“I was initially diagnosed with #MECFS 10 years ago..

I was unresponsive to everything until beginning rapamycin treatment, 6 mg once weekly in December 2021. I noticed an improvement in 3 weeks and by 6 weeks I was in remission.” healthrising.org/blog/2022/07/0… “Why was I interested in this drug? In 2009, Rapamycin was found to significantly extend the lifespan of a mammal, a mouse. Only severe calorie restriction (30-40%) had previously been shown to increase lifespan and health span.”

Wrote a piece in @statnews today with @julialmv

It’s been almost 5 years since me & millions had our lives destroyed by #LongCovid — & still no approved treatments.

Many of us are fighting for our lives to get access to off-label meds for some relief.

Where is the help? 🧵 The burden of researching & trialing potential treatments for #LongCovid has been left almost entirely on patients.

This is a disastrous public health crisis & we need medical providers to step up — & US Gov to provide guidance on the evidence to date. 2/
statnews.com/2024/10/24/lon…

“The American Medical Association’s top journal, JAMA, in August published a key new study and editorial about pediatric #LongCovid. The editorial cites several robust analyses and concludes that.. LC symptoms appear to occur after about 10-20% of pediatric infections.” “The mistaken idea that children have nothing to worry about has had some help from scientists. In 2023 AMA’s pediatrics journal published a study reporting #LongCovid in kids was ‘strikingly low’..

In August, the authors of the study retracted it”
scientificamerican.com/article/long-c…

“Matthew Fitzgerald, a 28-year-old former engineer at Tesla, described his #LongCovid impairment during a clinic visit: ‘I’m a shell of myself. My physical issues aren’t half as bad as my brain problems. You can say brain fog, but that doesn’t come close to doing it justice.’” "There is now ample evidence that both older and younger people with #LongCovid and other infection-associated chronic conditions are at risk of developing #Alzheimers disease and related dementias (ADRD)." nature.com/articles/d4158…

"Whether they were hospitalized or not, adults who have had COVID-19 are about 36% more likely than uninfected people to develop GI disorders including ulcers, pancreatitis, IBS, & acid reflux, according to a study in Nature Communications." #LongCovid time.com/7027179/covid-… "GI problems are also common among kids with #LongCovid. Stomach pain, nausea, and vomiting are telltale signs of the condition among children younger than 12, according to 2024 research published in JAMA."

“Viruses hide, that’s what they do,” said @PutrinoLab. “If you’re finding evidence of them in plasma, that probably tells you that there’s a lot more going on in tissue where viruses like to hide, like nerve tissue, gut tissue, joint tissue, et cetera.” #LongCovid “Walt’s team applied.. blood test 1,000x more sensitive than standard laboratory tests to 1,569 blood samples.. The ultra-sensitive tests, detected fragments of virus’s signature spike proteins in roughly 43% of samples drawn from those [w/] #LongCovid” bostonglobe.com/2024/10/15/met…

“In the most expansive study of its kind, researchers have for the first time shown serious and prevalent symptoms of #LongCovid in kids and teens.

The study, which followed 5367 children, found that 20% of kids (ages 6-11) and 14% of teens met researchers' threshold for LC” “By enrolling children who had been infected with acute COVID-19, as well as those who had not, researchers were able to isolate #LongCovid symptoms in kids and teens”
medscape.com/viewarticle/lo…

“The Center for Health Security at Johns Hopkins University have developed a Model Clean Indoor Air Act, which state legislatures throughout the country could use in writing new indoor air laws.” "We—and especially our children—should be able to walk into a store or a gym or a school and assume the air is clean to breathe. Like water from the faucet, regulations should ensure our air is safe." scientificamerican.com/article/kids-a…

“Schools must make it safe for all children that attend, whether they currently suffer from #LongCovid or not,” Robertson said. “Many children are.. just one more infection away from developing the debilitating effects of long COVID.” “We feel we will never heal from this as long as schools have no ventilation, open windows, air purifiers, and policies that children and staff can come to school while actively positive with COVID," #LongCovidKids salon.com/2024/10/06/for…

“There are political reasons to deny that there are any long-term effects of COVID,” @kfrhoads said, “to allow for us to ‘get back to normal.’”

