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sarah

@sarahwlongcovid.bsky.social
119 followers 198 following 23 posts

public diary of an inflamed brain | long covid ca. 2020 | pro-mask, anti-histamine | pots/dysautonomia, mcas, et al

PostsRepliesMedia
Reposted by sarah
blaine @jblainefoster.bsky.social · 03/06/2026
I suggest some graded lit review therapy where they slowly increase the number of studies they read that explore biological mechanisms of the disease
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sarah @sarahwlongcovid.bsky.social · 03/06/2026
My joy in life has been severely diminished due to the onslaught of corporate ai-fawners so this bubble can fucking crash any day now
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sarah @sarahwlongcovid.bsky.social · 03/06/2026
Life update: still have long covid, not recovered, actually worse rn because of trying tirzepatide in hopes of regaining some stamina, it’s been 5+ years of this and being on my feet for 45 minutes made me crash for 2 days last week. Also that one article gave me an aneurysm I think.
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sarah @sarahwlongcovid.bsky.social · 10/06/2025
FUCK corporate FUCK shareholders FUCK profits
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sarah @sarahwlongcovid.bsky.social · 10/06/2025
I AM SICK AND TIRED OF ALL THE ABLEIST BULLSHIT Stop it.
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Reposted by sarah
Jessica Ellis @baddestmamajama.bsky.social · 24/02/2025
And hey, start with wearing a mask so you can stand with disabled and chronically ill people already being targeted by the administration. Go back for the people you’ve already left behind.
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Jessica Ellis @baddestmamajama.bsky.social · 24/02/2025
If you’re starting to feel willing to punch Nazis but still no desire to protect your vulnerable allies, ask yourself about that.
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Don Moynihan @donmoyn.bsky.social · 06/02/2025
Oh
About 1 on 3 of trumps picks have been accused of sexual assault
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Mari Brighe @maribrighe.bsky.social · 05/02/2025
If only they were some kind of obvious and direct analogy to an event in history committed by an authoritarian regime that later committed atrocities on a mass scale.
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Dr. Lucky Tran @luckytran.com · 06/02/2025
Reports that Musk/DOGE is at the NIH 😬
Reports are that DOGE staffers are now at NIH
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Briana Mills, LMFT ♿️🏳️‍🌈 @brianamillslmft.bsky.social · 05/02/2025
“I would punch a N*zi.” Um, you won’t even wear a mask.
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The New York Times @nytimes.com · 05/02/2025
President Trump has opened the throttle on blowing through apparent legal limits, often with no clear public explanation for how their actions could be consistent with the rule of law. Here are some examples of the administration’s defiance of statutes. nyti.ms/4aKnKRP
Donald Trump signs a paper. He is wearing a blue suit and a blue tie. A headline reads: "How Trump's Actions Are Defying Legal Limits." Photo credit: Eric Lee/The New York Times.
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Rolling Stone @rollingstone.com · 04/02/2025
Commentary: "Americans rely on government to protect us — or at the very least do us no harm. But for Trump, this duty as protector in chief is always subordinate to an insatiable need for aggrandizement, to paint himself as the bold actor, and the strong man."
rollingstone.com
Trump Drains California's Most Precious Resource for a Photo Op
President Donald Trump ordered the dumping of “billions” of gallons of water in California's rainy season, double-crossing the state's farmers.
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Disabled Anarchist @disabledanarchist.bsky.social · 31/01/2025
Anyone can become disabled in an instant, you could wake up disabled tomorrow. The ease with which you will be discarded will be shocking. Not just from society at large, but also from friends and family. If you are abled you should be angry about the rampant ableism, because you're on bided time
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Dr. Lucky Tran @luckytran.com · 31/01/2025
According to leaked emails, CDC staff have been ordered to remove pronouns from their email signatures by 5pm today.
