Hey all this is something I’ve been working on with my spare spoons over the past year & really excited it is out in the world!

Every month I get contacted by ppl who got #LongCovid from reinfection — & I hope this guide can help those looking for what to do.

More thoughts 🧵

https://twitter.com/patientled/status/2031781795432390773

About a year ago, @juliamv and I published an op-ed in @statnews making the case that #LongCovid patients have the right to try off label meds and clinicians have an obligation to consider, especially since 1 in 5 meds are already prescribed off label. /2

https://twitter.com/loscharlos/status/1849563630544851008

“If Covid is quietly accelerating cognitive aging… in working-age adults, the consequences will ripple through workplaces & health systems for years.”

“The incidence & prevalence of Alzheimer’s is going to just escalate,” he says. “It’s a huge public-health problem.” #LongCovid “Almost 5 years later, #LongCovid has had one of the fastest rises in diagnoses and become one of the most economically disruptive chronic conditions in modern medicine… Another analysis… put the annual economic toll of LC at $1 trillion” — @jwgale bloomberg.com/news/features/…

“After practicing medicine in so many different settings, he never imagined his profession could so completely fail his own child at her time of greatest need.”

‘I’m profoundly disappointed,’ he said.” #LongCovid “Focusing her eyes on written words or television brings severe headaches. Music she once enjoyed feels like an assault of noise her brain can’t process. She dons noise-canceling headphones & an eye mask, & lies still” #LongCovid
bostonglobe.com/2026/02/20/met…

Turn 36 today & I’ve spent my entire thirties with #LongCovid. When I turned 30 I was biking to work 10 miles a day, & since my mild covid infection — I struggle to walk more than a block or work more than a few hours a week.

Here’s 4 things I wish everyone knew: 1. The risk of this happening today is the same as in 2020. A new @NIH study shows risk of developing #LongCovid has not declined over time. We see new ppl every month in support groups from reinfections.

People do not understand this, & public health needs to communicate it.

https://twitter.com/ahandvanish/status/1968026903157280941

"Every subsequent infection increases the risk of #LongCovid & places people who already have it in greater danger. Here's what we don't know, is what it does to reinfect children over.. & over again with no endpoint in sight from the day they were born. We are about to find out” "It is neglect of the highest order to look children in the eyes & say, 'We knew how to protect you & didn't do it. We have access to a technology to prevent airborne disease.. that millions of our ancestors.. would kill for, & we refuse to use it,'"today.com/health/violet-…

“A growing number of scientists believe the SARS-CoV-2 virus may be subtly altering our immune systems. If correct, their hypothesis will change how we understand everything from RSV to shingles to sepsis.”

“It’s certainly impacting our immune health & probably.. overall health” “SARS-CoV-2 is linked to ‘an unusually high level of *indiscriminate* killing of T cells’.. reminiscent of measles, which can cause immune amnesia by depleting memory B cell, leaving people vulnerable to pathogens they were previously immune to.” bmj.com/content/390/bm…

“The research coming out is not quite breaking through,” she said. “But you have to see the problem to solve the problem.”

‘From what I can tell, no one is explaining the risk of #LongCovid,’ which may now be the top chronic illness in children” “The American Academy of Pediatrics and the @NIH estimate long COVID may have affected up to 5.8 million children, since research says between 1 in 10 to 1 in 5 of the children who recover from COVID later develop #LongCovid.” deseret.com/lifestyle/2025…

Incredibly exciting diagnostic tool potential — @ImmunoFever MIT team is doing nailfold capillaroscopies on #LongCovid patients before and after a NASA lean test, and said the results have been incredibly striking compared to controls.

My results were very abnormal ! They said they’re seeing lots of signs of microhemorrhage, enlarged and shortened vessels etc, and it seems the white blood cells move way slower through the vessels. They take photos of all fingers and toes and upload them to software that analyses results in real time.

Pretty captivating piece:

“In 2008 she was diagnosed with MS.. she found her fatigue disappeared.. after she started using (the UV light box)”

“Whatever sunshine is doing to prevent myriad ailments, it’s a lot more complicated than getting the skin to produce.. vitamin D.” “We don’t know what the golden molecule is; we just know it’s not vitamin D,” Hart says. “So you take a step back and give UV, which gives the skin a chance to make whatever it is.” scientificamerican.com/article/surpri…

Incredible piece👇

"#LongCovid isn’t a problem until we can find no other explanation for why millions.. are unable to work, school performance & children’s health decline in unison, & no one can remember what it feels like not to be sick all of the time" yaleglobalhealthreview.com/2025/05/18/a-c… "our bewildered response to crises like the LA fires tell us we may still be accustomed to addressing the climate crisis like the COVID-19 pandemic: as a question of how fast we can get back around to pretending like the problem is gone." #LongCovid yaleglobalhealthreview.com/2025/05/18/a-c…

