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loscharlos

@loscharlos.bsky.social
7.2K followers 214 following 132 posts

😎🌁🎷 #LongCovid March 2020 😵‍💫

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Reposted by loscharlos
Patient-Led Research Collaborative @patientled.bsky.social · 19h
"In addition, teachers’ unions should advocate for more teachers living with #LongCovid to receive all necessary accommodations and supports to continue to serve as educators, including being able to teach part-time." journals.sagepub.com/doi/10.1177/...
journals.sagepub.com
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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Reposted by loscharlos
Patient-Led Research Collaborative @patientled.bsky.social · 19h
"We encourage schools to invest in interventions that will have public health benefits with minimal educational consequences. We particularly highlight air purification and ventilation as highly effective in reducing risk of infection."
journals.sagepub.com
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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Reposted by loscharlos
Patient-Led Research Collaborative @patientled.bsky.social · 19h
"Teachers are over-represented among people living with #LongCovid... In a nationwide USA sample from 2022, 9.5% of currently employed elementary and secondary teachers reported having Long COVID."
journals.sagepub.com
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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Reposted by loscharlos
Patient-Led Research Collaborative @patientled.bsky.social · 19h
A new publication is out from PLRC member Dr. Alison Cohen of UCSF! "We encourage state legislatures to pass legislation that requires all schools to make changes to their infrastructure to support cleaner air to protect students & teachers." #LongCovid
journals.sagepub.com
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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Reposted by loscharlos
Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026
“Having the capability to help the community, I feel a moral obligation to use my skills for that purpose, because I feel like there’s reason for hope. And I want other people to know that—to feel that hope.” — @julialmv.bsky.social
smithsonianmag.com
For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief
Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers
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Reposted by loscharlos
Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026
"Organizations like... PLRC have been essential in raising awareness about #LongCovid and in advancing research into the disease... so that scientists can more clearly define the disease by clarifying its pathology and identify biomarkers"
smithsonianmag.com
For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief
Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers
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Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026
"Since those early days... we have gained a much clearer picture of the condition... PLRC and other like-minded groups have outlined more than 200 associated symptoms, including... memory issues and post-exertional malaise, a uniquely punishing impairment" #LongCovid
smithsonianmag.com
For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief
Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers
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Reposted by loscharlos
Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026
PLRC member @julialmv.bsky.social was just featured in @smithsonianmag.bsky.social — discussing her journey as a #LongCovid patient advocate and her work with PLRC. "The paper that collaboration yielded... has since been viewed online two million times, and it has been cited 4,000 times"
smithsonianmag.com
For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief
Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers
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Reposted by loscharlos
Billy Hanlon @bhanlon15.bsky.social · 10/09/2026
National Geographic: 'Why Do POTS and Long Covid Look So Much Like Autoimmune Disorders?' 'Researchers are studying the curious connection between autoimmune diseases and conditions like POTS and long COVID...' By Rachel Fairbank www.nationalgeographic.com/health/artic...
nationalgeographic.com
Why Do POTS and Long Covid Look So Much Like Autoimmune Disorders?
Researchers are studying the curious connection between autoimmune diseases and conditions like POTS and long COVID—in the hopes it might lead to more targeted treatments.
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BioVie Inc @biovie.bsky.social · 15/09/2026
Today, we announced positive results from our Phase 2 signal finding ADDRESS-LC trial evalulating bezisterim for the treatment of neurological symptoms associated with #LongCOVID. Read: investors.bioviepharma.com/news/news-de...
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
This is an incredibly exciting development for the #LongCovid field, and shows what is possible when trials choose innovative treatment candidates and are designed with patient expertise! 7/ bsky.app/profile/biov...
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
PLRC assisted on the advisory panel, study design, and recruitment and communication for this trial, and the patient engagement in the process was outstanding. The trial completed enrollment in less than a year. 6/
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
Patient feedback also led to the trial allowing patients to stay on existing medications such as LDN and reimbursed enrollees for travel and lodging. 5/