“Staff are being asked to alter signature blocks by 5 p.m. ET today … Pronouns and any other information not permitted in the policy must be removed from CDC/ATSDR employee signatures”
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Rep. Mark Pocan @pocan.house.gov · 31/01/2025
As Chair of the HIV/AIDS Caucus, let me be clear: erasing HIV/AIDS content from government websites helps literally no one. It endangers public health and abandons those who rely on these critical resources. Reckless and stupid.
nbcnews.com
CDC site scrubs HIV content following Trump DEI policies
The federal health agency began removing all content related to gender identity on Friday.
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Shenanigans @shenanigans.bsky.social · 30/01/2025
Sorry I'm just in a really bad place right now (United States)
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Random Man James @jamesds.bsky.social · 31/01/2025
abcnews.go.com/US/usda-orde... Trumpism: = dictatorship
abcnews.go.com
USDA orders removal of climate change mentions from public websites
The U.S. Department of Agriculture has directed officials to remove content related to climate change from its public websites, according to emails obtained by ABC News.
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Erin M Speckley @speckley.bsky.social · 31/01/2025
Jumping off this for alternatives to the word "crazy": Wild Irrational Ridiculous Silly Absurd Strange Outrageous Out of this world Exciting Infatuated Passionate Enthusiastic Impractical Senseless
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Sarah Brown @brownepoints.bsky.social · 30/01/2025
I'm not gonna lie, I'm floored that a university would call off a Lunar New Year event open to everyone because it might be "DEI"
statenews.com
MSU college abruptly cancels Lunar New Year event, citing Trump DEI orders - The State News
MSU cancelled an annual Lunar New Year celebration following new executive orders targeting DEI and concerns from students.
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sarah @sarahwlongcovid.bsky.social · 30/01/2025
He knows executive orders aren’t twitter, right? Right? 🤮
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 30/01/2025
This will ALSO help us with The Horrors 1 like, 1 hard-won advocacy tip
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Christopher Webb @cwebbonline.com · 30/01/2025
Bravo to Sen. Alsobrooks for her question. “We should not be giving Black people the same vaccine schedule as Whites because their immune system is better than ours.” — RFK Jr This is the deadlier version of the racist myth that Black people feel less pain, leading to denied pain meds.
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Michael Metivier @grousehollow.bsky.social · 30/01/2025
Not shocked that RFK has zero self-awareness of how ludicrous, offensive, and ascientific his scientific racism is.
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Sam Wang @samwang.bsky.social · 23/01/2025
NIH funding supports the vast majority of all biomedical research in the United States. Virtually every advance in American medicine and biological science comes from NIH. This is a blow against American science. Call Congress, 202-224-3121.
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Alyson Smith @pedsaly.bsky.social · 23/01/2025
The antidote for despair is action ❤️ * Dial (202) 224-3121 * Enter zip code * Leave voicemail * Say “My name is ___, I’m a constituent in [town]. (If clinician/scientist, say so) “The NIH freeze harms research and patients and must be lifted immediately.” Be brief. Staffers tally all calls. Go! ✅
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Sam Wise Masks @theailingwitch.bsky.social · 24/01/2025
In these days of open fascism, the language we use matters more than ever: Using ableist and sanist language does the fascists jobs for them. After 5 years of disabled people pleading with you to see how ableism and eugenics pave the way to fascism— please listen to us NOW, at least. Do better.
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Chloë Lum @compulsiveobserver.bsky.social · 24/01/2025
Any agreement with RFK je endorses his obsession with and practice of eugenics. You don’t have to hand it to this monster on anything.
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Sighborg @sigh-b0rg.bsky.social · 24/01/2025
Lots of ppl talking about fighting fascism, but when was the last time you offered to deliver food to your disabled neighbors? Drive someone to an appointment? Offered to babysit? Helped someone stay housed by contributing to rent? Donated to mutual aid? The smaller acts of care are important too.
