“The clots caused by #LongCovid are made of unique proteins.. They're not typical #MicroClots we see with other diseases.. they're made up almost fully of abnormal type of fibrin.. amyloid" — Roy Silverstein, hematologist at Medical College of Wisconsin npr.org/2023/05/10/117…
“All #LongCovid patients Putrino has tested have microclots & hyperactivated platelets, which is something he doesn't commonly see in people who have never had COVID or fully recovered. It's this high level of microclots in LC patients that Putrino thinks might be the biomarker.”
"The spike protein has the capability to change your soluble clotting protein to insoluble little microclots.. @resiapretorius. "So when you have acute COVID you will have activated platelets, you will have vascular damage & endothelial damage” #LongCovid
“After around 2 weeks, the body will begin to break down those insoluble microclots & will return to normal. But for others, those microclots hang around & can damage blood vessels as well as block blood flow to many organs — which could explain #LongCovid wide-ranging symptoms”
“You get widespread and systemic-induced.. inflammation of your blood vessels.. If it's systemic, it means it's in every organ. It's in every part of your body," @resiapretorius says. #LongCovid
"It means that oxygen transfer cannot happen as it should, between your blood and your organ systems because the vehicle, the blood, is damaged these clots [are] in there. But more importantly, your vasculature is compromised." #LongCovid
“Often we are told, well, 'Everything's testing normal. We tested all standard panels, everything's.. normal.' I think one of the things that we need to say over and over again is.. standard blood panels we test for.. capture a very narrow scope of our physiology," @PutrinoLab
“The work @PutrinoLab and @resiapretorius are doing shows that the microclots they are seeing, in addition to hyperactivated platelets, ‘can really mess with your body's ability to function.’ The next step is to find a way to make a mainstream test for it.” #LongCovid
“There are other diseases that are marked by changes to the blood's clotting patterns in the capillaries, namely Thrombotic Thrombocytopenic Purpura (TTP) and Hemolytic Uremic Syndrome (HUS). The clots caused by #LongCovid are made of unique proteins.”
“[3 years is] a really, really long time to be suffering with this illness, which, in many cases has a quality of life just so, so low, like unfathomably low to most people — definitely unfathomably low to me..not having known about Post-Viral illness beforehand” — @ahandvanish
“Because of that urgency, @resiapretorius took an unusual step — crowdfunding donations to buy a flow cytometer.. In order to iron out a methodology that could work for clinical settings,” #LongCovid
While Pretorius.. is making progress, @ahandvanish says that it shouldn't have come to this.
“It shouldn't have to be like this, right?.. it should be the case that millions of dollars are designated for finding a biomarker or identifying & creating a test or both" #LongCovid
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“12-16% children and youth infected with Omicron met the research definition of #LongCovid at 3 and 6 months after infection, with no evidence of difference between cases of first-positive and reinfection” jpeds.com/article/S0022-…
“Our predominant, & actionable, finding is that children & youth (CYP) with #LongCovid from Omicron (both first infection & reinfection) have a similar profile to CYP with long COVID after infection with other variants & that substantial numbers of CYP are likely to be impacted.”
“A powerful Democratic lawmaker is interrogating the @NIH over its slow progress in addressing #LongCovid, citing a recent STAT investigation into the agency’s lack of urgency.” statnews.com/2023/05/11/esh…
“Rep. Anna Eshoo, House Energy & Commerce health subcommittee’s top Democrat, sent a letter to NIH acting Director Lawrence Tabak on Tuesday highlighting the agency’s delays in enrolling clinical trials, the lack of relief for patients, and…”
“… the exclusion of #LongCovid from the White House’s Next Gen program to accelerate development of Covid-19 vaccines and treatments. The Energy and Commerce Committee is responsible for overseeing the NIH.”
Before #LongCovid — I spent 2 years working to get this program off the ground — San Francisco’s first traveling movie night series, pairing films w parks — was a blast. Today is its 5th anniversary, & glad to see it continue.
Miss being able to work on & go to stuff like this.
This was first year— remember when we proposed idea to city, said “absolutely not” — I was shocked, I thought approval process would be breeze. Took 18 months to get to yes lol they were v hesitant on night programming in “certain” neighborhoods — long lesson in city politics.
Anyways, if you’re in Bay Area — they’re great (& free) events — music, local food & drinks before hand etc — also very accessible. I haven’t been able to go to one past 3 years — would love to this year if feeling up for it this summer. More info👇 dothebay.com/sundowncinema
“Even if researchers don’t care about protecting their staff, they should care about protecting their patients & not muddying their trial data with new infections in the middle of a trial.” — Lauren Stiles, a neurologist at Stony Brook & president of @Dysautonomia#LongCovid
“It’s frankly abhorrent, selfish behavior, & not only does it demonstrate a complete lack of regard & understanding for the illness in question. We’ve been traveling hundreds of miles for months in order to try to participate in their study &.. and this is what they think of us.”
“People with #LongCovid had lower levels of CD4+ & CD8+ T cells—immune cells involved in.. immune system response to viruses—compared to healthy controls.. also found increases in the numbers of B cells.. suggesting immune dysregulation” nih.gov/news-events/ne…
“Researchers used an approach called deep phenotyping to closely examine the clinical and biological features of #LongCovid in 12 people who had long-lasting, disabling neurological symptoms after COVID-19. Most participants had mild symptoms during their acute infection.”
“Consistent with recent studies, people with #LongCovid had problems with their autonomic nervous system, which controls unconscious functions of the body.. Autonomic testing showed abnormalities in control of vascular tone, heart rate, & blood pressure with change in posture.”