Preliminary meetings are occurring amid the ongoing government shutdown, while some advocates call for Health Secretary Kennedy’s removal The post It’s been a month. And we still don’t know much about Kennedy’s Long COVID consortium. first appeared on The Sick Times.| The Sick Times
The U.S. is still largely without COVID-19 and other infectious disease data as the government shutdown continues. As Congress has repeatedly failed to pass a resolution that would fund federal agencies, the shutdown — and data delays — are likely to go into a fourth week, if not longer. This could be incredibly harmful as the U.S. heads into colder weather and the disease outbreaks that typically follow. The post National COVID-19 trends, October 21 first appeared on The Sick Times.| The Sick Times
A clinical trial for the anti-inflammatory drug Colchicine did not find the drug effective for Long COVID, according to a new study published in JAMA Internal Medicine. The randomized trial included 346 participants in India who took at least 0.5 milligrams once or twice per day, or a placebo, for 52 weeks. The post Research updates, October 21 first appeared on The Sick Times.| The Sick Times
Some people with Long COVID and the providers who were treating them wondered if nicotine, delivered by a mechanism other than cigarettes, might help with the chronic disease. For the next several years, white papers used anecdotal evidence to expand on that initial hypothesis. The post Nicotine patches help relieve symptoms in some people with Long COVID. Can the science behind it lead to future therapies? first appeared on The Sick Times.| The Sick Times
While some anti-mask policies have failed — a win for workers — there is a larger effort to ban masks in the U.S. on state and local levels. And more businesses may attempt to ban masks in the workplace even though these policies may violate laws that protect masks as accessibility devices. The Sick Times spoke with five workers affected by anti-mask attitudes in their workplaces, as well as organizers and a disability law expert, about how to push back against these policies. The post De...| The Sick Times
A large electronic health records study found SARS-CoV-2 infection is associated with elevated risks of Human Papillomavirus (HPV)-related cancer. The post Research updates, October 14 first appeared on The Sick Times.| The Sick Times
COVID-19 and other infectious disease data continue to be very limited while the U.S. government is shut down. Last week, the CDC updated a couple of national COVID-19 metrics; this week, the agency didn’t even update that national trends page. And even when Congress reaches a budget deal, infectious disease surveillance will remain under threat due to recent CDC layoffs. The post National COVID-19 trends, October 14 first appeared on The Sick Times.| The Sick Times
We are a group of 53 individuals with Long COVID from across the U.S. In 2023, we joined a Long COVID clinical trial for Vyvgart (efgartigimod), a drug approved by the Food and Drug Administration (FDA) for the autoimmune disease myasthenia gravis. Without warning, the trial was canceled in June 2024. The post 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. first appeared on The Sick Times.| The Sick Times
On October 31, at the University of Michigan’s Ross School of Business in Ann Arbor, top graduate students will compete to develop innovative business solutions for the IACC community. This event, which will be open to the public, will include testimonials from people with Long COVID and an expert panel, as well as the competition itself, which will offer $10,000 in prizes.| The Sick Times - Chronicling the Long Covid crisis
In her new novel Will There Ever Be Another You, which chronicles her experience of the COVID-19 pandemic, literary icon Patricia Lockwood writes, “‘Please don’t write about it,’ people were already begging each other, so she kept the notebook secret.”| The Sick Times - Chronicling the Long Covid crisis
In May, The Sick Times published an op-ed about a novel bill in Illinois that would enshrine the right to wear medical masks into that state's law. The op-ed's author, a writer and advocate who was part of the coalition behind the bill, wrote that advocates in several other states had worked on similar legislation. We received this letter from a reader in California, sharing concerns about the right-to-mask bill currently pending in that state.| The Sick Times - Chronicling the Long Covid crisis
Here’s what keeps me up at night: If some people are finding relief, why aren’t we scaling what might work? And why aren’t we trying multiple interventions at the same time?| The Sick Times - Chronicling the Long Covid crisis
This spring, a record-breaking heat wave swept through Brazil, triggering fires, exacerbating drought, and testing the country’s energy grid. Fernando Santos, 33, who had been living with Long Covid and postural orthostatic tachycardia syndrome (POTS) since June 2021 and had made some progress in his recovery, began to decline when the heat arrived in Rio de Janeiro. Santos developed chest pain and fatigue so severe that he had to temporarily withdraw from his classes, where he was studying...| The Sick Times
There’s a story in Greek mythology where Orpheus, a gifted poet and musician, travels to the underworld to rescue his newly wedded wife, Eurydice, who died after being bitten by a snake. They are both allowed to leave Hades under one condition: Eurydice must walk behind Orpheus, and he must not turn and look back| The Sick Times - Chronicling the Long Covid crisis
Current diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), a common comorbidity of Long COVID, are restrictive. The Ehlers-Danlos Society is developing new hEDS criteria that will be released in 2026. The post Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. first appeared on The Sick Times.| The Sick Times
COVID-19 data are limited this week due to the government shutdown, now the second time that vital disease surveillance has been interrupted since Trump took office in January. The CDC has not updated the majority of its COVID-19 and respiratory disease data pages since September 26. The post National COVID-19 trends, October 7 first appeared on The Sick Times.| The Sick Times
