The Sick Times
@thesicktimes.org
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A nonprofit news site chronicling the #LongCOVID crisis. Founded by journalists @BetsyLadyzhets.bsky.social & @MilesWGriffis.bsky.social Website: thesicktimes.org Newsletter: thesicktimes.org/newsletter Donate: the-sick-times.fundjournalism.org
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We're a journalist-founded website chronicling the #LongCOVID crisis. Unlike others, we continue to report on the impact of the ongoing COVID-19 pandemic. No denial. No minimizing. No gaslighting.

Here's our editorial team + writers who've contributed to our publication. go.bsky.app/8zDRx6Y
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chromatowski.bsky.social
Invaluable piece, grateful to these patients for organizing.
thesicktimes.org
A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5
A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White." "For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
 Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White
thesicktimes.org
A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5
A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White." "For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
 Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White
thesicktimes.org
🧸 Risk of LC doubled in children following SARS-C0V-2 reinfection

🩸 Researchers may have found a biomarker & treatment target for cognitive dysfunction in LC

💉 Clinical trial recruiting to test the GLP-1 agonist drug Liraglutide for LC

This week's #LongCOVID research updates: bit.ly/48j2kMt
A close up profile of a child wearing a teal KN94 respirator. The text reads, "The Sick Times. Long COVID research updates. Risk of Long COVID doubled in children following SARS-C0V-2 reinfection. Researchers may have found a potential biomarker and treatment target for cognitive dysfunction in Long COVID. A phase 1 clinical trial is recruiting to test the GLP-1 agonist drug Liraglutide for Long COVID." 🧸 A new study that found the risk of Long COVID doubled in children following SARS-C0V-2 reinfection made mainstream headlines this week. As part of the National Institutes of Health (NIH) RECOVER program, researchers assessed health records from over 460,000 participants under the age of 21 across 40 hospital systems and found that the risk of developing Long COVID may be cumulative with each infection. The authors stated the findings aligned with studies on adults and emerging evidence on immune waning post-infection. “The new evidence that reinfections can trigger or worsen this chronic condition suggests that the societal burden is set to grow,” researcher Danilo Buonsenso (who was not involved with the study) wrote in an editorial about it.
🩸 Researchers in Japan may have found a potential biomarker and treatment target for cognitive dysfunction in Long COVID. The small study, published in Brain Communications, assessed 30 participants with the disease and compared them to 80 controls using advanced brain imaging. They discovered a significantly increased density of AMPA receptors in people with Long COVID; these are learning and memory receptors found in the brain and spinal cord. Based on their findings, the researchers suggested future clinical trials on drugs that target AMPA receptors, like perampanel, which is used to treat some types of epilepsy.
💉 A new phase 1 clinical trial is currently recruiting to test the GLP-1 agonist drug Liraglutide for Long COVID, multiple sclerosis, and acute leukemia. The small study plans to recruit 30 participants with a body mass index over 27 at its study site in Chicago, Illinois. Researchers will measure how the drug affects a disease marker called Brain Derived Neurotrophic Factor (BDNF). The NIH’s RECOVER-Treating Long COVID initiative is also planning a clinical trial for Long COVID using another GLP-1 agonist drug (the exact drug has not been officially announced). Study contact: cancerclinicaltrials@bsd.uchicago.edu.
thesicktimes.org
Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. Read more from @marmb.bsky.social: bit.ly/3VVXSf6
Graphic with a zebra-print background, representing EDS awareness. At the center of the image, there is a plus icon for healthcare offset with cartoon representations of the virus SARS-CoV-2. The text reads, “The Sick Times. Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. By Margot Armbruster.” Key points you should know:

Current diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), a common comorbidity of Long COVID, are restrictive. Many people receive a diagnosis of hypermobility spectrum disorder (HSD) instead, but say doctors don’t take HSD as seriously as hEDS.
 
The Ehlers-Danlos Society is developing new hEDS criteria that will be released in 2026. Some experts think the new criteria may enable more patients to get an hEDS diagnosis.
 
Experts are also debating whether hypermobility is primarily a genetic condition or could also be caused by immune reactions to triggers like toxins and viral infections, including SARS-CoV-2. People who are able to show how hypermobility affects their daily activities and interacts with their other conditions may be able to secure disability benefits or accommodations at work.
 
Moving forward, the Ehlers-Danlos Society will continue to incorporate patient feedback and scientific research into the forthcoming criteria.
Reposted by The Sick Times
mileswgriffis.bsky.social
Giveawayyyy!!!
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We’ve hit 10K newsletter subscribers, so we’re giving away five The Sick Times swag packs, including pins, stickers, a patch, and our famous dad hat!