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
The trial included 22 outcome measures, and chose ideal endpoints based on feedback from patient reps. This included endpoints that appropriately pick up on the types of cognitive dysfunction found in #LongCovid, and that captured PEM. 4/
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
Because of this, the majority were ill for over 2-3 years - representing the patients most in need of treatment! 3/
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
This is a great example of what happens when trialists like @biovie.bsky.social listen to patients. Based on feedback from patient-researchers at PLRC & other orgs, the trial changed eligibility criteria for illness duration from a 2 year cap to include patients sick for longer. 2/
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
We're thrilled to see positive results from @biovie.bsky.social's clinical trial on bezisterim in #LongCovid! The drug benefited patients with high levels of fatigue, PEM and/or cognitive impairment, with multiple significant and trending results, including objective cognitive tests. 1/
The summary “forest chart” chart shows only those endpoints that reach statistically significant or are trending, and the charts for all endpoints can be found in the full data announcement presentation that was discussed during BioVie's conference call.
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Ezra S @ezra.zone · 15/09/2026
Big news in the Long COVID world: "In pre-specified subgroup analyses...patients with greater baseline burden on one or more symptoms (approximately 78% of trial participants) demonstrated statistically significant improvements on multiple clinically coherent endpoints."
investors.bioviepharma.com
BioVie Announces Topline Results from Phase 2 ADDRESS‑LC Trial Evaluating Bezisterim for the Treatment of Neurological Symptoms Associated with Long COVID
Statistically significant benefits observed in bezisterim-treated Long COVID patients in pre-specified subgroups with high baseline fatigue, cognitive impairment, and/or post‑exertional malaise Bezist...
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Patient-Led Research Collaborative @patientled.bsky.social · 25/08/2026
"This suggests that hearing directly from the people behind the trial and having questions answered is an important component of trial recruitment, even in remote trials." 4/ Read the full paper here: www.thelancet.com/journals/lan...
thelancet.com
Rapid recruitment for a remote long COVID clinical trial
There have been few long COVID clinical trials relative to the burden of disease,1 and even fewer have been accessible to people with more severe illness.2 As a person who has had moderate-to-severe l...
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Patient-Led Research Collaborative @patientled.bsky.social · 25/08/2026
"Another interesting aspect of this recruitment process is that we saw the biggest leap in enrollment not when the study was first announced, but after we hosted a webinar that included a live question and answer session." 3/
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Patient-Led Research Collaborative @patientled.bsky.social · 25/08/2026
Most trials this size take 1-3 years to complete recruitment! If other #LongCovid clinical trials can learn from this, it could transform the the timeline to which an approved treatment arrives. 2/
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Patient-Led Research Collaborative @patientled.bsky.social · 25/08/2026
PLRC member @julialmv.bsky.social published a piece in @thelancetinfdis.bsky.social highlighting how quickly her team completed recruitment for the LoCITT-T clinical trial. They recruited 1,000 people in less than two months — a feat many other trialists doubted was possible. 1/
Screenshot of The Lancet Infectious Disease article titled "Rapid recruitment for a remote long COVID clinical trial" by Julia Moore Vogel.
Graph with text below that reads, "Figure Long COVID Treatment Trial Tirzepatide daily enrolment"
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C.H. Romatowski @chromatowski.bsky.social · 20/08/2026
To help! Check this list of Senate subcommittee members—constituents in these states can especially make a difference. To make your engagement go even farther, consider reaching out specifically to the health staffer for your Senator. If you need help finding that person, lmk! #MECFS #LongCovid
appropriations.senate.gov
Labor, Health and Human Services, Education, and Related Agencies | United States Senate Committee on Appropriations
United States Senate Committee on Appropriations
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Wilhelmina Jenkins @wilhelminaj.bsky.social · 19/08/2026
Great article from The Sick Times on the efforts to include ME/CFS & Long COVID in the 2027 Congressional appropriations.
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The Sick Times @thesicktimes.org · 19/08/2026
Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the coming weeks. Read more from @betsyladyzhets.bsky.social: thesicktimes.org/2026/08/18/c...
ID: MEAction advocates demonstrate outside of the Capital building in Washington D.C. on a sunny, spring day. They wear red t-shirts that read "millions missing" and "SOS" as well as high quality masks. One is in a wheel chair, while another sits on a stool. They hold signs that say, "Millions Missing, SOS, 2025, MEAction" that have an illustration of the statue of liberty. The text reads, “The Sick Times. Congress’s 2027 budget could include new funding for Long COVID and ME. By Betsy Ladyzhets. Reporting.” Key points you should know:

