Hannah Davis Profile picture
Feb 11 7 tweets 4 min read
I think a lot of people assume #LongCovid is a continuation of the acute COVID symptoms, that just take a long time to get over.

In reality it is an often delayed onset of *new* neurological, immunological, cardiovascular, and systemic symptoms.

1/
We know a lot about #LongCovid by now. We know it has complex, multi-systemic, interlinking causes, including microclots, deformed blood cells, immune system dysfunction, dysfunction of mitochondria (which are responsible for energy production - dysfunction is a big deal!)

2/
We know enough about #LongCovid to know it's not a simple illness, & is causing major systems of the body to become dysfunctional in ways that medicine is not yet advanced enough to fix.

We know for many manifestations, incl dysautonomia, microclots, ME/CFS, there is no cure. 3/
Too tired to continue this thread atm but if you are someone who thought #LongCovid was just "not getting better from Covid symptoms", please update your models. 4/
Will also just add: #LongCovid is not having one or two random symptoms. In our @patientled data we found patients experienced an *average* of 56 symptoms. It's really hard to mistake.



5/
If you are experiencing #LongCovid, I recommend joining @itsbodypolitic wearebodypolitic.com/covid19

6/
@itsbodypolitic Also adding a fact I wish everyone knew: #LongCovid is associated with fewer (or no!) COVID antibodies.

(medrxiv.org/content/10.110… & medrxiv.org/content/10.110…)

Also high levels of autoantibodies seen in LC anticorrelate with protective COVID antibodies!

7/

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More from @ahandvanish

Feb 7
Some evidence suggesting that #LongCovid patients might be more susceptible to breakthrough infections:

1/
“The team found that [LC patients have more autoantibodies], & that as autoantibodies increase, protective SARS-CoV-2 antibodies decrease. This suggests a relationship between #LongCovid, autoantibodies and patients at elevated risk of re-infections.” 2/

bloomberg.com/press-releases…
“Many patients with high autoantibodies simultaneously have low (protective) antibodies that neutralize SARS-CoV-2, and that’s going to make them more susceptible to breakthrough infections,” said Daniel Chen, a co-first author of the paper.” #LongCovid

3/
Read 4 tweets
Feb 4
Thank you to Mike for this piece on our #LongCovid work at @patientled & @itsbodypolitic in the context of what we're up against: a long history of medical gaslighting. Many illnesses (AIDS, cancer, MECFS, colitis, MS) were dismissed before their biomedical cause is found. 1/
The toll of doing advocacy in this environment is high (for us now, & also everyone who came before us).

It's been hard for me to be this vulnerable about this experience so extra thanks to @mikesmariani - a #pwME himself - for treating this topic with grace. 2/
The gaslighters are loud, but they're a minority. And they are quickly being shown to be not just historically cliched, but medically wrong, given how much #LongCovid research is already available. 2 years into this we already have evidence of...

3/
Read 7 tweets
Feb 1
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/
Read 6 tweets
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

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