“What we're seeing is that there's a unique signature of vascular inflammation in #LongCovid that is distinct from acute COVID. And it has to do with endothelial apathy and platelet dysfunction."
medscape.com/viewarticle/sc…
“The National Institute of Neurological Disorders and Stroke recently awarded her a 5-year K23 grant to support her ongoing study: Magnetic Resonance Imaging Biomarkers of Post-COVID-19 Cerebral Microvascular Dysfunction." #LongCovid

“The finding was even more stark when compared to six control samples.. T cells were activated in these scans, they were concentrated where you’d expect – the liver, kidneys, & other places known to help clear inflammation. In the #LongCovid patients, they were everywhere.” “There has been a large amount of inferential data supporting a view that a key factor underpinning #LongCovid may be some people do not properly clear the virus & harbor reservoirs of COVID in their tissues,” @Daltmann10 but “it’s been hard to prove.” iflscience.com/signs-of-covid…

“I have spent my career studying infectious diseases that fall under the heading of neglected tropical diseases. Now I have a neglected disease — #LongCovid — an incurable (for now and for me) disease.” statnews.com/2024/06/18/lon… “I was infected during Omicron wave.. It crashed through my kid’s kindergarten class and swept our household along with it. My acute infection wasn’t scary.. nothing in comparison to when I had dengue fever.. And then I just never got better.” #LongCovid

"I think that there's an enormous amount of education that needs to happen to inform parents that yes, your kid can get #LongCovid. Yes, it could be the reason why they're struggling in school right now” — @PutrinoLab “I'm grieving for the life he's lost & should be living.. he's missing his teenage years. I try to be positive.. But there are so many unknowns &.. battles — I'm constantly in battles with the school, to get medical letters, & having to advocate for him." abc.net.au/news/2024-06-1…

“Dr. Phillip Alvelda, a former program manager in @DARPA... believes that if things continue as they are, with new COVID variants emerging and reinfections happening rapidly, the majority of Americans may eventually grapple with some form of #LongCovid.” — @INETeconomics LP: “I suspect that most of the time, people don’t realize that.. #LongCovid is an underlying factor in things like accidents”

PA: “Correct. The surges in these incidents are exactly correlated with each wave of the pandemic”
ineteconomics.org/perspectives/b…

“I’ve been in practice 23 years and have never seen anything like this”

“We are completely under-investigating this virus — The effects of repeatedly getting this throughout our lives is going to be much more significant than people are thinking.” — @washingtonpost #LongCovid “The uptick in aggressive, late-stage cancers since the dawn of the pandemic is confirmed by some early national data and a number of large cancer institutions.”

The idea that some viruses can cause or accelerate cancer is hardly new.” #LongCovid
washingtonpost.com/health/2024/06…

“The @CDCgov estimates treatment fails for up to 10% of patients, who develop what is officially known as post-treatment #Lyme disease syndrome (PTLDS), a lingering condition that comes with symptoms like profound fatigue, body aches & cognitive impairment”time.com/6974403/chroni… “Over the last few years.. there’s been a renaissance in #Lyme research. Buoyed by widespread acceptance of #LongCovid —which similarly results in chronic symptoms after what ‘should’ be a short-lived illness—the medical establishment is looking anew at post-Lyme complications.”

“I had my fifth positive test for COVID on Jan. 1, and while I wasn’t extremely sick, my recovery felt slow. In the first week of March, there was no more denying the condition I previously doubted was real.” #LongCovid aspendailynews.com/opinion/marolt… “There also are studies suggesting that more of us, maybe many more, are going to eventually get #LongCovid… about 15% of people with one infection had LC symptoms. The number increased to 25% for those with 2 infections & jumped to 40% for people with 3 or more infections.”

It’s #MEAwarenessDay — Severe / Very Severe ME/CFS are among the worst (if not the worst) outcomes of #LongCovid, it’s horrifying & profoundly understudied.

I really encourage everyone to do 1 of 3 things today / this week.

1. Read this Ed Yong piece: archive.li/2023.07.27-111… 2. Watch the incredible @netflix documentary about #MECFS by @jenbrea — @unrestfilm — it’s now free on YouTube.

This is a stunning & incredibly well done film — it’s content like this that really starts to bridge the gap for folks on illnesses like this.

"Through this work, a significant revelation emerged. They observed patients with #LongCovid.. were unable to efficiently extract oxygen from their bloodstream.. This discovery identifies a specific cause underlying the biological underpinnings" — @YaleMed yalemedicine.org/news/what-is-l… "Recognizing the impracticality of conducting comprehensive exercise tests for every #LongCovid patient, Dr. Singh, along with other researchers, is focused on the identification of blood-based markers to assess the severity of Long COVID."