Congress is legally required to pass a federal budget every year. The budget process, called appropriations, can be an opportunity to secure new research funding more quickly than specific, standalone bills.
 
Advocates are pushing for the fiscal year 2027 budget to include $50 million for the ME/CFS Research Roadmap, a detailed plan to advance ME research from the National Institutes of Health (NIH).
 
Some 2027 budget proposals include opportunities for new Long COVID and infection-associated chronic condition (IACC) funding across the NIH, other health agencies, and the Department of Defense.
 
Advocates are focusing on contacting senators, as Senate offices are still drafting appropriations bills in the next few weeks while the House versions of these bills are already written.
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Patient-Led Research Collaborative @patientled.bsky.social · 17/08/2026
Overall, the study identifies haptoglobin phenotype as a promising biomarker capable of stratifying #LongCovid patients into biologically distinct subgroups. Read Paper: www.mdpi.com/1422-0067/27... 4/
mdpi.com
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Reposted by loscharlos
Patient-Led Research Collaborative @patientled.bsky.social · 17/08/2026
These cognitive differences were accompanied by reduced cerebral oxygen extraction & metabolic alterations consistent with a less efficient adaptation to increased energy demands imposed by exertion, thereby providing objective biological evidence supporting patients' experience of "brain fog" 3/
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Patient-Led Research Collaborative @patientled.bsky.social · 17/08/2026
They found that individuals carrying the Hp2 allele, particularly those with the Hp2-2 phenotype, experienced more severe fatigue, poorer physical function, greater PEM, and worse cognitive performance than individuals with the Hp1-1 phenotype, who appeared comparatively resilient. 2/
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Patient-Led Research Collaborative @patientled.bsky.social · 17/08/2026
A new PLRC-funded study is out from Dr. Moreau & team! They studied whether inherited haptoglobin phenotypes—a genetic trait that determines how efficiently the body clears free hemoglobin & protects tissues from oxidative stress—could explain part of the variability of severity in #LongCovid 1/
mdpi.com
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s. e. smith @sesmith.lol · 18/08/2026
Letting your kids get horrendously sick/develop lifelong chronic health problems/or simply die from preventable illnesses to own the libs.
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Patient-Led Research Collaborative @patientled.bsky.social · 14/08/2026
Authors main conclusion: physical activity alone cannot explain the reduced exercise capacity and skeletal muscle abnormalities in #LongCovid and #MECFS. 5/ Read the full paper here: www.nature.com/articles/s41...
nature.com
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications
Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...
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Patient-Led Research Collaborative @patientled.bsky.social · 14/08/2026
They also found signs of impaired energy production in muscles of people with #LongCovid and #MECFS. In ME/CFS they additional observed fewer muscle capillaries, which may limit oxygen delivery during exercise. 4/
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Patient-Led Research Collaborative @patientled.bsky.social · 14/08/2026
In addition, both patient groups had fewer slow twitch muscle fibers, which are important for endurance, and relatively more fast-twitch fibers, which fatigue more quickly. This did not occur after bed rest. 3/
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Patient-Led Research Collaborative @patientled.bsky.social · 14/08/2026
After bed rest healthy participants showed substantial and rapid muscle loss, and this pattern was not observed in people with #LongCovid and #MECFS. 2/
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Patient-Led Research Collaborative @patientled.bsky.social · 14/08/2026
A new PLRC-funded study is out from Dr. Rob Wüst and team! The study compared people with #LongCovid and #MECFS to healthy individuals who underwent 60 days of strict bed rest, and the underlying changes were clearly different. 1/ Read: www.nature.com/articles/s41...
nature.com
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications
Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...
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Patient-Led Research Collaborative @patientled.bsky.social · 05/08/2026
Donate: patientresearchcovid19.com/donate/
Your support will help us get The Long COVID Treatment Guide into the hands of the clinicians and patients looking for answers.

Will you make a contribution to help us reach 100,000 people by the end of the summer?
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Patient-Led Research Collaborative @patientled.bsky.social · 05/08/2026
"In our medical education work with clinicians, we understood that the greatest barriers are a lack of awareness about available treatment options, and a comprehensive resource to refer to. We recognized the need for a guide tailored for clinicians with limited time and for patients with limited energy and cognitive impairment."
— Charlie McCone, PLRC co-lead
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Patient-Led Research Collaborative @patientled.bsky.social · 05/08/2026
"As someone living with Long COVID, I know first hand the power of finding relief. I found two off-label meds in this guide that took me from bed-bound to mostly housebound, which gave me the will to keep living and fighting for better care for patients. I believe we all have the right to try these medications as I did, and your support makes that potential possible."
— Charlie McCone, PLRC co-lead
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Patient-Led Research Collaborative @patientled.bsky.social · 05/08/2026
Three months since its release, the Treatment Guide has already reached 50,000 people!