Sign up for our newsletter, or forward a recent newsletter to a friend, then comment “10K GIVEAWAY” to be entered. thesicktimes.org/newsletter/
A purple graphic announcing a 10K GIVEAWAY, featuring a photo of the Sick Times swag pack mentioned above (pins, stickers, a patch, and our famous dad hat!).
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heatherhogan.bsky.social
You fundraiser perks are coming @thesicktimes.org readers! I dropped off four bike crates full of packages at the post office today! (And now I’m gonna take a nap 😅)

Don’t forget to post pics of yourself in your new TST dad hats and tag us!
A blue e-bike with a crate attached to the back. The crate is full of manilla envelopes. A middle age lesbian wearing a khaki hat that reads “THE SICK TIMES” in stitched purple letters.
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betsyladyzhets.bsky.social
We just reached 10,000 (!!!) newsletter subscribers at The Sick Times, and we are doing a giveaway to celebrate! If you already read it, you can enter by forwarding the newsletter to a friend :)
thesicktimes.org
We’ve hit 10K newsletter subscribers, so we’re giving away five The Sick Times swag packs, including pins, stickers, a patch, and our famous dad hat!

Sign up for our newsletter, or forward a recent newsletter to a friend, then comment “10K GIVEAWAY” to be entered. thesicktimes.org/newsletter/
A purple graphic announcing a 10K GIVEAWAY, featuring a photo of the Sick Times swag pack mentioned above (pins, stickers, a patch, and our famous dad hat!).
Reposted by The Sick Times
chromatowski.bsky.social
Great piece on joint hypermobility, which is common among people with Long Covid and related chronic conditions.

I’d add getting diagnosed can lend important insight into how to protect yourself. Better to know in advance than find out the hard way that, say, yoga could really mess you up.
thesicktimes.org
We’ve hit 10K newsletter subscribers, so we’re giving away five The Sick Times swag packs, including pins, stickers, a patch, and our famous dad hat!

Sign up for our newsletter, or forward a recent newsletter to a friend, then comment “10K GIVEAWAY” to be entered. thesicktimes.org/newsletter/
A purple graphic announcing a 10K GIVEAWAY, featuring a photo of the Sick Times swag pack mentioned above (pins, stickers, a patch, and our famous dad hat!).
thesicktimes.org
Since developing Long COVID, Armani Guerra has battled debilitating symptoms, even as he applied for and began his MBA at the University of Michigan’s Ross School of Business. Now, he is organizing the first-ever IACC Case Competition. bit.ly/46Bv0iy
A black and white photo of Armani Guerra wearing a suit and tie. Behind him is a blue-ish tinted photo of the University of Michigan’s Ross School of Business with yellow business doodles on top of it. The text reads, “The Sick Times. Long COVID inspired me to start an IACC case competition at my business school. Here’s how you can get involved. By Armani Guerra.”  I set out to recruit fellow MBA candidates at my business school to develop the first international case competition focused on IACCs like Long COVID, postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis (ME), and more. A task I initially thought would be difficult proved easy, as my peers empathized with my story and saw the daily toll this illness had on me, when I barely made it to class each day.
thesicktimes.org
🩸Thrombotic events doubled since 2020, reinfections increase risk of Long COVID

👃 Olfactory dysfunction occurred in people after SARS-CoV-2 infection

🧘‍♂️ A behavioral trial is assessing a vague “mindfulness intervention” for Long COVID.

This week's #LongCOVID research: bit.ly/4mHhIpj
A scientific drawing shows a blood clot, with red blood cells trapped in a white fibrin mesh. The text reads, "The Sick Times. Long COVID research updates. A large study found thrombotic events doubled since 2020 and that reinfections increased the risk of Long COVID. A study found that olfactory dysfunction, or changes to sense of smell, occurred in people after SARS-CoV-2 infection. A behavioral trial is assessing a vague “mindfulness intervention” for Long COVID." Three slides follow with shortened versions of the text in this caption. Researchers in Spain assessed over 190,000 participants, using data from a public health research network, in a study published in the journal Vaccines. They found that Long COVID prevalence was three to 10 times higher in individuals with three or more reported infections (about 600 people in the dataset) than in those with only one infection. They also found that the number of thrombotic events, including strokes and pulmonary embolisms, in people under 60 doubled from 2020 to 2024, in both people who were and weren’t vaccinated. The authors concluded that policymakers should prevent the spread of SARS-CoV-2 and that healthcare workers should continue wearing protective masks.
A new RECOVER study published in JAMA found that olfactory dysfunction, or changes to sense of smell, occurred in people after SARS-CoV-2 infection, even in those who didn’t report changes. The study included 3,525 participants and formally tested 40 different smells. Researchers found that 66% of previously-infected participants without self-reported change or loss also had olfactory dysfunction, and that dysfunction coincided with cognitive deficits. The authors wrote that their findings corroborated other studies that people underestimate their loss of smell following COVID-19.
A behavioral trial at Columbia University (LONG-CALM) is assessing a vague “mindfulness intervention” for Long COVID. The clinicaltrials.gov page states that participants will view a series of recorded “mindfulness sessions” which were “created by the study team” for eight weeks. The study aims to enroll 400 participants, who will also complete surveys about their symptoms. Mindfulness has been heavily criticized as a treatment for Long COVID by leading researchers and people with the disease. While it can help reduce stress, it has been weaponized against people with chronic illnesses and taken research funding away from trials assessing potential root causes, including immune dysregulation, viral persistence, reactivated viruses, and more.
thesicktimes.org
Literary icon Patricia Lockwood's new novel, Will There Ever Be Another You, is written from inside the mind of someone suffering from neurological symptoms of #LongCOVID.

