← Return to NIH RECOVER + FOIA = “they bungled it” I can’t speak to the veracity

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@dloos

This is all so discouraging. I read the attachment from Sicktimes. I fear we will all die with long Covid, perhaps not FROM long Covid. According to all my testing, I am a healthy person. But of course, I am NOT healthy.

We do not have the proper tests, or the proper treatments. My doctors cannot even prescribe anything for relief of my many symptoms. I am an invalid now, relying on my family to care for me.
I am grateful that I have their support, but my government has let me down.

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Replies to "This is all so discouraging. I read the attachment from Sicktimes. I fear we will all..."

Thanks. I literally got home from a RECOVER appointment- pulmonary function test and chest CT. I “triggered” these tests and am grateful for the chest CT. I started with RECOVER out of University of Illinois Chicago 2 1/2 years ago. My lungs were normal. Last year there was a nodule and other crap. I’ll find out soon where I’m at with it all.

I caught Covid a second time and was given paxlovid. It cleared up the second infection and greatly reduced my long Covid from my first infection. I’ve still gone downhill. I found another RECOVER site and pick up my paxlovid (or placebo) to test 15 or 30 days of treatment to hypothetically kill off lingering virus.

There’s not too many options for me. The RECOVER people at the sites are passionate, educated, and kind, in my experience. The clinical person I met with today said RECOVER has been slow, and recruitment and progress have been slow. These are the people who know it’s slow because they were given plans that haven’t materialized.

If true, I hate that the Mayo bio bank isn’t fully utilized. I have literally sent them crap to analyze.

Funny how Pfizer was one of the original vaccinations and now they’re making money on paxlovid. The way the NIH, universities, etc is dependent on grants and federal funding.

An excellent neurologist at Northwestern University put me on dementia/parkinsons/brain injury meds two years ago. He said there’s no science for him to say whether I should stay on it or adjust dosage. He said no follow-up is needed until science moves forward. He’s the real deal- he put me into a ton of tests and he likes loud rock concerts. Yet he’s returning his focus to Alzheimer’s since there’s not much he can do for long Covid