This work is supplemental to our focus on advancing clinical trials — working towards FDA-approved medications to treat Long COVID. However, for the millions of patients suffering now, we believe the current evidence base is robust enough to warrant off-label access today and they shouldn’t have to wait years to receive the care they need.
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Patient-Led Research Collaborative @patientled.bsky.social · 05/08/2026
Earlier this year PLRC released the Long COVID Treatment Guide to help patients discuss potential treatment options with their clinicians. This was developed over the course of a year in collaboration with RTHM Clinic; the treatment guide includes 24 prescription medications, as well as a handful of other procedures and supplements.
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Patient-Led Research Collaborative @patientled.bsky.social · 05/08/2026
PLRC is wrapping up our summer fundraiser and want to thank everyone who has supported so far! There's still time to give. Your support helps us continue addressing the #LongCovid questions patients care most about. Donate: patientresearchcovid19.com/donate/
Your support helped 50,000 people
access treatment information
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Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026
Donate: patientresearchcovid19.com/donate/
We remain committed to developing patient-led research that can support Long COVID clinical trials in the long run. With your support, we'll continue to address the questions patients care about.

Will you make a contribution so we can finish these three critical projects?
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Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026
"PLRC was born from a community of people driven to transform their lived experiences with non-recovery from COVID-19 into data to propel the once nascent field of Long COVID research.
Over the years, PLRC continued to carry on patient-led research that applies unique integration
of lived-experience knowledge and expertise."
— Letícia Soares, PLRC co-lead
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Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026
"We hold unique datasets, collected by patients, from patients, on questions patients care about and believe could offer real insight into the disease. PLRC members have developed studies addressing research questions of high priority to people with Long COVID, from first characterization of symptoms and reproductive health issues, to health outcomes associated with reinfections and patient phenotyping."
— Letícia Soares, PLRC co-lead
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Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026
3. Analyzing patient-designed registry data:

Why:
Little is known about the long-term prognosis of Long COVID, but recovery rates are reportedly low. Even less is known about rates of relapse after a phase of remission, which is critical considering SARS-CoV-2 reinfections and the relapse-remission nature of Long COVID.

What:
The goal of this study is to track Long COVID status over time to determine rates of remission and relapse, and understand the factors associated with recovery, remission and relapses.

Impact:
This will allows us to study and characterize factors associated with relapses and remissions, and variation in functional capacity
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Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026
2. Evaluation of a Patient-Led Research Funding (PLRF) Model.

Why:
Through PLRF, patients with scientific backgrounds and experience living with Long COVID directed nearly $5 million in donor-provided funds to support 10 biomedical studies. This resulted in major advances in the field, including the first monoclonal antibody clinical trial in Long COVID and a study describing amyloid microclots in the skeletal muscle during PEM.

What:
We are assessing the experiences of researchers who were awarded by the fund and patients who participated in the PLRF to learn from the success of this funding model.

Impact:
By treating the PLRF as a successful model for how patients can participate in decisions about funding, we hope to promote patient decision-making in research funding.
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Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026
1. Mapping research needs in myalgic encephalomyelitis prodrome disease.

Why:
The prodrome is a phase of non-specific signs and symptoms lasting months to years before diagnostic criteria are met.
ME prodrome characterization has been seldom documented, including in Long COVID.

What:
Our patient-led review aims to map existing characterizations, research gaps, and healthcare implications of the ME prodrome.

Impact:
Understanding the myalgic encephalomyelitis (ME) prodrome could improve clinical and self-management and help prevent functional decline.
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Patient-Led Research Collaborative @patientled.bsky.social · 29/07/2026
PLRC is continuing our summer fundraiser to help sustain our work and fund new projects that will improve clinical trials and biomarkers! You can help us by donating, sharing our posts, & forwarding emails you receive to folks in your network 🧵 Donate: patientresearchcovid19.com/donate/
Three Research Projects PLRC Can Finish With Your Help.
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Patient-Led Research Collaborative @patientled.bsky.social · 20/07/2026
Donate: patientresearchcovid19.com/donate/
We know how difficult it is to remain hopeful, but we believe the next few years will show massive leaps in these areas.

Will you make a contribution so we can keep pushing research for clinical trials and biomarkers forward together?
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Patient-Led Research Collaborative @patientled.bsky.social · 20/07/2026
"In addition to these projects, we will continue our ongoing clinical trial and treatment work — including collaborating with the FDA/CURE-ID to identify which already-approved, repurposed drugs help (or don’t help) people with Long Covid, and continuing to advise organizations running clinical trials, including RECOVER-TLC, to strengthen their trial design and treatment selections."
— Hannah Davis, PLRC co-lead
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