Read more from @mldavies.bsky.social: bit.ly/3Kt2TcJ
A collage of two images: The cover of of Will There Ever Be Another You, which features a multi-colored floofy cat with bright blue eyes; and a headshot of Patricia Lockwood, a white woman with short brown hair and brown eyes, in a sleeveless dress. Below the collage, the text reads, “The Sick Times. Patricia Lockwood explores the depths of Long COVID in the new novel Will There Ever Be Another You. By Morgan Leigh Davies.” References to COVID-19 and especially to Long COVID, in life and in art, remind people that the pandemic never really ended. But for people like Lockwood and for me, who were both debilitated by Long COVID, forgetting is impossible.

Morgan Leigh Davies

Patricia Lockwood explores the depths of Long COVID in the new novel “Will There Ever Be Another You”
thesicktimes.org
COVID-19 levels continue to decline across much of the U.S. as we proceed down the other side of this summer’s wave. But infectious disease spread remains high, especially in parts of the West Coast & South; plus, cases might be trending further up in parts of the Northeast & Midwest. bit.ly/3KvNYOQ
ID: An orange-ish background and a meter indicating mild-moderate wastewater levels of SARS-CoV-2. The text reads, "COVID-19 levels continue to decline across much of the U.S. as we proceed down the other side of this summer’s wave. But infectious disease spread remains high, especially in parts of the West Coast and South that had the highest peaks this summer; plus, cases might be trending further up in parts of the Northeast and Midwest.

All three major wastewater data sources (the CDC, WastewaterSCAN, and Biobot Analytics) report declines in their national average SARS-CoV-2 levels as of mid-September. Test positivity and emergency department visits from the CDC’s reporting networks are also declining nationwide, as they have for a couple of weeks.

However, two notes of caution. There are signs of disease trends reaching a plateau or perhaps even going back up in parts of the Northeast and Midwest, regions that saw relatively fewer cases over the summer. These are preliminary data, but they are still worth keeping an eye on. And even multiple weeks from the peak of this wave, disease levels remain high in parts of the West Coast and South where it hit the hardest.

In California, for example, the state’s aggregated SARS-CoV-2 wastewater level dropped by 42% between August 28 and September 18 and levels dropped at the vast majority of the state’s 81 testing sites. But the state’s aggregated viral level remained “high” as of September 18, according to the California public health department."

On the third slide, a chart titled, "State summary of California for SARS-CoV-2." The left side of the chart includes text boxes with summary statistics about SARS-CoV-2 in California wastewater. Text reads: "State aggregated summary: Level: High; Trend (compared to 21 days ago): Decrease -42% [-45%, -39%] ID: An orange-ish background and a meter indicating mild-moderate wastewater levels of SARS-CoV-2. The text reads, "COVID-19 levels continue to decline across much of the U.S. as we proceed down the other side of this summer’s wave. But infectious disease spread remains high, especially in parts of the West Coast and South that had the highest peaks this summer; plus, cases might be trending further up in parts of the Northeast and Midwest.

All three major wastewater data sources (the CDC, WastewaterSCAN, and Biobot Analytics) report declines in their national average SARS-CoV-2 levels as of mid-September. Test positivity and emergency department visits from the CDC’s reporting networks are also declining nationwide, as they have for a couple of weeks.

However, two notes of caution. There are signs of disease trends reaching a plateau or perhaps even going back up in parts of the Northeast and Midwest, regions that saw relatively fewer cases over the summer. These are preliminary data, but they are still worth keeping an eye on. And even multiple weeks from the peak of this wave, disease levels remain high in parts of the West Coast and South where it hit the hardest.

In California, for example, the state’s aggregated SARS-CoV-2 wastewater level dropped by 42% between August 28 and September 18 and levels dropped at the vast majority of the state’s 81 testing sites. But the state’s aggregated viral level remained “high” as of September 18, according to the California public health department."

