Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!

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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Patient-Led Research Collaborative retweeted
RECOVER-TLC posted the list of biomarkers it will use for its next round of #LongCovid trials. Thoughts: -This is 81 biomarkers, not 82 (IL-8 = CXCL8 iirc?) -Criteria of >3 months is insufficient; many markers are still abnormal then. Criteria should've been 18 months min. 1/
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"There’s a long, dark history here, rooted in centuries of dismissal of predominantly female illnesses as “hysterical”, and amplified in recent decades by government attempts to reduce the benefits bill and insurers’ attempts to reduce payouts." theguardian.com/commentisfre…
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Patient-Led Research Collaborative retweeted
📢 Our paper is published in Oxford Open Immunology: The @ERASE_LC evaluated whether a 5-day course of intravenous remdesivir is feasible, safe, and acceptable for people living with Long COVID. This is the first study to specifically examine remdesivir as a treatment for LC.
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Patient-Led Research Collaborative retweeted
Presentation on bezisterim #LongCovid clinical trial now out: “These results are shocking to me in the best possible way… this is really the most promising data that I have seen in this field” — @MichaelPelusoMD
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#InnovationInn update: It's been 46 days since purposeful over-exertion as part of our @renegaderes Innovation Inn PEM project. It took weeks to recover, but I think I can finally make the call that I'm back to the baseline I was at before the over-exertion. (Fortunately, even the travel the past week didn't set me back.)
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Patient-Led Research Collaborative retweeted
PLRC member @julialmv was just featured in @SmithsonianMag — discussing her journey as a 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/innovatio…
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Patient-Led Research Collaborative retweeted
Nearly one in 6 Americans ages 16 to 29 is neither working nor studying, and that share has been rising. We want your help to understand why. If you’re a young adult who falls into this category, or know someone who is, we want to hear from you ⤵️ wapo.st/4AnH8R4
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Patient-Led Research Collaborative retweeted
A brilliant new @Nature synthesis of what we know about Alzheimer's disease pathogenesis, which is non-linear, with discrete phases (Figure), and notable inflection and transition points. Also helps to explain why symptoms do not correlate with underlying pathology. nature.com/articles/s41586-0…
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Patient-Led Research Collaborative retweeted
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/
Today, we announced positive results from our Phase 2 signal finding ADDRESS-LC trial evalulating bezisterim for the treatment of neurological symptoms associated with Long COVID. Read: investors.bioviepharma.com/n… $BIVI
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Patient-Led Research Collaborative retweeted
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 retweeted
This is a great example of what happens when trialists like @BioVie_Pharma 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 retweeted
We're thrilled to see positive results from @BioVie_Pharma's clinical trial on bezisterim in #LongCovid! The drug benefited patients with high levels of fatigue, PEM &/or cognitive impairment, with multiple significant & trending results, including objective cognitive tests. 1/
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Patient-Led Research Collaborative retweeted
Today, we announced positive results from our Phase 2 signal finding ADDRESS-LC trial evalulating bezisterim for the treatment of neurological symptoms associated with Long COVID. Read: investors.bioviepharma.com/n… $BIVI
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We're thrilled to see positive results from @BioVie_Pharma's clinical trial on bezisterim in #LongCovid! The drug benefited patients with high levels of fatigue, PEM &/or cognitive impairment, with multiple significant & trending results, including objective cognitive tests. 1/
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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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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/
Today, we announced positive results from our Phase 2 signal finding ADDRESS-LC trial evalulating bezisterim for the treatment of neurological symptoms associated with Long COVID. Read: investors.bioviepharma.com/n… $BIVI
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