Thanks for your update at the end of TWIV where you mention you were on a call about long covid research. Three months have passed since my omicron infection and my long covid symptoms have not subsided despite being fully vaccinated and boosted. From my perspective I just don’t understand why big pharma doesn’t have a single clinical trial for a drug like antivirals to treat long covid. Why hasn’t the NIH or CDC developed a diagnostic test for persistent virus, microclots or autoantibodies? So many of us are stuck with no treatments and no clinical marker to support a diagnosis.
Love the clinical updates.
I was wondering why the current recommendations are to only give EITHER paxlovid or Mab instead of giving both.
Just curious, sees like there is a 10% progression rate with either … why not get disease progression down to 1%?
Kevin Maloy, MD
I was just listening to clinical update 889.
I’m a pediatric urgent care clinician in NY/CT.
A couple of points/questions:
1-based on my experience with my daughter and husband having a year of severe long covid symptoms, I whole-heartedly disagree with the idea we should Not use Paxlovid (assuming there is plenty of supply) to treat and prevent long covid. I am certain we are breeding loss of confidence in medicine by showing such a deaf ear to those suffering with long covid and saying ‘wait for the data’.
This is a desperate situation. I am caring for kids with a year+ of severe fatigue, memory loss and regression, etc.
(FYI -Mt Sinai long covid clinic recommended 6-12 mos of aspirin, and I have reviewed the studies on aspirin. I don’t think it tells us Not to use for long covid.)
2-clinically, I am seeing at least a 30-40% false neg rate with rapid testing.
I have many families, all symptomatic, where only 1,2 or 3 out of 5 people test pos. Or where a pt gets tested (with symptoms) and only tests pos (on rapid and/or pcr) after 3-4 consecutive negative tests.
Sure, I think some inaccurate testing can be user error, but most seems to be an over reliance and over-selling by everyone to the public on how accurate these tests are. There is such a push to ‘get back to normal’ we want to believe the tests are inflable, and this is far from true.
3-So far with B2 I’m seeing a longer lag in transmission than w Omicron. Post exposure I’m seeing a wider window, like 2-7 days, than with omicron which seemed more like 2-3 days, I’m curious what others are seeing.
Thanks for all the updates.
-Abby Siegel MD