Patient-Led Research Collaborative
@patientled.bsky.social
Patient-Led Research for #LongCovid! http://patientledresearch.com
Check out the paper: equityhealthj.biomedcentral.com/articles/10....
Support @patientled.bsky.social: patientresearchcovid19.com/donate/
11/11
Support @patientled.bsky.social: patientresearchcovid19.com/donate/
11/11
Healthcare gaps and inequities following hospitalisation for COVID-19 in Brazil’s universal healthcare system: a patient-engaged survey of Long COVID healthcare needs, use and barriers - International...
Background Long COVID (LC) is an infection-associated chronic condition (IACC) that tends to be neglected by healthcare systems. Studies of post-COVID healthcare utilisation find elevated levels of us...
equityhealthj.biomedcentral.com
November 12, 2025 at 7:19 PM
Check out the paper: equityhealthj.biomedcentral.com/articles/10....
Support @patientled.bsky.social: patientresearchcovid19.com/donate/
11/11
Support @patientled.bsky.social: patientresearchcovid19.com/donate/
11/11
**Our call to action:**
#LongCovid is a chronic condition the Brazilian universal health system isn't ready for. We need:
• Healthcare professional training
• Clear care pathways & coordination
• Investment in LC services within SUS
• Equity-focused policies
10/11
#LongCovid is a chronic condition the Brazilian universal health system isn't ready for. We need:
• Healthcare professional training
• Clear care pathways & coordination
• Investment in LC services within SUS
• Equity-focused policies
10/11
November 12, 2025 at 7:19 PM
**Our call to action:**
#LongCovid is a chronic condition the Brazilian universal health system isn't ready for. We need:
• Healthcare professional training
• Clear care pathways & coordination
• Investment in LC services within SUS
• Equity-focused policies
10/11
#LongCovid is a chronic condition the Brazilian universal health system isn't ready for. We need:
• Healthcare professional training
• Clear care pathways & coordination
• Investment in LC services within SUS
• Equity-focused policies
10/11
**Who needed care the most?**
➊ Those with more #LongCovid symptoms & those with ICU stays.
➋ Working-age adults (30-59 yrs).
➌ Cis women had lower odds of *using* specialized care than cis men, despite reporting need. A clear gender inequity.
9/11
➊ Those with more #LongCovid symptoms & those with ICU stays.
➋ Working-age adults (30-59 yrs).
➌ Cis women had lower odds of *using* specialized care than cis men, despite reporting need. A clear gender inequity.
9/11
November 12, 2025 at 7:19 PM
**Who needed care the most?**
➊ Those with more #LongCovid symptoms & those with ICU stays.
➋ Working-age adults (30-59 yrs).
➌ Cis women had lower odds of *using* specialized care than cis men, despite reporting need. A clear gender inequity.
9/11
➊ Those with more #LongCovid symptoms & those with ICU stays.
➋ Working-age adults (30-59 yrs).
➌ Cis women had lower odds of *using* specialized care than cis men, despite reporting need. A clear gender inequity.
9/11
**Barriers deepen inequality:**
➊ People with income ≥R$1500 (min. monthly wage) were 3.5x more likely to access specialized care.
➋ Half of all patients needing care faced out-of-pocket expenses, mainly for meds, specialists, and exams.
8/11
➊ People with income ≥R$1500 (min. monthly wage) were 3.5x more likely to access specialized care.
➋ Half of all patients needing care faced out-of-pocket expenses, mainly for meds, specialists, and exams.
8/11
November 12, 2025 at 7:19 PM
**Barriers deepen inequality:**
➊ People with income ≥R$1500 (min. monthly wage) were 3.5x more likely to access specialized care.
➋ Half of all patients needing care faced out-of-pocket expenses, mainly for meds, specialists, and exams.
8/11
➊ People with income ≥R$1500 (min. monthly wage) were 3.5x more likely to access specialized care.
➋ Half of all patients needing care faced out-of-pocket expenses, mainly for meds, specialists, and exams.
8/11
**Why couldn't people get care?** Top barriers in the universal healthcare system:
⏳ Long waiting times
📞 Inability to schedule appointments
💊 Medicines not available
💸 Financial costs
These barriers are deepening existing inequalities.
7/11
⏳ Long waiting times
📞 Inability to schedule appointments
💊 Medicines not available
💸 Financial costs
These barriers are deepening existing inequalities.
7/11
November 12, 2025 at 7:19 PM
**Why couldn't people get care?** Top barriers in the universal healthcare system:
⏳ Long waiting times
📞 Inability to schedule appointments
💊 Medicines not available
💸 Financial costs
These barriers are deepening existing inequalities.
7/11
⏳ Long waiting times
📞 Inability to schedule appointments
💊 Medicines not available
💸 Financial costs
These barriers are deepening existing inequalities.
