Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
Joined November 2020
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22 Aug 2024
We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID!
Strong, high-impact trials are critical & most current ones are insufficient. The paper gives guidance on treatments, outcomes, design, participant inclusion, & more.
sciencedirect.com/science/ar… 1/
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Jun 12
Another study shows cerebral hypometabolism in #LongCovid patients with PEM.
Cerebral hypometabolism is a decrease in the brain's ability to turn glucose into energy, leading to a severe cellular energy deficit.
journals.sagepub.com/doi/ful…
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Jun 12
For medical information, general AI frontier models (Google, OpenAI, Anthropic) outperformed specialized @EvidenceOpen and @UpToDate as assessed by 12 US clinicians, randomized and blinded to which model and extensive testing/benchmarks. This was not anticipated. @NatureMedicine
nature.com/articles/s41591-0…
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I talk about cardiopulmonary exercise testing (CPET) on here because it has emerged as important to understand #MECFS and #ME-like conditions. Not everyone is a CPET nerd like me. Now up on my @Substack: how #CPET is interpreted for non-researchers and non-clinicians. 🔗👇👇👇
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How gum disease bacteria lead to formation of amyloid plaque in the brain.
👇👇👇
Association Between Porphyromonas gingivalis and Alzheimer’s Disease: A Comprehensive Review
Sarmiento et al 2025
pmc.ncbi.nlm.nih.gov/article…
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Jun 12
This starts in 25 min!
May 29
Join RTHM, Patient-Led Research Collaborative (PLRC), Dr. Zachary Spiritos, and Dr. Binita Kane on June 12 at 9:30 a.m. PST // 12:30 p.m. EST // 5:30 p.m. GMT 1 for a live discussion on the new Long COVID Treatment Guide.
The Long COVID Treatment Guide was created by PLRC and RTHM to spark meaningful conversations between patients and clinicians about treatment options that can be considered as part of a personalized care plan. It includes 24 prescription medications, along with a limited number of supplements, over-the-counter medications, procedures, and lifestyle strategies.
Our panelists will discuss why this guide was created and how to best use it to explore treatment options available today while clinical trials are ongoing.
Panelists include:
Binita Kane, MD @BinitaKane
Zachary Spiritos, MD, MPH
Charlie McCone @loscharlos
Jennifer Curtin, MD @jencurtinmd
Register here: us06web.zoom.us/j/8738963156…
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Jun 9
Dr. Tim Henrich presented new findings surrounding long term persistence of SARS-CoV-2 proteins & RNA in Long COVID gut tissue at PolyBio’s recent Spring symposium. “We actually see [gut viral persistence] in both areas, the epithelium—which turns over every several days to week—to the lamina propria where you have long-lived myeloid immune cells… suggesting there may even be replication in some individuals,” said Henrich.
Using a highly sensitive method of detecting viral RNA, “around 20-25% of the time, we see detection… all the way up until 3-4 years after initial infection” in Long COVID patients.
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This is really exciting!
From @ThosVarley :
"... aberrant eATP signaling is thought to underlie many chronic and developmental illnesses, including things like ME/CFS and post-acute infectious syndromes. This might be giving us a first look at the "network level" changes induced by the CDR.
(Paging @RenegadeRes)"
New paper with @DoctorJosh @drmichaellevin and co-first author @pai_vaibhav! If you're interested in emergence, multicellularity, and information processing in living systems, this one is for you. (Link below). 1/N
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Jun 9
Emory University, 38 participants. Single cell profiling found Long COVID immune cells act as if they keep seeing antigen.
B cells stayed activated, T cells showed exhaustion, and NK cells became dysfunctional, supporting persistent immune stimulation.
biorxiv.org/content/10.64898…
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Jun 10
Don’t forget to leave your comments on Long COVID!
FDA is extending the comment period for the Request for Information on Drug Repurposing for Unmet Medical Needs by 30 days — now open until July 11, 2026! federalregister.gov/d/2026-1…
Plus, join us for a hybrid public workshop on drug repurposing on August 5 that will cover public docket comments & approaches for prioritizing and selecting repurposing candidates. Stay tuned for registration details. reaganudall.org/news-and-eve…
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Jun 11
Tomorrow, join Dr. Zachary Spiritos, Dr. Binita Kane, Patient-Led Research Collaborative (@patientled), and RTHM for a live discussion on the new Long COVID Treatment Guide.
Date: Friday, June 12
Time: 9:30 a.m. PST / / 12:30 p.m. EST / / 5:30 p.m. GMT 1
Our panelists will discuss why this guide was created and how to best use it to explore treatment options available today while clinical trials are ongoing.
🔗: us06web.zoom.us/j/8738963156…
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Jun 8
New: #LongCovid patients have alterations to the choroid plexus and reduced cerebral blood flow.
The alterations were associated with Alzheimer's markers, including GFAP and p-tau217.
alz-journals.onlinelibrary.w… 1/
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RT @ahandvanish: Study looking at COVID variants through 2024 finds essentially 2 types:
1) Respiratory: replicates more efficiently in br…
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We are looking for patients (or caregivers) who can read & translate Thai, Indonesian, or Arabic for an upcoming research project.
If that's you, please email us at team@patientledresearch.com! #LongCovid
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New paper in @TheLancet ft. PLRC member Dr. Megan Fitzgerald:
"In this paper, a group of bioethicists, clinician-scientists and people.. with #LongCovid argue that it is ethically imperative to conduct trials of disease-modifying treatments for LC now." 🧵thelancet.com/journals/eclin…
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Children with Long COVID had measurable retinal microvascular changes. buff.ly/fPSg320
In 74 kids ages 7–17, scans found wider arterioles, wider venules, and a higher A/V ratio, consistent with endothelial dysfunction.
The eye may help track pediatric Long COVID.
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Jun 6
Such good work by @VirusesImmunity and team:
"When they exposed the IgG antibodies from the long-COVID patients to nervous system tissues, they found that it attacked parts of the brain, thalamus, meninges, endocrine tissues, nervous system proteins ..."
healthrising.org/blog/2026/0…
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"Because research budgets are limited, it is ethically imperative to optimize the scientific and social value of funded research. In our view, a pivot to more, well-designed, trials of disease-modifying treatments for #LongCovid follows from this imperative"
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"Testing more disease-modifying treatments can have major scientific and social value at this time. Positive results from small, proof-of-concept trials can provide the rationale to conduct larger trials and attract much needed private investment in #LongCovid. Positive results..
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.. from large, randomized trials might support regulatory licensure. Negative results can reveal unforeseen safety issues. In some cases, even negative studies can help identify subgroups of patients"
Full paper: thelancet.com/journals/eclin…
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"While the pathophysiology of #LongCovid remains incompletely understood, the knowledge gained has helped identify possible disease-modifying treatment targets, including several types of immunomodulatory, neurological, antiviral and other drugs"
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