Incredible visit Thursday to the opening of Mount Sinai’s Cohen Center for Recovery from Complex Chronic Illness, led by the renowned @PutrinoLab! #LongCovid 1/
The Center is incredible and truly blew me away - designed on so many levels with patients in mind, with top notch care, using many of the most advanced tools available 2/

Major paper! The team found that fibrinogen (which converts to fibrin):

-binds to spike
-forms clots + neuro issues
-acute stage fibrinogen = predictive biomarker of #LongCovid cog dysfunction!
-suppresses natural killer (NK) cells (which clear virus!)
1/nature.com/articles/s4158… The fibrin also:
-promotes neuroinflammation & neuronal loss post infection
-promotes innate immune activation in the brain & lungs independent of active infection
-downregulated JAK-STAT pathway & targets of p38 MAP kinase, pathways that regulate NK cell activation #LongCovid 2/

I've been doing #TheNicotineTest (via 7mg patches) for a month now & it has greatly improved my quality of life.

Major caveat: I'm on ivabradine. The nicotine increases heart rate, & I wouldn't recommend to anyone w POTS who isn't on beta-blockers or ivabradine. #LongCovid 1/ The biggest change is feeling like I have more *oxygen* circulating in my body - the weird altitude-sickness feeling is lessened.

Major improvements to cognition/awareness (esp executive functioning & processing), and improved physical capacity and overall baseline. 2/

From the Conference of Retroviruses & Opportunistic Infections: persistence of Covid in megakaryocytes in #LongCovid.

Over my head, but my understanding: megakaryocytes (type of bone marrow cell) being infected = continuous infection, very serious!

1/ croiconference.org/wp-content/upl…
This could cause additional impacts like deficits in platelet energy metabolism, or hormonal dysregulation (because platelets carry serotonin) #LongCovid

More about this here from the amazing @polybioRF!

2/polybio.org/projects/sars-…

Because this video has caused so much willful misinterpretation, I want to clarify: in the clip I’m countering the myth that #longcovid is lingering symptoms of acute COVID, since many people think it’s just a cough. I should‘ve said “acute COVID”; brain fogged & trying my best.

https://twitter.com/mildtin/status/1718454746313605137

The interview was an hour long & they edited it to 5 min. I talked their ear off about all hypotheses & the science behind each & it didn’t make it in - the piece was for a general audience. I talked about all the other things COVID can cause, include diabetes & clots, at length.

The most exciting hypotheses in #LongCovid and #pwME are ones that could have cures! This includes viral persistence and others, and also includes the itaconate shunt hypothesis. I'm going to tweet this video as I watch it to try to explain it more 1/

https://twitter.com/StenHelmfrid/status/1701291120741794172

Dr. Ron Davis used to work on the Human Genome Project but switched to ME/CFS when his son got sick. He's the director at the Stanford Genome Center. He is focused on *a cure* for ME/CFS. "I believe it is a curable disease." 2/

FDA Stakeholder meeting on #LongCovid today:

@TheCrankyQueer: highlight the need for trans inclusion in trials, including understanding how different labs may present; biomarker nuance

Oved Amitay: need to create a center of excellence to learn from trials in other diseases 1/ Oved: FDA needs to align on decisions across similar fields, needs cross-talk across similar groups

@Dysautonomia: Most even great researchers don't understand autonomic disorders, which happen in up to 2/3 of LC...is there an opportunity to offer autonomic training? 2/

A beautiful piece by @edyong209 that fully describes & communicates the complexity of fatigue & Post-Exertional Malaise in #LongCovid.

Ironically am crashy today so going to pull out amazing quotes:

"Now, at least, she can watch TV on the same day she takes a shower." 1/

https://twitter.com/edyong209/status/1684549672386576386

"Fatigue turns the most mundane of tasks into an “agonizing cost-benefit analysis,” @turnoftheshrew said. If you do laundry, how long will you need to rest to later make a meal? If you drink water, will you be able to reach the toilet?"

2/

This is one of the most accurate papers on #LongCovid recovery I've seen. It's full of crucial points:

-Only 7.6% recovered.

-Recovery was *more* likely in people who were in the ICU. This was something we saw early, but why?

A few thoughts:

1/ https://t.co/kdPhkTVR5mpapers.ssrn.com/sol3/papers.cf…

https://twitter.com/EricTopol/status/1679244390836084737

Those hospitalized with COVID, esp in the early pandemic, seem more likely to have forms of #LongCovid that are *not* the neurological form.

The neuro form seems to last longer (& often overlaps with ME/CFS & dysautonomia, lifelong conditions).



2/

https://twitter.com/ahandvanish/status/1599538152435163137

There is a National Academies conference today focused on *all* illnesses that start after infection & viruses, like multiple sclerosis & others.