7/11
• Labwork: 73% needed | 92% used | 69% used in public system
• Scans/imaging: 62% needed | 84% used | 62% used in public system
• Mental Health: 23% needed | 57% used | 29% used in public system
• Rehabilitation: 17% needed | 52% used | 70% used in public system
6/11
• Scans/imaging: 62% needed | 84% used | 62% used in public system
• Mental Health: 23% needed | 57% used | 29% used in public system
• Rehabilitation: 17% needed | 52% used | 70% used in public system
6/11
November 12, 2025 at 7:19 PM
• Labwork: 73% needed | 92% used | 69% used in public system
• Scans/imaging: 62% needed | 84% used | 62% used in public system
• Mental Health: 23% needed | 57% used | 29% used in public system
• Rehabilitation: 17% needed | 52% used | 70% used in public system
6/11
• Scans/imaging: 62% needed | 84% used | 62% used in public system
• Mental Health: 23% needed | 57% used | 29% used in public system
• Rehabilitation: 17% needed | 52% used | 70% used in public system
6/11
**The Healthcare Access Gap**
There's a major disconnect between needing care and getting it *within the public system*:
• Specialist care: 76.5% needed | 82% used | 45% used in the public system
• Pharmacy: 76.5% needed | 90% used | 61.5%% used in the public system…
5/11
There's a major disconnect between needing care and getting it *within the public system*:
• Specialist care: 76.5% needed | 82% used | 45% used in the public system
• Pharmacy: 76.5% needed | 90% used | 61.5%% used in the public system…
5/11
November 12, 2025 at 7:19 PM
**The Healthcare Access Gap**
There's a major disconnect between needing care and getting it *within the public system*:
• Specialist care: 76.5% needed | 82% used | 45% used in the public system
• Pharmacy: 76.5% needed | 90% used | 61.5%% used in the public system…
5/11
There's a major disconnect between needing care and getting it *within the public system*:
• Specialist care: 76.5% needed | 82% used | 45% used in the public system
• Pharmacy: 76.5% needed | 90% used | 61.5%% used in the public system…
5/11
**The symptom burden is high.**
71.3% reported at least one #LongCovid symptom. The most common were:
• Fatigue (49%)
• Post-exertional malaise (46%)
• Joint pain (43%)
• Sleep & cognitive disturbances (~40%)
4/11
71.3% reported at least one #LongCovid symptom. The most common were:
• Fatigue (49%)
• Post-exertional malaise (46%)
• Joint pain (43%)
• Sleep & cognitive disturbances (~40%)
4/11
November 12, 2025 at 7:19 PM
**The symptom burden is high.**
71.3% reported at least one #LongCovid symptom. The most common were:
• Fatigue (49%)
• Post-exertional malaise (46%)
• Joint pain (43%)
• Sleep & cognitive disturbances (~40%)
4/11
71.3% reported at least one #LongCovid symptom. The most common were:
• Fatigue (49%)
• Post-exertional malaise (46%)
• Joint pain (43%)
• Sleep & cognitive disturbances (~40%)
4/11
**#LongCovid is an invisibilised epidemic:**
➊ 50% needed care for new/worsened conditions up to 2 years later.
➋ 39.3% self-identified as having Long COVID.
➌ Yet, only 8.4% received a formal diagnosis from a professional.
3/11
➊ 50% needed care for new/worsened conditions up to 2 years later.
➋ 39.3% self-identified as having Long COVID.
➌ Yet, only 8.4% received a formal diagnosis from a professional.
3/11
November 12, 2025 at 7:19 PM
**#LongCovid is an invisibilised epidemic:**
➊ 50% needed care for new/worsened conditions up to 2 years later.
➋ 39.3% self-identified as having Long COVID.
➌ Yet, only 8.4% received a formal diagnosis from a professional.
3/11
➊ 50% needed care for new/worsened conditions up to 2 years later.
➋ 39.3% self-identified as having Long COVID.
➌ Yet, only 8.4% received a formal diagnosis from a professional.
3/11
**How we did it:**
✅ Patient-researchers helped design the survey & interpret data.
✅ Included a racially & economically diverse sample, including those with severe disabilities.
✅ Mapped the "access gap" by asking about need for 10 services, then use & barriers.
2/11
✅ Patient-researchers helped design the survey & interpret data.
✅ Included a racially & economically diverse sample, including those with severe disabilities.
✅ Mapped the "access gap" by asking about need for 10 services, then use & barriers.
2/11
November 12, 2025 at 7:19 PM
**How we did it:**
✅ Patient-researchers helped design the survey & interpret data.
✅ Included a racially & economically diverse sample, including those with severe disabilities.
✅ Mapped the "access gap" by asking about need for 10 services, then use & barriers.
2/11
✅ Patient-researchers helped design the survey & interpret data.
✅ Included a racially & economically diverse sample, including those with severe disabilities.
✅ Mapped the "access gap" by asking about need for 10 services, then use & barriers.
2/11
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)