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Reposted by loscharlos

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

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

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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rthm_health @rthm.bsky.social · 6d

Big announcement 📣

RTHM’s new HIPAA-compliant intelligence platform brings your health story into focus, pulling together records, labs, diagnoses, and symptoms to transform complex data into clarity and suggest the best next steps with your care team!

Start today (it’s free!): rthm.com

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The Sick Times @thesicktimes.org · 6d

🩸Thrombotic events doubled since 2020, reinfections increase risk of Long COVID

👃 Olfactory dysfunction occurred in people after SARS-CoV-2 infection

🧘‍♂️ A behavioral trial is assessing a vague “mindfulness intervention” for Long COVID.

This week's #LongCOVID research: bit.ly/4mHhIpj

A scientific drawing shows a blood clot, with red blood cells trapped in a white fibrin mesh. The text reads, "The Sick Times. Long COVID research updates. A large study found thrombotic events doubled since 2020 and that reinfections increased the risk of Long COVID. A study found that olfactory dysfunction, or changes to sense of smell, occurred in people after SARS-CoV-2 infection. A behavioral trial is assessing a vague “mindfulness intervention” for Long COVID." Three slides follow with shortened versions of the text in this caption.

Researchers in Spain assessed over 190,000 participants, using data from a public health research network, in a study published in the journal Vaccines. They found that Long COVID prevalence was three to 10 times higher in individuals with three or more reported infections (about 600 people in the dataset) than in those with only one infection. They also found that the number of thrombotic events, including strokes and pulmonary embolisms, in people under 60 doubled from 2020 to 2024, in both people who were and weren’t vaccinated. The authors concluded that policymakers should prevent the spread of SARS-CoV-2 and that healthcare workers should continue wearing protective masks.

A new RECOVER study published in JAMA found that olfactory dysfunction, or changes to sense of smell, occurred in people after SARS-CoV-2 infection, even in those who didn’t report changes. The study included 3,525 participants and formally tested 40 different smells. Researchers found that 66% of previously-infected participants without self-reported change or loss also had olfactory dysfunction, and that dysfunction coincided with cognitive deficits. The authors wrote that their findings corroborated other studies that people underestimate their loss of smell following COVID-19.

A behavioral trial at Columbia University (LONG-CALM) is assessing a vague “mindfulness intervention” for Long COVID. The clinicaltrials.gov page states that participants will view a series of recorded “mindfulness sessions” which were “created by the study team” for eight weeks. The study aims to enroll 400 participants, who will also complete surveys about their symptoms. Mindfulness has been heavily criticized as a treatment for Long COVID by leading researchers and people with the disease. While it can help reduce stress, it has been weaponized against people with chronic illnesses and taken research funding away from trials assessing potential root causes, including immune dysregulation, viral persistence, reactivated viruses, and more.

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Chantzy @chantzy.bsky.social · 18d

Shout out to Jim O'Neill, new acting director of the CDC, for drawing attention to the alienation people with long COVID continue to face - from friends, family, partners, doctors, employers etc.

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loscharlos @loscharlos.bsky.social · 19d

Overall, I don’t think it has been a good strategy to only be willing to work with one party and if we’re not willing to work with folks like Todd Young (who clearly understand the issue), then I don’t understand the point of being involved in any of this.

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loscharlos @loscharlos.bsky.social · 19d

Of course there are many concerns, however I’m not sure that we have the luxury for conditions to be perfect for us to engage, and I definitely don’t recall them being anywhere near perfect in the last administration. And of course they need to follow through, but they’re now clearly on record.

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loscharlos @loscharlos.bsky.social · 19d

— also the fact that Senator Todd Young is clearly searching for the next practical step (& making things happen so far) feels like he’s invested in moving things along and finding answers for the loved ones in his life and constituents.

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loscharlos @loscharlos.bsky.social · 19d

Initial thoughts:

Discussion far exceeded my expectations: there was no deviation/question of focus on trials, mechanistic studies & pharmaceutical intervention — & fact they are talking to some of best researchers in field feels like a huge win (something that took very long in last admin)

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 20d

NEW: RFK Jr.'s HHS has committed to prioritizing Long COVID, but it's unclear if the agency will dedicate new funding to research and supports.

