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Hannah Davis Profile picture
@ahandvanish
May 12 • 4 tweets • 2 min read Twitter logo Read on Twitter
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:

The second:

The third:

• • •

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More from @ahandvanish

Hannah Davis Profile picture
May 12
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/
Mentions the first definition for AIDS was "men 18-65 with Pneumocystis carinii pneumonia and other secondary infections." Not tight enough. Ideally of course is finding a biomarker and making a definition based on that.

3/
Read 6 tweets
Hannah Davis Profile picture
May 9
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/
"#LongCOVID is broadly defined as signs, symptoms, & conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection. The signs, symptoms, and conditions are present four weeks or more after the initial phase of infection; may be multisystemic; 3/
Read 11 tweets
Hannah Davis Profile picture
Apr 25
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.
Jackie: finding providers who know how to treat ME/CFS and dysautonomia helped most, uses IV hydration to prevent ER visits. Uses hormone replacement therapy, MCAS treatments, midodrine, and others. Treatments need to address autonomic dysfunction, viral persistence, & others.
Read 33 tweets
Hannah Davis Profile picture
Apr 24
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)
3. Antivirals for reactivation of latent viruses (Valcyte, Famvir, Valacyclovir, Artemisinin), also EBV vaccine when available

4. Intravenous immunoglobulin (IVIG), for many reasons but esp for those with Small Fiber Neuropathy
Read 12 tweets
Hannah Davis Profile picture
Apr 23
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/
Despite what it may seem, I’m not in the “mild” #LongCovid camp. I only have a few hours a day of being present & functioning, & I spend 90% of them working/advocating. 3/
Read 5 tweets
Hannah Davis Profile picture
Apr 21
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...
Younger #LongCovid patients showed cognitive impairment in any domain more often that older ones AND the severity of cognitive impairment was greater in younger patients. 3/
Read 6 tweets

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