charlos Profile picture
😎🌁🎷 #LongCovid March 2020 😵‍💫
David E. Anderson Profile picture ARP Profile picture Myrne Stol (she/they) Profile picture Loofymectin aka Jan Masleid Profile picture Wendi 🐸 Profile picture 10 subscribed
Jun 9 21 tweets 4 min read
“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 Screenshot of the Washington Post headline “Unusual cancers emerged after the pandemic. Doctors ask if Covid is to blame.”   sub headline “it’s not a new idea that viruses can cause or accelerate cancer. But it will probably be years before answers emerge about Covid and cancer.” “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…
May 19 20 tweets 4 min read
“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”… “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.”
May 15 12 tweets 2 min read
“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… “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.”
May 12 5 tweets 2 min read
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:… 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.
Apr 17 6 tweets 1 min read
"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… "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."
Apr 14 22 tweets 4 min read
“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.”… “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.”
Apr 3 6 tweets 2 min read
"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."… “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
Feb 12 12 tweets 3 min read
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.
Feb 8 7 tweets 2 min read
“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”…
Screenshot of a Medscape medical news article with the headline “new evidence suggest long Covid could be a brain injury” “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
Jan 23 9 tweets 2 min read
“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”… “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
Jan 20 8 tweets 2 min read
“@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.”… “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
Jan 16 5 tweets 2 min read
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 🧵 List of Senate HELP committee members and their phone numbers, along with a map of the states they represent and the incidence of long Covid You can find the beautiful call guide at & outlined in this thread below 👇📞

It’s very easy & straightforward 🌝🚀
Jan 12 11 tweets 2 min read
“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”… “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.
Jan 9 21 tweets 4 min read
"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”… “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” Image
Jan 8 7 tweets 2 min read
“#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.”… “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 Screenshot of a “I fucking love science” article  headline: long Covid can destroy your ability to exercise – now we know how”
Jan 2 12 tweets 3 min read
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.
Dec 31, 2023 5 tweets 2 min read
@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 John Favreau retweeting Zeynep giving lukewarm lip service to long covid — with pitying remarks that quote “Omnicom data” tweets — one of the most minimizing Covid accounts of the entire Internet. @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
Nov 25, 2023 7 tweets 2 min read
“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… “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
Nov 17, 2023 10 tweets 2 min read
"#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."… "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
Nov 13, 2023 12 tweets 3 min read
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."… “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. Image
Nov 7, 2023 10 tweets 2 min read
“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”… “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.”