For decades, Cochrane — formerly called the Cochrane Collaboration — has been known internationally for its systematic reviews of medical treatments and interventions. Now the U.K.-based charity is under fire for its clumsy handling of a thorny issue: the status of a flawed 2019 review of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).| The Sick Times - Chronicling the Long Covid crisis
To learn more about the disability insurance system, Betsy Ladyzhets spoke to Barbara Comerford, a long-time disability lawyer based in New Jersey who specializes in these cases. Comerford has represented people with myalgic encephalomyelitis (ME), for more than 30 years, including high-profile cases like that of journalist Brian Vastag.| The Sick Times - Chronicling the Long Covid crisis
As scientists across the country face confusion and uncertainty following drastic changes at the National Institutes of Health (NIH) under President Donald Trump, the agency’s flagship Long COVID research program is continuing its existing work as usual. But future studies could be delayed or interrupted and prospects for additional funding are unclear under Trump’s leadership.| The Sick Times - Chronicling the Long Covid crisis
The U.S. government has stopped updating some of its public COVID-19 data, as part of a “pause” to public federal health communications under President Donald Trump. While federal officials have not formally announced any details, the Centers for Disease Control and Prevention (CDC) has missed scheduled updates to some infectious disease dashboards this week. A few crucial data pages, including the agency’s wastewater surveillance dashboard, were updated despite the pause. But other mis...| The Sick Times - Chronicling the Long Covid crisis
Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. The Sick Times co-founder and managing editor Betsy Ladyzhets spoke with McCorkell in an exit interview. She reflected on her time collaborating on formative Long COVID studies, advocating for federal funding, developing new patient-led initiatives, and more.| The Sick Times - Chronicling the Long Covid crisis
Last week, Sen. Bernie Sanders introduced the Long Covid Research Moonshot Act of 2024. The bill allocates $1 billion in federal funding per year for the next 10 years for Long Covid research, treatments, public health education, and expanded healthcare. A draft version of the Act received thousands of comments from the Long Covid community in April. The official legislation, which would establish a new program at the National Institutes of Health (NIH), is co-sponsored by Democratic Sens. Ta...| The Sick Times - Chronicling the Long Covid crisis
Now it’s been four years. And this thing — this invisible thing — is still here. Every morning is a gamble. Will I wake up with energy? Or will my legs feel like stone? Will I be able to focus? Or will my thoughts float around like lint in the air, impossible to catch?| The Sick Times - Chronicling the Long Covid crisis
Last fall, I went on a trip to Ireland, traveling thousands of miles from my home in Illinois. I encountered many obstacles on my journey, but in the end was able to balance my energy and disability with some enjoyable ventures. I’m happy to report that I achieved my goal.| The Sick Times - Chronicling the Long Covid crisis
What do you call a system that doesn’t believe you’re sick until you’re dying? While emergency clinicians are trained to handle acute medical situations, many lack even a basic understanding of Long COVID and related diseases, such as myalgic encephalomyelitis (ME).| The Sick Times - Chronicling the Long Covid crisis
The field of Long Covid research reached a major milestone last week with the release of a new report from the National Academies of Sciences, Engineering, and Medicine (NASEM) outlining a working definition of the disease.| The Sick Times - Chronicling the Long Covid crisis
Advocates pushed back against threatened funding cuts and won continued support for Long COVID work in the Minnesota legislature’s final 2026–27 budget.| The Sick Times - Chronicling the Long Covid crisis
Cuts could end Long COVID research, communications, and grants in Minnesota, which has been a leader in state-level public health responses to the crisis.| The Sick Times - Chronicling the Long Covid crisis
Several government resources about accommodations for people with Long COVID 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 Americans with Disabilities Act (ADA) for people with Long COVID and their employers.| The Sick Times - Chronicling the Long Covid crisis
A key source of U.S. Long COVID data is now offline following a purge of information related to sexual orientation and gender identity ordered by President Donald Trump’s administration. The Household Pulse Survey, a data collection effort by the U.S. Census and Centers for Disease Control and Prevention (CDC), is among many CDC datasets and pages that became unavailable on Friday.| The Sick Times - Chronicling the Long Covid crisis
The last thing I thought before I smashed, face first, into the New York City sidewalk, was, Dang, my wife's going to want me to start taking my cane with me everywhere I go. But mostly, I was worried one of my neighbors would watch me tumble over and go limp.| The Sick Times - Chronicling the Long Covid crisis
Despite its global reach, Long Covid is widely underreported in Africa due to a lack of awareness of the condition, inadequate clinical data, and limited access to health care. The impact on the African continent remains largely obscured by a veil of silence and neglect. In a region already burdened by health challenges, including infectious diseases, poverty, and limited healthcare resources, the added strain of sequelae of SARS-CoV-2 infection magnifies these existing vulnerabilities.| The Sick Times - Chronicling the Long Covid crisis
Last week, the Centers for Disease Control and Prevention (CDC) released new data on deaths caused by Long Covid, reporting that more than 5,000 Americans have died from this disease since 2020. The CDC’s numbers most likely represent significant undercounts of Long Covid-related deaths, experts say, highlighting a need for better reporting standards and education for the people who fill out death certificates.| The Sick Times - Chronicling the Long Covid crisis