“EBV was for years dismissed as a mild rite of passage.. But that view has been changing rapidly since a 2022 study provided strong evidence EBV is a trigger for multiple sclerosis.. Researchers also believe EBV plays a role in.. certain cancers.. a hidden driver of #LongCovid” “Cohen and Durkee-Shock believe EBV may have an even broader impact. Studies suggest a connection to #MECFS, and researchers are now exploring possible links to #dementia.”bloomberg.com/news/articles/…

“Their findings suggest that #LongCovid may have surpassed asthma—which around 5 million youngsters have—as the most common chronic condition experienced by American children.” “@VirusesImmunity added that ‘the most robust studies’ collectively suggest the number of children who get infected with COVID and then develop long COVID ‘is higher than the prevalence of asthma in children in the U.S.’” newsweek.com/why-are-so-man…

“When kids come to me, they’re very frustrated. They often will cry just because I’m listening to them & I’m not questioning whether or not they have #LongCovid” Yonker, MD

“The study found 14% of infected infants & 15% of infected preschoolers had LC, similar to rates in teens” “There is an underappreciation among parents and pediatricians that #LongCovid can present in younger children,” said Suchitra Rao, MD medscape.com/viewarticle/no…

“Children being absent from schools has become such a major issue.. but a doctor in Merced says the chronic absenteeism may actually be a symptom of #LongCovid”

“This really is a bigger issue than what the schools are potentially aware of.” “If we start to punish children and parents who are chronically absent and there’s an underlying undiagnosed #LongCovid illness, then that defeats the purpose,” Roussos said. “We really need to focus on the cause of chronic absenteeism.” yourcentralvalley.com/digital-enterp…

“By binding fibrinogen, the spike protein might be interfering with normal immune signaling, preventing efficient recognition and clearance of the virus. This could contribute to prolonged viral persistence in some patients, leading to chronic or severe disease.” #LongCovid “As a computational biologist, I have always been fascinated by the unseen molecular dialogues between viruses and host cells. The fact that a virus can exploit a key clotting protein to evade immune detection is both astonishing and humbling.“ #LongCovid medicalxpress.com/news/2025-03-h…

New study from @NIH:

“Compared to the 1st infection, a 2nd infection was associated with significantly increased risk of an overall #LongCovid diagnosis.. during Omicron period in the pediatric population”

“A total of 465,717 individuals..were included” medrxiv.org/content/10.110… “The risks were consistent across various organ systems, including cardiovascular, respiratory, gastrointestinal, neurological, and musculoskeletal systems.” #LongCovid medrxiv.org/content/10.110…

“@EricTopol.. VP of Scripps Research, said he knows people who have been infected within the last three to four months who have #LongCovid.”

‘It’s nonstop. People are still getting it,’ he said.” “@ahandvanish.. processing speed on a cognitive test dropped from the 96th percentile right before the pandemic to the 14th percentile after her coronavirus infection.” #LongCovid washingtonpost.com/wellness/2025/…

LETS GO!!!!! GRANTS RESTORED🔥🔥

“#LongCOVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding” — @thesicktimes thesicktimes.org/2025/03/28/upd… “#LongCovid advocates stepped up to contact their reps.. for RECOVER funding & other federal LC initiatives to remain in place. While the research program’s broader future remains uncertain, these restored grants are a significant milestone.” thesicktimes.org/2025/03/28/upd…

Best piece I’ve read on Covid’s impact on the brain:

“Scientists have found that those who have had Covid are more likely to have elevated levels in their blood of the same proteins that are prevalent in people with Alzheimer’s disease.” #LongCovid “5 years after.. researchers are increasingly recognizing the toll Covid can take on brain health. Many of those who have had the disease struggle with persistent issues such as.. cognitive slowing, hindering their ability to work & otherwise function.” bloomberg.com/explainers/doe…

“For the longest time in the field of immunology, there was the sort of adage that your immune system needs to be tested every now and again to stay strong. That's an old-fashioned idea.” — David Putrino, Icahn School of Medicine at Mount Sinai #LongCovid “The more new-fashioned and evidence-based idea is that, although your immune system can take on [a COVID] infection, you want to avoid testing it as much as possible because your body is sustaining damage with each infection that it survives.” #LongCovid cbc.ca/radio/quirks/b…

“The inconvenient truth is that what happened to me with #LongCovid can happen to anyone after a viral infection. Though my illness has weakened my body, it has only strengthened my resolve to tell others how to avoid the same fate.” — @julialmv “5 years ago, I was a long-distance runner with seemingly limitless energy.. and an active professional and mother of a busy young daughter. Today, I use a wheelchair to complete daily activities and am mostly housebound” #LongCovid usnews.com/opinion/articl…