RECOVER-VITAL Screening Visit Set

Posted by Bsquared @barbarabell, Apr 18 9:34am

I have my initial visit for the RECOVER-VITAL Paxlovid study at UNC set for 4/29/2024 and then receive medication a week later. I am so excited to be in this study. I will provide updates.

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Please do. I was going to do a study where I live, but decided against it.

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Yes! Good luck and do keep us posted. There was another member of this group that was taking part in the Yale Paxlovid study. I wonder how they are going?

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I’m puzzled as to why the results never seem to get published. I believe the Stanford study was over a year ago. I thought the study was for a fifteen day trial of Paxlovid. Seems like it shouldn’t take over a year to analyze.
People are suffering.

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Here’s some information on RECOVER-VITAL: https://classic.clinicaltrials.gov/ct2/show/NCT05595369

You can see that they are using a huge approximate population of 900. The study is not due to finish until 2025. Stanford and UNC are just two locations across the country that are part of the study. Stanford may be finished with their portion of the total population of the study, but UNC is just starting and, most likely, other locations are in different phases. Once the entire population has completely the study, they still must analyze the results and publish in a peer-reviewed journal.
As far as the schedule, here is what my individual schedule is at UNC. First, the screening visit where they determine which of their pre-defined symptom group categories you for into and gather all your information. A week later, you are given your first dose. Over 25 days, you are given medication. A month after that, you have your final visit.
People are suffering. I’m suffering. You’re suffering. We all are. But, a large, diverse population of LC patients will produce the most statistically meaningful results and be the most beneficial. This takes time.

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@dloos

I’m puzzled as to why the results never seem to get published. I believe the Stanford study was over a year ago. I thought the study was for a fifteen day trial of Paxlovid. Seems like it shouldn’t take over a year to analyze.
People are suffering.

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Stanford Paxlovid trial shutdown quickly with no explanation so no results likely. Yale study keeps pushing out results release date.
UIC downtown Chicago has started a Paxlovid trial, and Endeavor suburban Chicago area is restarting their trial.

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Okay, sure. I get it.

But I must say, it reminds me of the AIDS epidemic that took so long to get anything focused on helping people.
A lot of people died while waiting. And, it seems to me that a lot was learned about antivirals for AIDS. Seems some of that could be helpful for Covid 19 virus.

I’m just a suffering idiot though.

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I don’t think that Stanford trial was part of RECOVER-VITAL since trials didn’t even start until August 2023 and the small Stanford study shut down well before that. RECOVER is NIH funded and I think whatever Stanford was doing was not. Having said that, Stanford is holding NIH funded RECOVER trials and is still enrolling. These are not Paxlovid trials but a different part of the RECOVER initiative. Yale is also not doing NIH funded RECOVER-VITAL (Paxlovid) trials that I can find.

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@dloos

Okay, sure. I get it.

But I must say, it reminds me of the AIDS epidemic that took so long to get anything focused on helping people.
A lot of people died while waiting. And, it seems to me that a lot was learned about antivirals for AIDS. Seems some of that could be helpful for Covid 19 virus.

I’m just a suffering idiot though.

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Let me correct…Stanford is not part of the NIH-funded Paxlovid study. According to @froggiiii above, Stanford was doing a trial that shut down. True, but not NIH funded (not sure what their deal was). RECOVER-VITAL Paxlovid trials didn’t start until after that. If you are interested in seeing if there is a clinical trial near you: https://trials.recovercovid.org/

I remember the AIDS epidemic very well; I remember reading the first article in Rolling Stone when it was called GRID. I see similarities. President Ronald Reagan denied all federal funding for AIDS research because it was ‘gay’. Nobody cared and there was no funding…until it started to show up in the non-gay population and they still didn’t care that much. Now, federal funding for LC is starting to bubble up pretty significantly, but remember the majority of LC patients are women. It only took about three years (heavy sarcasm here) to be taken seriously. If the majority of LC sufferers were straight, white men, there would already be a treatment and extensive study. Am I the only one to have been pretty definitively diagnosed at one time as ‘hysterical woman who needs Prozac’? Think a man would have been diagnosed that way?
Whew! I still have so much anger!

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@barbarabell

Let me correct…Stanford is not part of the NIH-funded Paxlovid study. According to @froggiiii above, Stanford was doing a trial that shut down. True, but not NIH funded (not sure what their deal was). RECOVER-VITAL Paxlovid trials didn’t start until after that. If you are interested in seeing if there is a clinical trial near you: https://trials.recovercovid.org/

I remember the AIDS epidemic very well; I remember reading the first article in Rolling Stone when it was called GRID. I see similarities. President Ronald Reagan denied all federal funding for AIDS research because it was ‘gay’. Nobody cared and there was no funding…until it started to show up in the non-gay population and they still didn’t care that much. Now, federal funding for LC is starting to bubble up pretty significantly, but remember the majority of LC patients are women. It only took about three years (heavy sarcasm here) to be taken seriously. If the majority of LC sufferers were straight, white men, there would already be a treatment and extensive study. Am I the only one to have been pretty definitively diagnosed at one time as ‘hysterical woman who needs Prozac’? Think a man would have been diagnosed that way?
Whew! I still have so much anger!

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Bsquared,
As you can tell, I am angry too.
I remember all that you say about AIDS.

I have been offered SSRI almost exclusively for my LC symptoms.
I finally have doctors who take me seriously, but it took me two years and a long wait to get seen by this group.
They haven’t found answers for me, but they treat me with respect and TRY to help.

Sometimes I think it’s my anger that has kept me going this long!

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@dloos

Okay, sure. I get it.

But I must say, it reminds me of the AIDS epidemic that took so long to get anything focused on helping people.
A lot of people died while waiting. And, it seems to me that a lot was learned about antivirals for AIDS. Seems some of that could be helpful for Covid 19 virus.

I’m just a suffering idiot though.

Jump to this post

You are not an idiot.
Remember, somebody has to initiate a study, obtain funding, set up protocols, recruit and screen participants, etc etc. AIDS started in the early eighties and it was a leading cause of death until 1995, when it became a chronic treatable condition. By the way, there is another study coming up for another drug, baricitinib: https://classic.clinicaltrials.gov/ct2/show/NCT05858515

https://www.healthrising.org/blog/2024/01/19/ely-long-covid-chronic-fatigue-baricitinib/

I’d like to get in on that one too.

I am so sorry that you are suffering. I know exactly how you feel.

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