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BK. Titanji @boghuma.bsky.social · 23/01/2025
Given the EO allowing ICE into hospitals this is an important refresher for health professionals. - The legal rights of health care providers and their patients. - How to protect your patients’ rights and your rights as a healthcare provider. www.nilc.org/resources/he...
nilc.org
Know Your Rights: Health Care Providers & Immigration Enforcement
Information for health care providers on how to prepare for and respond to enforcement actions by immigration officials and interactions with law enforcement.
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Matthias Eberl @eberlmat.bsky.social · 24/01/2025
Your regular reminder that the HPV vaccine is one of the greatest achievements of modern medicine and is well on track towards wiping out many forms of cervical cancer and related HPV-induced cancers. Appointing RFK Jr would be an unprecedented disaster for public health in the US and globally.
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Billy Hanlon @bhanlon15.bsky.social · 24/01/2025
Nature: '‘Never seen anything like this’: Trump’s team halts NIH meetings and travel' 'In an unprecedented move, research-grant reviews have been suspended indefinitely at the world’s largest public funder of biomedical research' www.nature.com/articles/d41...
nature.com
‘Never seen anything like this’: Trump’s team halts NIH meetings and travel
In an unprecedented move, research-grant reviews have been suspended indefinitely at the world’s largest public funder of biomedical research.
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Brandy Zadrozny @brandyzadrozny.bsky.social · 24/01/2025
The story behind RFK Jr. in Samoa's measles crisis has never been reported. He wasn't there to spread misinformation about vaccines (though he did). He wanted to study a "natural experiment" of unvaccinated kids. “I can’t imagine anything less ethical or more cruel.” www.nbcnews.com/news/us-news...
nbcnews.com
Experts saw Samoa's plunging vaccination rates as a crisis. RFK Jr. saw an opportunity.
New details show how Robert F. Kennedy Jr., then chair of an anti-vaccine group and now Trump’s pick for health secretary, sought to exploit a deadly vaccine accident.
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Nsikan Akpan @monscience.bsky.social · 24/01/2025
"Employees of the 13 agencies overseen by HHS may only travel to return from assignments or to escape life-threatening situations. That means regular meetings with state and local health officials, training sessions and grant reviews are now on hold." - @melodyschreiber.com via The Guardian
theguardian.com
Travel, grant and funding cuts ‘stifling’ US health agencies in new Trump era
Halts to external communications, publishing reports and reviewing and approving research a ‘dramatic shift’
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Matthew Herper @matthewherper.bsky.social · 23/01/2025
FDA purges material on clinical trial diversity from its site, showing stakes of Trump DEI ban From me and @lizzylawrence.bsky.social www.statnews.com/2025/01/23/f...
statnews.com
FDA purges material on clinical trial diversity from its site, showing stakes of Trump DEI ban
Following the Trump administration's DEI ban, the FDA's move to scrub webpages has ensnared many pages focused on ensuring diversity in drug trials.
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ME/CFS Science @mecfsscience.org · 24/01/2025
1) Good to see an article by Retraction Watch on the problematic Cochrane review on exercise therapy for ME/CFS.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 23/01/2025
“It’s hard to find a word to describe how badly they treated everybody involved in this. It’s been pretty appalling behavior.” @hildabast.bsky.social Please sign and share the petition to withdraw the harmful review: www.change.org/p/cochrane-w...
change.org
Sign the Petition
Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review
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Pride Was A Riot, Sacramento @pridewasariot.bsky.social · 24/01/2025
We have read this official declaration by the Department of State, compared it against our notes, and hate the total number of words they have placed inside the image. The fourteen words they used reads similarly to the fourteen words we very much hate.
The department of state issues a message in white text with a blue background. The text reads 14 words that say, “We must curb mass migration and secure our borders.
- SECRETARY OF STATE MARCO RUBIO”
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Liz Highleyman @lizhighleyman.bsky.social · 24/01/2025
For the first time in six decades, the CDC did not publish its Morbidity and Mortality Weekly Report on Thursday, just one effect of a flurry of executive orders & administrative moves after President Donald Trump’s January 20 inauguration. www.poz.com/article/trum...
poz.com
Trump Muzzles Federal Health Agencies, Withdraws from World Health Organization
CDC and other agencies were told to halt public communications, and the NIH grant process appears to be on hold.
