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.
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/
“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/
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/
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!
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/
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".
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/