On the third slide, a chart titled, "State summary of California for SARS-CoV-2." The left side of the chart includes text boxes with summary statistics about SARS-CoV-2 in California wastewater. Text reads: "State aggregated summary: Level: High; Trend (compared to 21 days ago): Decrease -42% [-45%, -39%] ID: An orange-ish background and a meter indicating mild-moderate wastewater levels of SARS-CoV-2. The text reads, "COVID-19 levels continue to decline across much of the U.S. as we proceed down the other side of this summer’s wave. But infectious disease spread remains high, especially in parts of the West Coast and South that had the highest peaks this summer; plus, cases might be trending further up in parts of the Northeast and Midwest.

All three major wastewater data sources (the CDC, WastewaterSCAN, and Biobot Analytics) report declines in their national average SARS-CoV-2 levels as of mid-September. Test positivity and emergency department visits from the CDC’s reporting networks are also declining nationwide, as they have for a couple of weeks.

However, two notes of caution. There are signs of disease trends reaching a plateau or perhaps even going back up in parts of the Northeast and Midwest, regions that saw relatively fewer cases over the summer. These are preliminary data, but they are still worth keeping an eye on. And even multiple weeks from the peak of this wave, disease levels remain high in parts of the West Coast and South where it hit the hardest.

In California, for example, the state’s aggregated SARS-CoV-2 wastewater level dropped by 42% between August 28 and September 18 and levels dropped at the vast majority of the state’s 81 testing sites. But the state’s aggregated viral level remained “high” as of September 18, according to the California public health department."

On the third slide, a chart titled, "State summary of California for SARS-CoV-2." The left side of the chart includes text boxes with summary statistics about SARS-CoV-2 in California wastewater. Text reads: "State aggregated summary: Level: High; Trend (compared to 21 days ago): Decrease -42% [-45%, -39%]
thesicktimes.org
It can feel lonely navigating the #LongCOVID crisis. We report on this common, life-changing disease that affects over 400 million people worldwide.

Sign up for our newsletter and join others who want fact-based news without COVID-19 denial, minimizing, or gaslighting. thesicktimes.org/newsletter/
A purple background reads, “The Sick Times newsletter. Reporting on the Long COVID crisis. Long COVID research updates. COVID-19 trends. Personal essays from disabled writers. Health and science expert Q&As. thesicktimes.org/newsletter.” At the top is an illustration of a Caladrius delivering some mail. On the right is a black and white photo of a woman browsing the internet on her laptop.
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Many thanks C.H. 🙏🏼
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chromatowski.bsky.social
Really important topic.

It’s a great day to donate to @thesicktimes.org. Nowhere else is gathering this critical information for people who have Long Covid—or anyone who might get it, which a new NIH incidence study says is at least 1 in 20 people who get Covid.
thesicktimes.org
#LongCOVID is not functional neurological disorder (FND), but some patients are getting diagnosed with it.

Here’s @davetuller1.bsky.social on what to do if it happens to you: bit.ly/4mxAyiB
 Photo of an art piece: a white object, shaped like an egg, with painted representations of the virus SARS-CoV-2 across its surface. The text reads, "The Sick Times. Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you. By David Tuller." What people with Long COVID should do if they receive an FND diagnosis: 

Ask about the basis for the diagnosis. A clinician may render an FND diagnosis when medical tests are negative. That means people with Long COVID and other conditions that lack validated biomarkers might be particularly vulnerable to misdiagnosis. However, FND is not supposed to be a diagnosis of exclusion — that is, a diagnosis given solely because nothing else has been found. 

Don’t automatically accept the diagnosis as final. “Don’t be afraid to question it if it doesn’t feel like the diagnosis fits your symptoms,” said Hargrave. Davenport echoed that advice. “Don’t take it for a definitive answer,” he said. “It’s okay to seek another opinion.” 
What people with Long COVID should do if they receive an FND diagnosis

Keep a full account of your medical care, said Joffe, the Australian expert. “Carefully document all neurological interactions,” he said. “Keep copies of the letters written and all the results. That’s crucial. Not infrequently, I find that something has been missed or overlooked in my patients. Having the original letters and studies is very illuminating.”

Be aware that having an existing FND diagnosis in medical charts might influence the judgment of subsequent clinicians, and take steps to address this issue. David Putrino recommends working with your primary care provider “to have that diagnosis removed from your medical records.”

"Don’t be afraid to question it if it doesn’t feel like the diagnosis fits your symptoms. Don’t take it for a definitive answer. It’s okay to seek another opinion." - Todd Davenport, Professor of physical therapy at the University of the Pacific in Stockton, California