“America is in a funk, & no one seems to know why. Unemployment rates are lower than they’ve been in half a century & stock market is sky-high but.. Americans’ satisfaction with their personal lives.. is at a near-record low.” theatlantic.com/health/archive… “Nearly half of Americans surveyed in January said they were worse off than three years prior.. Experts have struggled to find a convincing explanation for this era of bad feelings.. We believe that’s because they’re overlooking a crucial factor.”

"Brain fog is having a significant impact on people’s livelihoods, says @WesElyMD... People with #LongCovid have a form of cognitive impairment that is often 'like mild and moderate dementia' he says." nature.com/articles/d4158… “What we demonstrated with the (@patientled) survey is that patients can lead high-quality research, and that it’s really necessary in order to have the most comprehensive look at a condition.” — @LisaAMcCorkell

Brief reminder — treating #LongCovid as “entirely new” is exactly what led to the disaster dump fire of so much of RECOVER / NIH approach to LC the last 4 years — How much time was lost because of that ? How many better trials could we have right now — if we paid attention? ffs.. Patients literally had to beg NIH to understand there could be sequela outside the lungs — had to fight tooth & nail for autonomic testing because the medical establishment largely hasn’t clue about autonomic disorders. Treating long Covid in a vacuum was a fking disaster.

“A new study has found that these symptoms may be the result of a viral-borne brain injury that may cause cognitive.. health issues that persist for years.”

“The brain deficits found in #LongCovid patients were equivalent to 20 years of brain aging”
medscape.com/viewarticle/ne…
“Blood sample was taken to look for specific biomarkers, showing that elevated levels of certain biomarkers were consistent with brain injury. Using brain scans, researchers also found that certain regions of the brain associated with attention were reduced in volume.” #LongCovid

“Researchers found several differences in the blood of people with #LongCovid compared to the healthy patients.. imbalance in proteins involved in blood clotting and inflammation..the immune system, called the complement system, was ramped up” prevention.com/health/health-… “In the case of #LongCovid, this complement immune system activation may be linked to microclots—tiny blood clots—that can form. ‘These can block the blood vessels and lead to damage,’ says Thomas Russo, M.D., professor and chief of infectious disease at the University at Buffalo

“@SenSanders summary takeaway of the hearing.. was that the federal government can and should be doing more to support #LongCovid patients — that statement from one of the ranking & most influential senators in Congress.. is a huge win for patients.” salon.com/2024/01/20/liv… “Prior to the infection, @AngelaMSWinCA was a healthy runner for nearly 20 years. Today, she is on 12 different prescription medications, including weekly IV treatments at hospital. She has ‘strict pacing regimen’ that allows her to work from home, but not much else.” #LongCovid

TODAY & TOMORROW — please call as many Senators on this list as possible & ask they attend the #LongCovid HELP hearing this Thursday 1/18

This might be our last chance to move congress to act 🧵 You can find the beautiful call guide at & outlined in this thread below 👇📞

It’s very easy & straightforward 🌝🚀 longcovidmoonshot.com

https://twitter.com/lcmoonshot/status/1745892164088074612

“Scientists around the world are in a race to figure out why millions of people suffer from #LongCovid”

“The study provides evidence that ‘LC is a tissue-based disease’ meaning.. dysfunction is happening in different organ systems, said @MichaelPelusoMD” sfchronicle.com/health/article… “A striking finding we made was that while this T-cell coordination was observed in those that successfully recovered from #LongCovid, as expected of normal, healthy individuals, it was lost in those with long COVID,” Dr. Nadia Roan, @UCSF said.

"The mitochondria are compromised & tissue starved for energy”

“The tissue samples from #LongCovid patients also revealed severe muscle damage, disturbed immune response, & buildup of microclots”

“They were able to link symptoms to these organic changes” npr.org/sections/healt… “The idea exercise can help patients has proven difficult to shake—despite evidence.. this isn’t merely a case pts can overcome by pushing through”

"I don't think the messaging has been strong enough" @PutrinoLab “It is very clear that this is not a typical response to exercise”

“#LongCovid Can Destroy Your Ability To Exercise – Now We Know How”

“Not only were their mitochondria functioning worse than before, but their muscles were showing signs of more severe tissue damage that their bodies were struggling to repair.” iflscience.com/long-covid-can… “Even more worrying, especially for those thinking they can rely on current good health.. is fact that all participants were of working age, fit, & healthy before catching the disease. None had become sick enough to be hospitalized, & all had healthy hearts & lungs” #LongCovid

I turn 34 today — I’ve now spent my entire 30s with #LongCovid — about as long as I was in high school or college. I haven’t been on a walk since Spring 21’ & remain severely housebound — whole thing is surreal.

thoughts for 2024 🧵 The deluge of folks who develop long Covid from this current wave are going to be offered the exact same help I was offered 4 years ago. We still have absolutely zero tools for #LongCovid — which according to @CDCgov still “remains common” after infection — while few recover.

https://twitter.com/loscharlos/status/1703125291022045509