“Dr. Linda Geng said #LongCovid has become a ‘huge public health problem,’ affecting millions of people in the United States long term” “It really shows that this bill has broad support — as it should — because it’s aiming to address the crisis of #LongCovid in a way that puts the resources that are necessary behind it,” @LisaAMcCorkell said kqed.org/news/12006894/…

“A new study reveals that people who had two COVID-19 infections were more than twice as likely—and those who had three or more COVID-19 infections were almost four times more likely—to report #LongCovid as those with one infection.” "The study involved 3,382 global survey respondents and was conducted by researchers with @patientled on #LongCovid. It was published this week on Research Square, which is the preprint service of the Nature Portfolio." cidrap.umn.edu/covid-19/covid…

“In U.S, about a million more working-age adults reported having serious difficulty remembering, concentrating.. compared to before the pandemic, according to a New York Times analysis”

“Studies have even found that people’s brains can shrink after having COVID-19” #LongCovid “Vibell is currently trying to measure #LongCovid inflammation and neuronal damage.. When he began publicizing the study, he says, ‘I got so many emails from lots of people saying the same thing’: that they’d never fully bounced back after the pandemic.” time.com/7021575/covid-…

“Without more public or private investment, it’s unclear how research can proceed. The small corner of the private sector that has endeavored to take on #LongCovid is slowly becoming a graveyard.” “At least 4 companies that were developing LC treatments have shut down because of.. lack of finances. Others are evaluating a shift away from #LongCovid.”

“Levy says the company tried to communicate with NIH RECOVER multiple times but never heard back” cen.acs.org/pharmaceutical…

“These abnormalities were through advanced imaging techniques like dual-energy CT scans & ventilation-perfusion scans. These tests revealed a non-segmental & ‘patchy’ perfusion abnormality in the upper lungs, suggesting that the problem was vascular, Price explained.” #LongCovid “Most patients (n = 26) were treated with apixaban, potentially contributing to the observed improvement in gas transfer parameters, Price said.” #LongCovid medscape.com/viewarticle/pa…

“Our ‘new normal’ should not include at least 11% of the population falling chronically ill with #LongCovid after each infection.”

“The narrative that we are back to normal.. is not based in reality." — @MVGutierrezMD & @dysclinic journals.lww.com/ajpmr/citation… “It is wishful thinking at best and willful ignorance at worst.”

“Our ‘new normal’ should not include trillions of dollars in economic loss due to #LongCovid”

“New research from the University of Kentucky shows compelling evidence that the cognitive impairments observed in #LongCovid patients share striking similarities with those seen in Alzheimer's disease and related dementias.” "EEG patterns in.. patients resemble those seen in early neurodegenerative diseases”

"These similarities may be due to shared issues such as brain inflammation, astrocyte activity, low oxygen levels and blood vessel damage" #LongCovid medicalxpress.com/news/2024-09-a…

“This is a public health crisis for children,” Dr. Rachel Gross, at NYU Langone

“Gross said the U.S. will see the long-term impacts of experiencing #LongCovid in childhood for decades to come.” “Dr. Dean Blumberg, chief of pediatric infectious diseases and associate professor in the Department of Pediatrics at the University of California, Davis, told Salon he agreed #LongCovid is a ‘public health crisis’ for children.” salon.com/2024/08/26/lon…

“Never before have so many Americans redrawn their relationships with work as result of 1 public-health crisis”

“People at height of careers in finance, technology & healthcare are operating without clarity on when, or if, they can resume the paths they once laid out” #LongCovid “#LongCovid has pushed around 1 million Americans out of the labor force, economists estimate. More than 5% of adults in US have long Covid, and it is most prevalent among Americans in their prime working years.” wsj.com/health/wellnes…

“Despite the dire impact of #LongCovid on individuals and society, I fear that many are still unaware of the danger,” says @VirusesImmunity, professor of immunology at @Yale “There is an urgent need to provide.. treatment for people living with long COVID.” “More COVID infections mean more cases of #LongCovid. And LC is already exacting enormous toll on both the people & economies of the world.
Those are words you aren’t hearing from many government bodies. But, researchers say, the evidence tells the story”
fortune.com/well/article/l…

“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…