-home clinical trials for Long COVID. Here’s how we designed the largest one yet. - The Sick Times
We are now recruiting for the Long COVID Treatment Trial-Tirzepatide (LoCITT-T), which participants can complete entirely from bed.
thesicktimes.org
October 30, 2025 at 6:37 PM
A new at home clinical trial for #LongCOVID launches today to test tirzepitide.
Co-lead @julialmv.bsky.social, argues in a new op-ed that decentralized trials will accelerate research and make clinical trials more accessible for people with Long COVID.
thesicktimes.org/2025/10/30/w...
Co-lead @julialmv.bsky.social, argues in a new op-ed that decentralized trials will accelerate research and make clinical trials more accessible for people with Long COVID.
thesicktimes.org/2025/10/30/w...
After 3 years of work, we’re so excited to release a new study by PLRC in collaboration with Long COVID India on #LongCOVID healthcare access in India!
This research combines patient & healthcare provider perspectives to examine barriers to care: india.patientledresearch.com 1/
This research combines patient & healthcare provider perspectives to examine barriers to care: india.patientledresearch.com 1/
October 3, 2025 at 8:58 PM
After 3 years of work, we’re so excited to release a new study by PLRC in collaboration with Long COVID India on #LongCOVID healthcare access in India!
This research combines patient & healthcare provider perspectives to examine barriers to care: india.patientledresearch.com 1/
This research combines patient & healthcare provider perspectives to examine barriers to care: india.patientledresearch.com 1/
Reposted by Patient-Led Research Collaborative
#NEISvoid find of the day!
A collective of people with Long Covid have made a spoken word album of poetry and music, and the proceeds go to @patientled.bsky.social Patient-Led Research Collaborative!
So cool! Check it out: www.playitforward.com/projects/voi...
A collective of people with Long Covid have made a spoken word album of poetry and music, and the proceeds go to @patientled.bsky.social Patient-Led Research Collaborative!
So cool! Check it out: www.playitforward.com/projects/voi...
September 23, 2025 at 4:42 PM
#NEISvoid find of the day!
A collective of people with Long Covid have made a spoken word album of poetry and music, and the proceeds go to @patientled.bsky.social Patient-Led Research Collaborative!
So cool! Check it out: www.playitforward.com/projects/voi...
A collective of people with Long Covid have made a spoken word album of poetry and music, and the proceeds go to @patientled.bsky.social Patient-Led Research Collaborative!
So cool! Check it out: www.playitforward.com/projects/voi...
Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with #LongCovid for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input!
Find a trial site near you:
addresslongcovid.com/sites/
Find a trial site near you:
addresslongcovid.com/sites/
Study Sites | Address: Long COVID Clinical Study | BioVie Pharma
Study Sites near you! Learn more about participating in a clinical study of a Trial Drug to treat neurological symptoms of Long COVID.
addresslongcovid.com
September 19, 2025 at 6:51 PM
Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with #LongCovid for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input!
Find a trial site near you:
addresslongcovid.com/sites/
Find a trial site near you:
addresslongcovid.com/sites/
Great @thesicktimes.org article on 3 upcoming #LongCovid trials on JAK inhibitors. PLRC did patient engagement and helped shape 1 of the 3 here, REVERSE-LC (baricitinib) led by @weselymd.bsky.social — who also used our scorecards for patient engagement! thesicktimes.org/2025/08/05/t...
Three clinical trials for Long COVID are testing JAK inhibitors to treat immune dysregulation - The Sick Times
Three separate trials are testing the immunomodulator drugs abrocitinib (Cibinqo), baricitinib (Olumiant), and upadacitinib (Rinvoq). All are JAK inhibitors, which target specific inflammation pathway...
thesicktimes.org
September 17, 2025 at 8:25 PM
Great @thesicktimes.org article on 3 upcoming #LongCovid trials on JAK inhibitors. PLRC did patient engagement and helped shape 1 of the 3 here, REVERSE-LC (baricitinib) led by @weselymd.bsky.social — who also used our scorecards for patient engagement! thesicktimes.org/2025/08/05/t...