"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

@jonfavs maybe amplify some voices with lived experience with #LongCovid — & not the most minimizing voices in the space?

Her NYT piece convinced your class of pundits of the lie “LC is real, but rare” in the name of “vax & relax” & decimated our political capital.

#PodSaveJon @jonfavs I get the sense you want to embrace yourself more into this issue, so please consider reading this piece in the Atlantic by the best & most trusted journalist on #LongCovid — @edyong209

@CrookedMedia / @PodSaveAmerica / @TVietor08 / @danpfeiffer / @jonlovett

https://twitter.com/edyong209/status/1648767477776539677

“On face of it, it doesn’t make sense. Once you get infected by a pathogen, your body should be better prepared.. Except it doesn’t appear be working that way for many people. Instead of being better at fighting.. they’re getting more hammered” #LongCovid healthrising.org/blog/2023/11/2… “Thus far, the study evidence is limited, but that’s the direction it’s pointing at.. His latest study, ‘Postacute sequelae of COVID-19 at 2 years’ — found that the more times a person had been infected by the coronavirus, the worse off they tended to be.” #LongCovid

"#LongCovid Is Not Going Away"

"Doctors from across the country who were surveyed say they are still seeing plenty of patients with LC for the first time — the persistent symptoms.. are debilitating & devastating, lasting months or possibly years." medscape.com/viewarticle/99… "Every single provider in the United States is going to have a #LongCovid patient. So it's not just about educating those at long COVID or post-COVID centers. It's about educating the entire medical community as a whole" said @K_Bishof, of @C19LH_Advocacy

Wow — from @nytimes

"Can't Think, Can’t Remember: More Americans Say They’re in a Cognitive Fog"

"Adults in their 20s, 30s and 40s are driving the trend. Researchers point to #LongCovid as a major cause."
nytimes.com/2023/11/13/ups… “Richard Deitz, an economist at the Federal Reserve Bank of New York, analyzed the data and attributed much of the increase to #LongCovid”

“These numbers don’t do this — they don’t just start suddenly increasing sharply like this,” he said.

“People infected multiple times with COVID-19 are more likely to develop #LongCovid, and most never fully recover from the condition. Those are two of the most striking findings of a comprehensive new 3-year research study” medscape.com/viewarticle/99… “Most people do not really fully recover.

There are people who think, ‘This is a nothing-burger anymore,’ or ‘It's not an issue anymore.’ — #LongCovid is still happening with the current variants.”

"Everyone who's engaged in #LongCovid research should now be thinking about this.. pathway," — @VirusesImmunity

"I'm impressed by the study," says Dr. Monje, @Stanford. "I think they did a beautiful job showing the causality of these changes." npr.org/sections/goats… “The study weaves together several prominent lines of evidence on the potential drivers of #LongCovid — the ongoing presence of viral material, blood clotting and chronic inflammation — and offers up possible targets for clinical trials that can test treatments in humans.”

Spent weekend reading this — & think is a must read for #LongCovid advocacy

Overview of FDA history — HIV/AIDS impact & incredible case study with ALS of pros/cons of accelerated drug approval.

Really worth reading in entirety, but a few highlights🧵
newyorker.com/magazine/2023/… “Historically, @US_FDA has required 2 ‘adequate’ trials before it approves a drug. In Amylyx’s case, a subsequent trial was likely to take 3 more years. The A.L.S. community felt that there was no time to waste. The majority of current patients would be dead if they had to wait”

“In their study researchers at @Penn suggest serotonin reduction is triggered by remnants of the virus lingering in the gut.”

“This is one of several new studies documenting distinct biological changes in the bodies of people with #LongCovid” — @nytimes nytimes.com/2023/10/16/hea… “The authors said the biological pathway that their research outlines could unite many of the major theories of what causes #LongCovid: lingering remnants of the virus, inflammation, increased blood clotting and dysfunction of the autonomic nervous system.”

"Consensus has emerged among experts who study & treat #LongCovid: Paxlovid seems to reduce the risk"

"..people are not using it. It’s really, profoundly sad.”

Maybe because people STILL have not been warned about it?
nbcnews.com/health/health-… "Clinical observations and a large study published in March support that theory. Among the 282,000 people in the study who were eligible for Paxlovid, the drug was associated with a 26% lower risk of #LongCovid."