“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…

Today is my 5 year anniversary of #LongCovid & it's all the harder as I unexpectedly lost my mom 2 weeks ago. This disease has taken so much from me, and I feel so fucking low. She was my best friend for most of my life, and I wish I could have had more healthy years with her. 🧵 When my mom was 25, she was in a catastrophic car accident that disabled her overnight (I was 2 at the time in the car & had only a scratch on nose) & she needed multiple major back surgeries throughout her life. I was her caretaker for most of my childhood.

Must read:

“Nath is among several academic researchers who have sought to repurpose drugs for #LongCovid only to be met with refusals from the pharmaceutical companies that make them. It's not clear why these manufacturers have balked at supplying drugs for these trials.” "You end up in this situation where nobody's making the commitment, aside from the people who actually want to do the research, and it just becomes this constant circular discussion," @MichaelPelusoMD, @UCSF says. cen.acs.org/pharmaceutical…

“As the pandemic continues and more people become disabled.. Public health professionals need to step up, movement activists and organizers need to mask up, and we all need to be in solidarity for those in the #LongCovid community.” —  @the_tattooedjew thesicktimes.org/2025/02/11/now… "Several government resources about accommodations for people with #LongCovid have become unavailable in the last week, following purges of government websites and datasets under the Trump administration. These pages offered crucial information about rights under the ADA"

“#LongCovid patients exhibit swelling in an area of the brain linked to memory problems, poor concentration & delayed responses during conversations, researchers have found”

“Those with LC or ME/CFS had a larger than normal hippocampus compared with.. healthy participants.” “The Griffith researchers, based at the National Centre for Neuroimmunology and Emerging Diseases (NCNED), compared high-resolution MRI brain scans from 17 #LongCovid patients, 29 #MECFS patients, and 15 people with neither condition.” abc.net.au/news/2025-02-1…

“A new study has found that young adults who have recovered from COVID-19 show distinct patterns of brain activity during cognitive tasks.. similar to those seen in much older adults and are particularly pronounced in individuals reporting ‘brain fog.’” #LongCovid “The research suggests that COVID-19 may have subtle, yet significant, effects on brain function that are not always captured by standard cognitive tests.

Scientists have been increasingly concerned about #LongCovid, especially on cognitive function” psypost.org/new-neuroscien…

“The evidence is clear that by having COVID numerous times, patients became more at-risk for developing #LongCovid” “He adds that after adjusting for relevant demographic, lifestyle, and clinical variables, the findings reveal a statistically significant association between experiencing multiple COVID-19 infections and the risk of experiencing #LongCovid.” medicalxpress.com/news/2025-01-p…

“Their study reveals that the SARS-CoV-2 spike protein can persist in the brain’s protective layers (the meninges) and skull’s bone marrow for up to four years after infection.”

This.. may drive chronic inflammation and heighten the risk of neurodegenerative diseases” #LongCovid “A novel AI-powered imaging technique developed.. provides new insights into how the SARS-CoV-2 spike protein affects the brain.. Using this technology, the researchers uncovered previously undetectable distributions of spike protein in tissue samples” scitechdaily.com/long-covid-bre…

I turn 35 today. It's been 1/2 decade & my entire thirties with #LongCovid essentially trapped in my house. I'm so fking sick of living with this condition, & tired of the rest of the world pretending it doesn't exist, yet wondering why they have all these new health problems🧵 In years past this came up occasionally — but the amount of people talking about new mysterious health problems with no concept or thought of #LongCovid has skyrocketed in my orbit online & off. It is almost comical. So much denial, avoidance & propaganda.

https://x.com/loscharlos/status/1874716650517438653

“Next time you think of dismissing COVID as just another.. common cold it may pay to visualise what you see so starkly in this paper, the virus moving freely around your body & finding long-term home.. where it can really cause trouble, including the brain & heart.” #LongCovid “This paper shows that the virus.. can persist around the brain for a long period of time, driving a pathological inflammatory response. This is proposed as a likely cause of the neurological symptoms people with acute and #LongCovid.” 7news.com.au/news/new-imagi…

New study from @universityofga:

"We found #LongCovid.. increased likelihood of facing financial hardships, such as food insecurity, inability to pay bills, and threat of losing services.. partially explained by employment loss or reduced work hours." onlinelibrary.wiley.com/doi/10.1111/14… "This, coupled with the fact that lower income groups had a disproportionately high share of #LongCovid cases indicate the need for targeted assistance programs aimed at protecting the poorest groups from long COVID-related hardships and thereby improving health equity."

"The cost of breaking [denial] is high & it’s hard. Even for someone like me, who is relatively well-resourced financially.. #LongCovid has been by far hardest thing I’ve ever done. So I understand why that denial is so strong" — @MattMcGorry @thesicktimes thesicktimes.org/2024/12/09/its… "Breaking the denial comes with high cost — especially in beginning. I empathize with that, because I understood that for myself too. As social animals, we often assess risk by looking at what others are doing. If everyone else is doing it, maybe its not so bad right?" #LongCovid

New #LongCovid funding announced:

"NIH recently received approval to reallocate $147M to support ongoing efforts of RECOVER. This allocation is in addition to $515 million NIH announced earlier this year, bringing total new funding to $662 million." nih.gov/about-nih/who-… "To date, the program is.. large.. with more than 40,000 participants. The adult cohort has donated more than 822,000 biospecimens, & pediatric has donated more than 85,000 biospecimens – all accessible through RECOVER biorepository for further studies within & beyond RECOVER"

One of the best reads of the year from @MattMcGorry

“The science is really clear getting Covid over & over again is not good for anyone. It feels like where the climate movement was 10 years ago, where scientists were saying things & people were not really listening.” #LongCovid “I was in denial about it.. I knew that if I did have #LongCovid, that I probably couldn’t afford to get it again, and if I couldn’t afford to get it again, then everything in my life would have to change. Breaking out of that denial was the first step.” theguardian.com/wellness/ng-in…

"Even if you're not concerned about others, you should still care about protecting yourself from multiple infections.. news has not done a great job talking about #LongCovid. As people get infected 2, 3, 4, & more times, they are playing against the odds" lifehacker.com/where-to-find-… "You can only get the intervention Paxlovid within 5 days of symptoms... one of the things we think helps prevent #LongCovid. Second, no one knows who will get LC, and you might need proof of that positive test in the future for insurance or benefits or even to justify sick days"

Reminder that some of the biggest issues Americans are currently concerned about are greatly impacted by #LongCovid — & we’ve still done absolutely nothing about it.

“The bottom line is that LC is.. why wage inflation remains so high” — Apollo Global Management “#LongCovid is why the labor force participation rate has not recovered to pre-pandemic levels, even in a situation with solid wage growth”

This continues to be a challenge for the Fed.. to get inflation quickly back to the Fed’s 2% inflation target.”
cnn.com/2023/02/03/inv…

“When we compare the rates observed in this study to the national population, it could mean as many as 2 million people may be out of work because #LongCovid

This is not a small problem. So it does require big interventions.” — @Yale news.yale.edu/2024/08/15/sic… "This is especially startling.. since the participants in this study were fairly young; the average age was roughly 40.

This has big economic impacts.. on those people individually in terms of their own income security & their ability to care for themselves and their families.”

“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…