Thread by @TaraFotiPhD

#HHSLongCovid launching a consortium on Long COVID.

RFK: Open a dialogue with frontline physicians, assess efficacy of their innovative therapeutics, find biomarkers, narrow constellation of symptoms to clearly define long COVID, and hear from patients about what is working.

Will be doing a similar roundtable next month on Lyne disease, per RFK.

“We’ve spent 1.5 billion dollars with essentially nothing to show for it.”

“The good news is that the severity of long covid is associated with the duration and severity of COVID infection, which is thankfully decreasing.” (??)

@NIHDirector_Jay “I don’t want to wait for a perfect diagnostic test…” over the coughs of the guy next to him.

@NIHDirector_Jay “There are a lot of things out there on the shelf” that are useful and helpful.

“It’s going to be very hard unless you listen to patients… utilize your medical education and come up with different pathways.”

@NIHDirector_Jay Just want to note it is *very* difficult to hear the intros and the name tags are only slightly visible for people facing the camera.

Only one person is masked - a patient with long covid who has started a foundation.

@NIHDirector_Jay @PutrinoLab reporting they have seen over 500 patients in the Cohen center and they recently released their provider manual.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Discussing addressing cognitive dysfunction in LC patients. Repurposed drugs - miraviroc, rapamycin…

Not returning blood to heart and lungs because of poor integrity of the veins. Using pelvic stents in iliac veins.

Reactivated viruses.

Very complex disease.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Difference in patients with post-mRNA injury and post COVID infection. Post-mRNA are not improving over time while LC patients can improve, even without interventions.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Patients have been told there’s nothing wrong with them - that is incorrect.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Q about pelvic congestion syndrome.

POTS-like symptoms, feel better in water, takes an hour+ to get moving in the morning.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Patients bearing other patient stories can help them identify what is going on, especially when most clinicians aren’t well-informed on this condition.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 @NIHDirector_Jay mentioning listening session with RECOVER-TLC. There is a lot to study - how to we prioritize what to focus on? Patients can help with this.

Discussing the 4 RECOVER-TLC interventions: Baracitinib, LDN, GLP-1, stellare ganglion blocks.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 @PutrinoLab mentioning their studies (without NIH funding). Bench to bedside takes, on average, 17 years. Need new partnerships for monoclonal antibodies, vaccine injury, etc. through public-private partnerships.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Patients currently paying out of pocket for interventions. Not accessible for most.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 @NIHDirector_Jay We absolutely need to be faster, more agile. There are some government mechanisms for these public-private partnerships.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Patient advocate from UT wrote a state bill on stem cells and would love to do so on a federal level.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Physicians are unaware, even within their specialties, of many manifestations and possible interventions for LC.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 It’s so hard to hear. There is a lot of feedback over @PutrinoLab. Something about training clinicians with their new manual.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Patients have been told they’re crazy, there is nothing physically wrong.

We’re starting to put symptoms in buckets. Gets providers to first base, at least.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 Website is coming to scale this information up to a national level. CTO of HHS is listening and working on that. We are all listening and learning a lot, thanks to @SecKennedy for convening.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 @SecKennedy @PutrinoLab talking about immune dysregulation. Significant portion testing positive for tick-borne pathogen, reactivated from Covid spike protein (that happened to me!!), susceptible to mold injury and other toxins.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 @SecKennedy Inter current respiratory illness and patients will get much sicker than expected.

Benefits from repurposed meds.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 @SecKennedy Caution about over-relying on symptom categories as underlying pathology may still be the same.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 @SecKennedy @DrBobRedfield51 would have been certain that there is no viral persistence, but is now completely convinced that there is and that this is critical to address.

@NIHDirector_Jay @PutrinoLab @DrBobRedfield51 @SecKennedy Half hour break then session on innovation.