Hannah Davis Profile picture
Feb 1 6 tweets 7 min read
Thank you so much to @RepPressley for meeting with leaders of the #LongCovid & disability community to talk about major treatment, research, and policy needs, and her call to the CDC to #CountLongCovid!

Our full conversation is available here:

1/
Thank you to all the advocates (representing @patientled, @itsbodypolitic, @C19LH_Advocacy, @UTc19LongHaul & others) who spent energy giving amazing testimonies: @LisaAMcCorkell, @chiluvs1, @netiamccray, @LisaOBrienn, @SeeMiaRoll, @K_Bishof, @rubyslippahs, @annwlace409 & Molly 2/
A thing that stood out to me: Dr. Bateman (1:02:59), who spent her career seeing v disabled ME patients, saying:

"I was completely stunned by the disability & severity of illness in #LongCovid...the amount of cognitive impairment & physical impairment is just unbelievable."

3/
Representative @AyannaPressley was insistent that those most impacted be heard, and actively chose #LongCovid patients and disability leaders closest to the experience to participate, in line with the values of disability justice (which few leaders do!) 4/ Sins Invalid's list of 10 P...
Timestamps if you want to watch the testimonies:

@K_Bishof (3:22)
@LisaOBrienn (7:52)
@netiamccray (13:20)
@LisaAMcCorkell (18:21)
Molly Burch (22:35)
@annwlace409 (26:12)
@chiluvs1 (32:23)
me (43:32)
@SeeMiaRoll (50:43)
@rubyslippahs (1:09:20)

5/
I talked about cog dysfunction/memory loss, @patientled research, antibodies (& lack of antibodies in #LongCovid), test inaccessibility, biomedical research, ME/dysautonomia & outdated treatment info putting LC patients (esp kids) at risk of severe ME:

6/

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Hannah Davis

Hannah Davis Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @ahandvanish

Jan 5
Getting an illness that has been unnecessarily politicized is a nightmare.
I don’t want to deal with trolls and harassment for making threads about biomedical papers.
(and obviously there are many politicized illnesses, #LongCovid is just one. but one everyone wants to have an opinion on)
Read 4 tweets
Jan 5
New, very strong, meta-analysis published on 81 studies estimating #LongCovid prevalence!

Key findings:

32% of patients have fatigue at 12 weeks, 31% at 6+ months
22% have cognitive impairment at 12 weeks, 21% at 6+ months

Lots of additional info:

1/
sciencedirect.com/science/articl…
It focuses on 2 most common & debilitating #LongCovid symptoms: fatigue & cognitive impairment. Unlike other studies which don't include cognition or only include 1 impairment (i.e. difficulty concentrating), this includes memory & more comprehensive cognitive symptoms.

2/
A really key finding is that fatigue and cognitive impairment were not statistically significantly different between hospitalized and non-hospitalized patients!

This is a major point as the public assumes that non-hospitalized cases are "mild".

#LongCovid

3/
Read 10 tweets
Dec 23, 2021
This week marks the 1 year anniversary of @patientled's 2nd #LongCovid paper (now peer-reviewed & published: thelancet.com/journals/eclin…).

The good news: it got better information to many new researchers, including the accurate symptoms, neurological severity, & testing issues.
1/
It has over 200k views & several hundred citations, & informed policy in many countries & orgs, including the US, UK, Belgium, Spain, the WHO, CDC, & others.

The bad news:

2/
Most of this info is still not common knowledge to the general public & new patients. So many have no knowledge that cognitive dysfunction, memory issues, neurological issues, post-exertional malaise, dysautonomia (incl temperature & heart issues), & more are SO COMMON.

3/
Read 7 tweets
Nov 30, 2021
Exciting paper on endothelial dysfunction (ED) in #LongCovid! (Endothelium is a membrane that lines blood vessels).

"Long COVID-19 symptoms, specifically non-respiratory symptoms, are due to persistent endothelial dysfunction."

frontiersin.org/articles/10.33…

Some key points:

1/ Image
-Endothelial dysfunction (ED) is associated with high cholesterol!
-3 symptoms were associated with ED: fatigue, cognitive dysfunction, & shortness of breath. Others, including loss of sense of smell & cough, were not!

#LongCovid

2/ Image
-Reduced Left Ventricle GLS (Global Longitudinal Strain) was associated with #LongCovid (which I believe validates findings from @PutrinoLab et al?)
-There's a note that beta blockers were associated with reduced Long Covid symptoms

3/
Read 6 tweets
Nov 29, 2021
It might not be obvious to those without kids or those who aren't following COVID data closely, but schools are creating & normalizing some of the worst COVID policies. My friend is a teacher who was exposed to 2 students (both positive) during close in-person tutoring...

1/
But the school doesn't count it as an exposure because they were all masked & she doesn't have symptoms (yet - they take 5-6 days to appear).

They have a substitute teacher shortage (obviously) so she isn't even allowed to self-quarantine; they made her come back to work.

2/
Another school I know of started out saying a class only has to quarantine if 2 kids are positive; that moved up to 4 kids, then half. So if half minus one students in the class test positive, the class doesn't quarantine 🤯

3/
Read 5 tweets
Nov 19, 2021
I mentioned treatments on this panel today - #LongCovid providers need to learn what is available from existing post-viral illness & myalgic encephalomyelitis experts.

This list of treatments is from the ME/CFS Clinician Coalition & is super useful:

drive.google.com/file/d/1T6psBJ…
The ME/CFS Clinician Coalition is a wealth of resources. Here are a list of courses with Continuing Medical Education (CME) credits for new #LongCovid providers: mecfscliniciancoalition.org/medical-educat…

2/
Here is a recommended list of tests to do for #LongCovid patients if you're a new provider:

drive.google.com/file/d/1Yu79EY…

cc @WesElyMD @kavitapmd

3/
Read 4 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

:(