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Patient-Led Research Collaborative @patientled.bsky.social · 5d

We are so grateful to everyone who worked on this project:
Long Covid India, @patientled.bsky.social, @ginaassaf.bsky.social, Padma Priya, @herlifeinpixels.bsky.social, Sourya Dash, @leticiasaurus.bsky.social, Teresa Akintonwa, and Kathleen Banks! 12/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

Our report includes key recommendations: mandating #LongCOVID education in medical curricula & continuing ed, establishing Centers of Excellence for coordinated care & research, expanding insurance coverage & financial protection.

Read in full here: india.patientledresearch.com/recommendati...
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Patient-Led Research Collaborative @patientled.bsky.social · 5d

“People have so many unmet immediate needs (like tending to crops that will feed the family) which directly translate into socioeconomic precariousness with LC.

Many of the challenges are also the same in Brazil, like care coordination and lack of knowledgeable providers.” 10/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

From the team leads: “I really liked that the team was able to interview people with Long COVID from rural areas and underserved neighborhoods in urban centers.”

“We added insight from those in many different economical backgrounds and occupations, such as farmers.” 9/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

Long COVID patients face stigma, work-related challenges, and difficulties with family and social relationships.

#LongCovid disproportionately affects India’s productive-age population, pushing many into financial precarity or reliance on family support. 8/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

Gender bias against women exacerbates these challenges. Rural women’s mobility is further restricted by gendered control over finances and transportation, while urban working women report hiding symptoms due to workplace stigma. #LongCovid 7/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

Socioeconomic & geographic barriers hinder access to care. Rural & low-income patients disproportionately rely on underqualified providers and/or have to choose between buying medicine or food for their families. #LongCovid 6/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

Accessing healthcare is a major challenge. Providers often fail to diagnose #LongCOVID, & geographic disparities exacerbate challenges. Patients in rural areas must travel for care. LC clinics are short-lived & ineffective. Support groups & traditional medicine help fill gaps. 5/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

Our investigation revealed significant barriers to Long COVID care in India, highlighting systemic challenges that affect both patients and healthcare providers. Several major areas of concern stood out:

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

Our process includes qualitative interviews with patients, healthcare provider interviews, thematic analysis, community-engaged approach, and a local partnership framework. 3/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

PLRC has been committed to working on Long COVID research addressing Low & Middle Income Countries (LMICs) & other resource constrained settings.

This study follows several from our work in Brazil (patientresearchcovid19.com/publication/) & addresses a critical research gap in the field. 2/

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Patient-Led Research Collaborative @patientled.bsky.social · 5d

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/

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Reposted by Patient-Led Research Collaborative

C.H. Romatowski @chromatowski.bsky.social · 15d

#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...

Fundraiser: Voices from the Land of Long Covid

Drawing of a heart with a tree in the center and words like help, access, bed life and disability justice around it.

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Patient-Led Research Collaborative @patientled.bsky.social · 19d

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/

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

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Patient-Led Research Collaborative @patientled.bsky.social · 21d

“PLRC and other researchers from @meactnet.bsky.social and the National Academy of Medicine also helped early on with the trial. Based on PLRC’s scorecards to rate patient involvement, the study has a high degree of collaboration." #LongCovid 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

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Patient-Led Research Collaborative @patientled.bsky.social · 21d

“In December 2023, Jen began a two-month trial of the immunomodulating drug upadacitinib.. Jen.. had severe #MECFS for nearly two decades.. five weeks after stopping the treatment, she went into full remission." 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

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Patient-Led Research Collaborative @patientled.bsky.social · 21d

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

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Reposted by Patient-Led Research Collaborative

Andy Radde-Gallwitz ❌👑 @argphd.bsky.social · 26d

So well said.

Patient-Led Research Collaborative @patientled.bsky.social · Aug 19

Powerful closing remarks from PLRC co-founder @ahandvanish.bsky.social at the Keystone Symposia on #LongCovid last week, reflecting on the state of research and the journey of the patient community:

"In our immediate presence, time slows, while the world beyond speeds up, and moves without us”

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Reposted by Patient-Led Research Collaborative

C.H. Romatowski @chromatowski.bsky.social · Aug 20

Really cool news: this study has been expanded to include people whose LC started more than two years ago!

Check it out:

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Reposted by Patient-Led Research Collaborative

EurekaMSP @eurekamsp.bsky.social · Aug 19

This really got me. I think it’s hard to really understand if you haven’t experienced it. Excluding my job, I’ve lost 95% of the awesome life I built. First bit by bit, then suddenly all at once. And I’m better off than many. My path was H1N1-Giardia 🦫-Covid. I pushed thru til it came for my brain.

Patient-Led Research Collaborative @patientled.bsky.social · Aug 19

Powerful closing remarks from PLRC co-founder @ahandvanish.bsky.social at the Keystone Symposia on #LongCovid last week, reflecting on the state of research and the journey of the patient community:

"In our immediate presence, time slows, while the world beyond speeds up, and moves without us”

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Reposted by Patient-Led Research Collaborative

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · Aug 19

Today @thesicktimes.org: Takeaways from last week's @keystonesymposia.bsky.social Long COVID & IACC meeting.

Danny Altmann said in his closing remarks that the Long COVID field is “coming of age,” and this conference represents an important milestone.

By me and @mileswgriffis.bsky.social:

“The field is coming of age”: Long COVID researchers gather in Santa Fe to foster collaboration - The Sick Times

Last week, leading Long COVID and infection-association chronic condition (IACC) researchers met in Santa Fe, New Mexico, for the field’s second Keystone Symposia meeting. They were joined by advocates, clinicians, and representatives from pharmaceutical companies for a three-day conference focused on sharing new research and building consensus.

thesicktimes.org

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Reposted by Patient-Led Research Collaborative

Shannon Knight @shannonknight.bsky.social · Aug 19

If you struggle with listening or sound, every word Hannah says is printed across the bottom of the video--you can keep the sound off.

Patient-Led Research Collaborative @patientled.bsky.social · Aug 19

Powerful closing remarks from PLRC co-founder @ahandvanish.bsky.social at the Keystone Symposia on #LongCovid last week, reflecting on the state of research and the journey of the patient community:

"In our immediate presence, time slows, while the world beyond speeds up, and moves without us”

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Patient-Led Research Collaborative @patientled.bsky.social · Aug 19

Powerful closing remarks from PLRC co-founder @ahandvanish.bsky.social at the Keystone Symposia on #LongCovid last week, reflecting on the state of research and the journey of the patient community:

"In our immediate presence, time slows, while the world beyond speeds up, and moves without us”

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Reposted by Patient-Led Research Collaborative

The Sick Times @thesicktimes.org · Aug 19

In this episode of Still Here: A conversation between @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social comparing and contrasting #LongCOVID and ME clinical trial designs for drugs targeting immune dysregulation and viral persistence.

🎧 Listen now! bit.ly/3JgQFmZ

A black background with white text and lavender accents features an illustration of a white Caladrius wearing yellow headphones. The txt reads, "The Sick Times. Still Here."

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Reposted by Patient-Led Research Collaborative

loscharlos @loscharlos.bsky.social · Aug 15

Incredibly exciting diagnostic tool potential — @immunofever.bsky.social MIT team is doing nailfold capillaroscopies on #LongCovid patients before and after a NASA lean test, and said the results have been incredibly striking compared to controls.

My results were very abnormal !

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