@mileswgriffis.bsky.social and I recap what we learned at today's roundtable event for @thesicktimes.org: thesicktimes.org/2025/09/18/k...

Kennedy’s HHS commits to Long COVID, but without clear funding - The Sick Times

Following two roundtable discussions with leading researchers and government officials — but limited patient engagement — HHS announced a public awareness campaign and medical resource platform

thesicktimes.org

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Andrea Is Sick of Long Covid @andreastudiescovid.bsky.social · 19d

Yes. We long haulers need the same kind of science that was done with HIV/AIDS. We need that now. Instead, the same mistakes are being made and people who've been sick for years already are losing hope (and muscle mass.)

loscharlos @loscharlos.bsky.social · 20d

Beautiful and succinct case made by @michaelpelusomd.bsky.social at the HHS #LongCovid roundtable on what needs and can be done to find the answers we need.

“I’m really here today to advocate for the importance of.. really scaling up our portfolio of clinical trials.”

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loscharlos @loscharlos.bsky.social · 20d

Beautiful and succinct case made by @michaelpelusomd.bsky.social at the HHS #LongCovid roundtable on what needs and can be done to find the answers we need.

“I’m really here today to advocate for the importance of.. really scaling up our portfolio of clinical trials.”

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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 21d

Just announced: HHS Secretary RFK Jr. is hosting two "roundtable discussions" about Long COVID tomorrow at 2 p.m. ET. @thesicktimes.org will be covering the event and reactions from the Long COVID community. (Reach out if you'd like to send us comments during or after!)

Screenshot of text:
MEDIA ADVISORY—FOR PLANNING PURPOSES ONLY

Livestream: Secretary Kennedy Convenes ‘Leading the Way on Long COVID’ Roundtables

WASHINGTON—SEPTEMBER 17, 2025— Health and Human Services Secretary Robert F. Kennedy, Jr. will lead two roundtable discussions to drive actionable steps against Long COVID in the United States — one focused on patient experiences and the other on research. The event underscores the Trump Administration’s commitment to confronting the “invisible illnesses” that affect millions of Americans.

WHO:

Health and Human Services Secretary Robert F. Kennedy, Jr.

FDA Commissioner Dr. Marty Makary

NIH Director Dr. Jay Bhattacharya

U.S. Senator Roger Marshall (R-KS)

U.S. Senator Todd Young (R-IN)

Congressman Jack Bergman (R-MI)

Additional patients, providers, medical professionals, and others researching, treating, and who have been affected by Long COVID.

WHEN:

Thursday, September 18 at 2 pm ET

WHERE:

The event is not open to the public but press and the public are invited to watch the event livestream on HHS.gov, X, YouTube, and Facebook.

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C.H. Romatowski @romatowski.bsky.social · 21d

NIH’s RECOVER study found vaccines reduce risk of kids getting a chronic illness from Covid by 61%, but only for the first six months—by 18 months protection was down to 11% “so getting the vaccine every year is important to prevent Long COVID.”

recovercovid.org/publications...

Dr. Lucky Tran @luckytran.com · 21d

Here are the first vaccine recommendations issued by the West Coast Health Alliance, which includes California, Washington, Oregon, and Hawaii:

Consensus WCHA 2025-2026 Respiratory Virus Season
Immunization Recommendations
Age/Condition COVID-19 Influenza RSV
Children • All 6-23 months
• All 2-18 years with risk fa tors
or never va inated against
COVID-19
• All who are in lose onta t with
others with risk fa tors1
• All who hoose prote tion1
• All 6 months and older • All younger than 8 months2
• All 8-19 months with risk fa tors
Pregnancy • All who are planning pregnan y,
pregnant, postpartum or
la tating
• All who are planning pregnan y,
pregnant, postpartum or
la tating
• 32-36 weeks gestational age2
Adults • All 65 years and older
• All younger than 65 years with
risk fa tors
• All who are in lose onta t with
others with risk fa tors
• All who hoose prote tion
• All • All 75 years and older
• All 50-74 years with risk fa tors
1. COVID-19 va ine is available for persons 6 months and older.
2. Prote t infants with either prenatal RSV va ine or infant dose of nirsevimab or lesrovimab.

