Julia MV
@julialmv
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Senior Program Director @ScrippsRTI & #LongCovid patient-researcher @patientled Let's improve health equity Accessibility is my love language Views are mine
NY
Joined January 2014
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is now open for enrollment for people with Long COVID in all states but Hawaii (shipping timelines), DC, and PR: https://t.co/K7yjhCfV3N
longcovid.scripps.edu
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is officially open for enrollment for people with Long COVID in: Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah https://t.co/K7yjhCfV3N 1/16
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Reminder - the Long COVID Treatment Trial - Tirzepatide (LoCITT-T) is open in 49 US states (all but Hawaii), DC, & PR. More info & eligibility survey here: https://t.co/K7yjhCfnef We're hosting a webinar with Q&A on 11/5, register here: https://t.co/yGdX7xmLxY
scrippsresearch.zoom.us
If you or someone you know is living with Long COVID, you understand how difficult it can be, that there are no FDA-approved treatments. The Long COVID Treatment Trial (LoCITT), a portfolio of Long...
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If you have brain fog & fatigue attributed to a COVID infection, the ADDRESS-LC clinical trial for Bezisterim is still enrolling! And enrollment is now open to people living with #LongCovid for over 2 years! There are 19+ trial sites across the US:
addresslongcovid.com
Study Sites near you! Learn more about participating in a clinical study of a Trial Drug to treat neurological symptoms of Long COVID.
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We desperately need trials to be remote, to collect data on housebound and bedbound people. Nobody understands this better than people with Long COVID and @julialmv’s trial looks absolutely amazing https://t.co/9ffOvoqGhG
thesicktimes.org
We are now recruiting for the Long COVID Treatment Trial-Tirzepatide (LoCITT-T), which participants can complete entirely from bed.
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San Diego Union-Tribune: "Can a weight loss and diabetes drug treat long COVID?" 'New Scripps Research trial will explore the effects of Lilly's GLP-1 drug on reducing the symptoms of the debilitating disease' https://t.co/1tXfyTGKsf
sandiegouniontribune.com
New Scripps Research trial will explore the effects of Lilly’s GLP-1 drug on reducing the symptoms of the debilitating disease.
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To learn more, register for our webinar on 11/5: https://t.co/yGdX7xnjnw Read the op-ed I wrote about this study & the need for at-home trials in The Sick TImes: https://t.co/8JQ2f3kvTq Read our press release: https://t.co/tAviO79Dix grateful & hopeful, JMV 16/16
thesicktimes.org
We are now recruiting for the Long COVID Treatment Trial-Tirzepatide (LoCITT-T), which participants can complete entirely from bed.
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my wonderful colleagues who conquered all the setbacks we encountered (especially @EricTopol who I am co-leading the trial with), our knowledgeable data safety monitoring board members, & most of all the participants who decide to spend their precious energy on this trial. 15/16
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I want to thank so many: Every patient-researcher who came before me, everyone who helped me learn about LC and other IACCs, our collaborators, (especially the Schmidt Initiative for LC who provided study funding & @EliLillyandCo who is providing study drug) 14/16
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The faster we enroll 1,000 participants, the faster we can share results. Please consider sharing this, especially people with LC who are less likely to hear about it online. It is crucial to represent the breadth LC, especially across demographics & illness severities. 13/16
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We have been working with @careevolution to create a platform for digital clinical trials that allows participants across the US to participate from wherever they are. There are many drugs we would like to test & we are pursuing the funding to support more trials. 12/16
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We expect there to be varied responses within people with Long COVID and have aimed to power the trial accordingly by enrolling a large number of participants & asking a lot of questions that will allow us to analyze subgroups of participants. 11/16
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It’s important to me that we make the trial as accessible as possible, to include people who have not been invited to participate in the past whether that’s due to their race, location, and/or illness severity. 10/16
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even if it doesn’t, we will learn about how it affects LC, side effects, & more about how to operate a nationwide, remote trial, helping people with LC administer an injectable drug. While I don’t expect this to cure Long COVID, I hope it decreases suffering. 9/16
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Recent studies on GLP-1 drugs & anecdotal reports, have been promising. An RCT is needed to generate high-quality data describing its effects in this population and move toward insurance coverage. While I hope the trial demonstrates that tirzepatide decreases fatigue... 8/16
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Also this trial was restricted to Long COVID, but if it is successful, we will aim to expand to other infection-associated chronic conditions, including ME. 7/16
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For example, we will add more states as soon as we can. If you’re interested and live in another state in the US, please sign up for the waitlist. We’ll reach out to you when your state is open for enrollment: https://t.co/h0V6sMgraz 6/16
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... by having people who require this accommodation test the experience. It has taken a lot to get to this point, with difficult tradeoffs along the way. I am confident we’ve done our best within our constraints, & that we’ll improve as we learn from participants. 5/16
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while including secondary endpoints (like FUNCAP & step count from wearables) that we expect to be more sensitive & will learn more about. We’ve made efforts to make the trial accessible to people who are unable to verbally speak due to the severity of their illness, 4/16
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they hoped for. Input from many people with lived experience about what endpoints are most sensitive helped us land on a primary endpoint (Fatigue Severity Scale) that was acceptable to FDA and is relatively sensitive... 3/16
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