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Hannah Davis Profile picture
Hannah Davis
@ahandvanish
Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked
DLlewellyn Profile picture Κασσάνδρα Παρί پری Profile picture Perpetual Mind Profile picture The Real Dr. Steven Horvitz Profile picture Peter English #FBPE Profile picture 26 subscribed
May 1 • 5 tweets • 2 min read
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…
graph showing levels of circulating Megakaryocytes; very low for healthy controls, high for severe Covid and Long Covid 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-…
Oct 30, 2023 • 7 tweets • 2 min read
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. 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.
Sep 20, 2023 • 13 tweets • 4 min read
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/ 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/ slide that says "ME/CFS - A curable disease?"
Sep 11, 2023 • 24 tweets • 4 min read
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/
Jul 27, 2023 • 33 tweets • 5 min read
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/ "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/
Jul 13, 2023 • 10 tweets • 3 min read
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…
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/
Jun 29, 2023 • 11 tweets • 3 min read
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/
Jun 27, 2023 • 60 tweets • 9 min read
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/
May 25, 2023 • 8 tweets • 4 min read
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/
May 12, 2023 • 4 tweets • 2 min read
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:

May 12, 2023 • 6 tweets • 3 min read
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/
May 9, 2023 • 11 tweets • 4 min read
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/ Long COVID is broadly defin... 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/
Apr 25, 2023 • 33 tweets • 10 min read
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.
Apr 24, 2023 • 12 tweets • 5 min read
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)
Apr 23, 2023 • 5 tweets • 2 min read
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/
Apr 21, 2023 • 6 tweets • 3 min read
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/ P-values of the 22 tests do...
Apr 18, 2023 • 14 tweets • 4 min read
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/
Mar 13, 2023 • 5 tweets • 2 min read
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
Mar 6, 2023 • 12 tweets • 4 min read
I have ME/CFS from COVID. I also have dysautonomia from COVID. There are specific definitions for each condition.

It wouldn't be possible to solve #LongCovid without also solving these, because for millions of us (prob about half of people with LC), LC *is* these conditions. 1/ Researching them as part of LC does not exclude researching other conditions that come from COVID (including clots and other vasculopathies, which have also been shown & hypothesized in these conditions).

2/
*me-pedia.org/wiki/Hypercoag…

*journals.plos.org/plosone/articl…
Feb 16, 2023 • 13 tweets • 4 min read
Such a good, personal, extremely well-observed piece on what brain fog is in ME/CFS! Goes through mild, moderate, and severe brain fog.

#LongCovid 1/ Moderate brain fog:

"Thoughts & feelings are reduced to abstract versions. They are unreachable, vague, blurred versions of the full thoughts/emotions. You can think & feel the general idea/feeling, but you can't think or feel any details about it." #LongCovid 2/
Feb 13, 2023 • 14 tweets • 6 min read
Good new piece out today from @KatherineJWu on The Future of Long Covid.

"The emergency is not about to end."

Quotes from @PutrinoLab, @LisaAMcCorkell, @TheCrankyQueer, @Dr2NisreenAlwan, @dgurdasani1, Steven Deeks, myself, and others.

theatlantic.com/health/archive… #LongCovid 1/ "For people who have #LongCovid now, or might develop it soon, the interventions are still scant. To this day, “when someone asks me, ‘How can I not get long COVID?’ I can still only say, ‘Don’t get COVID.’”
-@PutrinoLab