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
In this episode of Still Here: Betsy Ladyzhets and Miles Griffis recap the Keystone Symposia. Plus, a recap of a new NIH RECOVER preprint about reinfections. The post Still Here, August 22: Links and transcript first appeared on The Sick Times.| The Sick Times
Argentina is facing an invisible Long COVID crisis, marked by a lack of clinics, minimal media attention, no disability insurance to help people with the disease cope with their inability to work, and only a couple of Long COVID studies — all amid a 48% cut to the national health budget under President Javier Milei. The post The crisis is “expasperating”: Long COVID compounds economic hardship in Argentina first appeared on The Sick Times.| The Sick Times
Last week, leading Long COVID and infection-association chronic condition (IACC) researchers met in Santa Fe, New Mexico, for the field’s second Keystone Symposia meeting. They were joined by advocates, clinicians, and representatives from pharmaceutical companies for a three-day conference focused on sharing new research and building consensus. The post “The field is coming of age”: Long COVID researchers gather in Santa Fe to foster collaboration first appeared on The Sick Times.| The Sick Times
The U.S.’s summer COVID-19 surge continues, with cases increasing across all regions through early August, driven by travel and gatherings as well as the variant XFG. Despite the obvious increases in COVID-19 spread, the CDC’s wastewater dashboard — which recently updated its methodology — downplays current viral activity levels as “low.” The post National COVID-19 trends, August 19 first appeared on The Sick Times.| The Sick Times
A new preprint from the National Institutes of Health (NIH) RECOVER study found that COVID reinfections may increase the risk of Long COVID by about 35%. The post Research updates, August 19 first appeared on The Sick Times.| The Sick Times
In this episode of Still Here: A two-way between Miles Griffis and Betsy Ladyzhets comparing and contrasting Long COVID and ME clinical trial designs for drugs targeting immune dysregulation and viral persistence. The post Still Here, August 19: Links and transcript first appeared on The Sick Times.| The Sick Times
My life before Long COVID was very busy. I was in college, partying a lot and working as an artist and activist. I didn’t make time to rest, and it caused me to burn out. I tried to do everything at once and became overwhelmed. The post Long COVID taught me to slow down and stop trying to meet able-bodied benchmarks first appeared on The Sick Times.| The Sick Times
While three early clinical trials of these drugs did not find they led to health improvements for participants, further trials are getting more intentional in targeting viral persistence. The post No “easy home runs”: Early Long COVID trials of Paxlovid and monoclonal antibodies failed, but the treatments still have potential first appeared on The Sick Times.| The Sick Times
People with myalgic encephalomyelitis (ME) have significant genetic differences in their DNA, according to a preprint shared this week from the DecodeME study. The post Research updates, August 12 first appeared on The Sick Times.| The Sick Times
COVID-19 rates continue to take off across the U.S. as our summer surge hits every region. All metrics report substantial increases in SARS-CoV-2 spread in recent weeks — and the latest data are from early August, meaning levels may be much higher now than our reported numbers. The post National COVID-19 trends, August 12 first appeared on The Sick Times.| The Sick Times
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
In February, the National Institutes of Health (NIH) published a controversial paper that aimed to characterize myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). The study, published in Nature Communications, took eight years and cost $8 million. Participants flew in from all over the country and went through intense testing on NIH’s Bethesda,| The Sick Times - Chronicling the Long Covid crisis
My infection months before came and went mildly, but it soon became obvious that my sluggishness and pain were not caused by caffeine, thesis stress, or hangovers. It was Long COVID.| 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 relentlessness of the pandemic, now in its fifth year, is drawn out by the persistence of its denial. The federal emergency ended, Covid-19 precautions have been lifted for years, and though many people are “back to normal,” over 20,000 people in the United States died of Covid-19 since the beginning of 2024. Millions who avoided death are nonetheless still living with Long Covid, and this number grows each month. We are still in crisis. This is alarming, but it’s no reason to aband...| The Sick Times - Chronicling the Long Covid crisis
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
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