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Beth - Friend for the Long Haul @friend4thelonghaul.bsky.social · 24/01/2025
Hi! I’ll be posting the Spoonie Business Network interest form sometime tomorrow! If you’d like to be listed, keep an eye out! For now it will just be a list of 🥄 business owners so we can all support each other and shop in alignment with our values. ❤️‍🩹
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Dan Diamond @ddiamond.bsky.social · 23/01/2025
Cancer researchers said grants were on hold. Health briefings were abruptly canceled. The CDC’s famed Morbidity and Mortality Weekly Report didn’t publish as scheduled. Our look at the sweeping consequences of the Trump admin’s “pause” of health communications. with @lenasun.bsky.social + pals
washingtonpost.com
Health researchers alarmed as Trump administration pauses travel, communications
The halt has frozen research grants, meetings and key health updates. “Everything is basically in chaos,” said one cancer researcher.
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David Lingenfelter, PhD @dlingenfelter.bsky.social · 24/01/2025
An estimated 44.7 million to 48.0 million Americans (~10%) are affected by long COVID. The model estimates the annual cost per person with long COVID to be between $5,084 and $11,646, mainly from lost productivity. www.cidrap.umn.edu/covid-19/ana...
Here are the main points from the article "Analysis shows significant financial burden of long COVID in US":

1. **Financial Impact**: Managing long COVID cases in the US could cost employers between $1.99 billion and $6.49 billion annually.
2. **Affected Population**: An estimated 44.7 million to 48.0 million Americans are affected by long COVID.
3. **Cost Per Person**: The model estimates the annual cost per person with long COVID to be between $5,084 and $11,646.
4. **Productivity Losses**: About 92.5% to 95.2% of these costs come from productivity losses, with men experiencing higher productivity losses.
5. **Economic Comparison**: The economic burden of long COVID already surpasses that of conditions like carpal tunnel, Lyme disease, and psoriasis.
6. **Future Growth**: The number of people suffering from long COVID is expected to grow as the SARS-CoV-2 virus continues circulating.

https://www.cidrap.umn.edu/covid-19/analysis-shows-significant-financial-burden-long-covid-us
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Anna Holmes @annabookwriter.bsky.social · 23/01/2025
This is exactly it. They want disease and death. Because they believe it clears out the unworthy. A virus doesn’t discriminate. We know that lots of “young and healthy” people are dying mysteriously. (It’s COVID.) There’s even research to suggest athletes are at risk.
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Anna Holmes @annabookwriter.bsky.social · 23/01/2025
Nazis literally called disabled people unworthy of life, and they actively encouraged the spread of disease in concentration camps. That’s what killed Anne Frank. Not a gas chamber. Lest you think the parallels are dramatic, feel free to examine the Trump admin’s response to COVID.
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Anna Holmes @annabookwriter.bsky.social · 23/01/2025
Something disability justice activists have been screaming about for the last five years and some of you may just now be realizing: eugenicists believe disease is good. They believe themselves part of the “superior” race and that disease clears out the poor and unworthy. 1/
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Gabrielle A. Perry, MPH @geauxgabrielle.blacksky.app · 21/01/2025
@imanibarbarin.bsky.social so eloquently stated what I have been too frustrated to put into words for years. The memeifcation of fascism is disgusting. It contributes to its normalization & treats this entire experience as if it is entertainment. It contributes to the TOLERANCE of fascism.
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Imani Barbarin @imanibarbarin.bsky.social · 22/01/2025
people keep tagging me in fuck around and find out content like I haven’t been talking about how pandemics lead to fascism since 2020. The “find out” portion isn’t just for everyone who doesn’t consider themself a liberal—it’s for them too. Haven’t masked in 4 years? FAAFO.
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