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 28d

Michael Peluso’s team at UCSF is looking for pre-Covid #pwME in the SF Bay Area. I've heard great things about their Long Covid work and suspect this study will be fruitful!

Chronic Infections and Inflammation in ME/CFS

UCSF ME/CFS Study

UCSF is completing a study looking at immune markers in patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)

If you have been diagnosed with ME/CFS we could use your help!

We need volunteers who:
Have been diagnosed with ME/CFS
Are over 18 years old
Are willing to come for an in-person visit at our UCSF

If interested, please email CHIME@ucsf.edu to let us know! Include your first name, last name, and preferred contact information

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Julia MV @julialmv.bsky.social · 28d

Slides presented by Jason Liang at RECOVER-TLC day 2 showing the type of timeline I would have hoped to see given the level of funding available

Start to initial results in one year

PALM1 Ebola Treatment Trial

August 2018: Ebola outbreak in the DRC
Nov 2018: enrollment starts with Remdesivir, MAb113, Control
Jan 2019: protocol amended to add REGN-EB3
July 2019: protocol amended to increase sample size
Aug 2019: interim analysis led to recommendation to only keep MAb114 and REGN-EB3 arms

ACTT COVID-19 treatment trials
Stage 1: Feb 21, 2020 - May 8, 2020
Stage 2: May 8, 2020 - Aug 5, 2020
Stage 3: Aug 5, 2020 - Dec 20, 2020
Stage 4: Dec 20, 2020

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Julia Métraux @juliametraux.bsky.social · 29d

Biomedical research takes a longtime, so a personal grade of D to B- is good.

95% of rare diseases, for instance, have no treatment so I'm not surprised things are moving at the pace they are for Long Covid (doesn't mean in a perfect world they wouldn't move faster).

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 29d

NEW @thesicktimes.org: RECOVER-TLC announces new clinical trials, responses from the Long COVID community are mixed.

"Overall if [the first] round of trials was D grade, I’d put this in B- territory," said @loscharlos.bsky.social.
thesicktimes.org/2025/09/09/r...

RECOVER-TLC announces new Long COVID clinical trials, receives mixed reactions from patient community - The Sick Times

Some Long COVID advocates and researchers, including those who advised the National Institutes of Health’s initiative, say RECOVER-TLC isn’t living up to its promised ambition.

thesicktimes.org

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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 29d

Absolutely. I hope the story captures that people are glad to see differences between this round of trials and the prior ones, but there's still more room for improvement.

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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 29d

Breen did seem pretty confident that they can do more, but seemed unsure how many. Definitely worth highlighting that they do not have a full budget for these 4 trials yet.

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Julia MV @julialmv.bsky.social · 29d

With $300M, RECOVER-TLC reported being unsure whether they can fund more than the 4 trials announced today after a year of planning.

This is shockingly inefficient.

They should be able to run a platform with at least 10 trials.

Patients & taxpayers deserve more urgent & effective action.

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 29d

This story includes new info from today's RECOVER-TLC workshop and comments from NIAID's Joseph Breen.

The initiative has space in its $300 million allocation for additional trials, but the exact budget has not yet been determined, Breen said. thesicktimes.org/2025/09/09/r...

RECOVER-TLC announces new Long COVID clinical trials, receives mixed reactions from patient community - The Sick Times

Some Long COVID advocates and researchers, including those who advised the National Institutes of Health’s initiative, say RECOVER-TLC isn’t living up to its promised ambition.

thesicktimes.org

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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 29d

NEW @thesicktimes.org: RECOVER-TLC announces new clinical trials, responses from the Long COVID community are mixed.

"Overall if [the first] round of trials was D grade, I’d put this in B- territory," said @loscharlos.bsky.social.
thesicktimes.org/2025/09/09/r...

RECOVER-TLC announces new Long COVID clinical trials, receives mixed reactions from patient community - The Sick Times

Some Long COVID advocates and researchers, including those who advised the National Institutes of Health’s initiative, say RECOVER-TLC isn’t living up to its promised ambition.

thesicktimes.org

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