Livestream:

(This is *not* the definition conference & *not* focused on #LongCovid, but LC is a part!)nationalacademies.org/event/06-29-20… Tim Henrich from University of California shows the many, many viruses that have long-term sequelae. 2/

My ability to tweet long research webinars has diminished, but I'm going to try here bc it's an important & under-researched area of #LongCovid!

It's on venous congestion disorders in the brain & neck & features amazing folks like @RuhoyMD & @ar_pnw. 1/

Up first, Dr. Ferdinand Hui at U Hawaii.

The blood pressure cuff was invented in 1896, but it took until 1975 to definitively confirm high blood pressure was bad for you.

We currently have NO tools to measure venous congestion.

2/

I want to highlight a couple big findings in the new RECOVER #LongCovid paper (aside from the definition) that may be missed!

Journalists in particular, you may be interested:

1/ First:

The overall prevalence of #LongCovid is 10% at 6 months!

The prevalence for those who got Omicron (or later) AND were vaccinated is also 10%!

This was a cohort enrolled in the acute phase, before they knew if they had LC - these are extremely reliable numbers.

2/

ME/CFS is a terrible illness that removes people from their own lives.

For #WorldMEDay, please consider watching this short video on it. More and more people you know will be getting ME/CFS from COVID, and it means so much to be understood.

1/ Here are three tweets from my own journey learning about ME/CFS - the first in August 2020, before I was even diagnosed myself:

https://twitter.com/ahandvanish/status/1294012452347273218?s=20

Just hopped on the NASEM call about the #LongCovid definition and Nancy Klimas is up! (I missed the first ~4 hrs). She's the amazing director of the Institute for Neuro-Immune medicine.

1/ She emphasizes that a clinical case definition needs to be *easy to teach* to medical providers, that having a complicated one harms patients. That research definition needs to be different and more tight.

2/

Later this week there is a discussion on the current U.S. definition of #LongCovid (working definition in screenshot below).

Welcoming input from the community on this thread!

1/ Definitions are super hard! Lots of competing decisions depending on how you're using it - i.e. the definition for research vs clinical use vs surveillence may all benefit from different angles/framings. There are no easy answers.

The current US definition for #LongCovid is:

2/

5 patients on this FDA panel:

1) Stephanie, had respiratory symptoms, did a #LongCovid clinic, got pulmonary rehab, included treadmill & bike, 24 sessions of respiratory rehab bc that's what insurance covered, but she is still continuing alone, took amantadine but didn't like it 2) Jackie, #LongCovid since Jan 22, has new onset ME/CFS & dysautonomia for COVID. Was prescribed exercise, learned the hard way that it was harmful. Bad PEM. Learned pacing, still uses pacing. "Exercise still causes me harm now." Takes >30 pills/day. Treated inhumanely.

With the FDA public meeting for #LongCovid coming up tomorrow, it's a good time to think about: what kind of drugs *could* we trial for #LongCovid?

The possibilities are honestly endless! Here is a sampling (absolutely not inclusive): 1. JAK-STAT inhibitors (Barcitinib, Rituximab)

2. Anticoagulants/antiplatelets (including supplements like Nattokinase/serrapeptase & Pycnogenol, but also Sulexodie, Sildenafil, statins, and triple therapy protocols)

A clarification of my Republican tweet & then I can’t spend more spoons on this:

I was communicating what I’ve been told by people in Congress (which is why “COVID is dead” is in quote tweets - meaning not my words!)

I wasn’t communicating my own beliefs or opinions. 1/ I don’t think & have never said we need to disassociate #LongCovid from the pandemic. Anyone who says or implies otherwise is not being truthful.

2/

Strong paper on cognitive impairment in young #LongCovid patients shows that younger patients have *worse and more marked* cognitive impairment compared to older patients!

Cognitive impairment was also found in 85% of the LC patients.

nature.com/articles/s4159… 1/ Of 22 cognitive tests, 16 tests were worse in younger patients! Only 1 was worse in older patients.

5 tests were not significantly different between the two groups. #LongCovid 2/

New paper on #LongCovid with ME/CFS (LCME) vs without (noME) over 20 months!

Overall, 52% of LC patients met ME/CFS criteria.

This paper is a goldmine & has so much info, including potential biomarkers to distinguish between the groups:

medrxiv.org/content/10.110… 1/ Fatigue:

LCME is more severe; 55% of LCME had severe fatigue vs 33% noME

At 17-20 months, 46% of LCME had severe fatigue vs 3% of noME (!!!)

2/

If you have #LongCovid, which of these best matches your experience with having an "inner monologue" (IM)?

Specifically mean "inner monologue" to mean you *hear* words in your head when you think.

verywellmind.com/does-everyone-… If you DID NOT have an internal monologue pre-COVID, did you think in any of these ways? 2/ #LongCovid