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Non-profit news site chronicling the #LongCovid crisis. Founded by @betsyladyzhets and @mileswgriffis . Donate:

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@thesicktimes
The Sick Times
7 months
Welcome to The Sick Times๐Ÿ•Š๏ธ We're an independent news site founded by journalists @betsyladyzhets and @mileswgriffis . We report on the Long Covid crisis, Covid-19, & infection-associated illnesses. Sign up for our newsletter, full site to come in 2024!
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@thesicktimes
The Sick Times
6 months
NEW: More than 80 prominent researchers, clinicians, health advocates, and organizations are calling on President Biden to urgently address the #LongCovid crisis with annual funding in the billions, via a public letter published this morning. Read more:
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@thesicktimes
The Sick Times
1 month
The Sick Times is excited to announce we have received an award of $250,000 from the biotech giving fund Kanro. This grant will fund our general operations over the next 18 months, enabling our expansion to a larger newsroom. Read more:
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@thesicktimes
The Sick Times
3 months
โ€œI have no degree or experience doing any work similar to this,โ€ mask bloc organizer N. says. โ€œWhy the fuck are we being more effective and doing more education [than leadership in institutions]?โ€ By @brittashoot :
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@thesicktimes
The Sick Times
5 months
Good morning! This is @betsyladyzhets , getting started with livetweeting today's hearing at the Senate HELP committee about #LongCovid . Follow along in this thread for updates throughout the event.
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@thesicktimes
The Sick Times
5 months
๐Ÿ“ข BREAKING: There will be a full U.S. Senate HELP Committee meeting on Long Covid, January 18th at 10am EST. Look for more details on the hearing and coverage from us.
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@thesicktimes
The Sick Times
2 months
Sen. Bernie Sanders has proposed draft legislation that would allocate one billion dollars a year for the next 10 years to #LongCovid research. Read what advocates are saying about the proposal and how you can share feedback with Sanders' office:
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@thesicktimes
The Sick Times
5 months
The second scientist speaker is @zalaly . He discussed the high burden of Long Covid: "The burden of disease and disability from LC is on par with the burden of cancer and heart disease." And people who are "unscathed" from a first infection may get it from reinfection.
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@thesicktimes
The Sick Times
5 months
@betsyladyzhets Highlights from Sen. Sanders' opening remarks: - โ€œToday, weโ€™re talking about an issue that has not gotten the attention that it deserves... and that is the issue of Long Covid." - There's a "full house" in the Senate with an overflow room and many watching online.
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The Sick Times
5 months
Sen. Tim Kaine talked about his own experiences with Long Covid and the experiences of two other senators, Sen. Inhofe and Sen. Young. "U.S. senators get believed," he said, while many other pwLC -- women, minorities, younger people -- may be dismissed.
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@thesicktimes
The Sick Times
5 months
People of color, those with lower incomes, and others with marginalized identities may be similarly less likely to have medical documentation of Long Covid symptoms, leading to inaccurate death certificates if they pass away. Link โžก๏ธ
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The Sick Times
5 months
@betsyladyzhets Sen. Sanders addressing the #LongCovid community: "We hear what youโ€™re experiencingโ€ฆ we take it seriously, we think we as a Congress have not done anywhere near enough and weโ€™re hoping to turn that around."
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@thesicktimes
The Sick Times
5 months
To start off the new year, @betsyladyzhets spoke with @EricTopol for an in-depth interview about the state of Long Covid clinical trials, the Biden Administration's lack of response to the crisis, and more! Read the full interview hereโฌ‡๏ธ
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@thesicktimes
The Sick Times
5 months
The Senate hearing was interrupted by protestors who came to the front of the chamber with banners, chanting, "Long Covid is a national emergency!" They were quickly escorted off by security. (Focused on the hearing for now but will cover this more later!
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@thesicktimes
The Sick Times
5 months
"We are living through the largest mass disabling event in modern history," @AngelaMSWinCA said, comparing the Long Covid crisis to the emergence of AIDS in its major health impacts.
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@thesicktimes
The Sick Times
25 days
Thanks to our recent grant, we are now 1) accepting pitches for news stories and essays/commentary pieces with a larger freelance budget, and 2) hiring for two part-time roles. More info:
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@thesicktimes
The Sick Times
4 months
"The reality is thatโ€ฆnurses are leaving the bedside because conditions have been dangerous & because their health and safety has been sidelined by their employers.โ€ Read our latest feature by @fi_lowenstein on the HICPAC draft & nurses with #LongCovid .
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@thesicktimes
The Sick Times
5 months
As the scientists answered a question about directions for further research, audience member @joaquinlife held up a sign reading, "MASKS SAVE LIVES" for the camera. Security appeared to ask him to take the sign down.
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@thesicktimes
The Sick Times
5 months
Sen. Ed Markey referenced statistics on Long Covid prevalence (22%-38% of people who have Covid-19, per one study) and emphasized that people should mask and get vaccinated to reduce their risk. Notably, Markey and the other senators are largely unmasked at this hearing.
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@thesicktimes
The Sick Times
5 months
. @zalaly also discussed the need to prevent new infections: "The best way to prevent Long Covid is to prevent COVID in the first place." And the urgent need for clinical trials: "We developed vaccines at warp speed, weโ€™re developing treatments for LC at snail speed."
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@thesicktimes
The Sick Times
6 months
"I have written about many topics throughout my career. None have affected me more than long Covid. None have more profoundly changed my view about what journalism can achieve." Wise words from @edyong209 , a bright light guiding us through the abyss.
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@thesicktimes
The Sick Times
5 months
Sen. Hickenlooper also asked about preparing for future pandemics. In response, @zalaly talked about the need to improve air ventilation and filtration: We have codes to make buildings earthquake-proof, why not have codes to make them resistant to airborne pathogens?
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@thesicktimes
The Sick Times
5 months
Sen. Sanders also acknowledged 200+ symptoms from Long Covid, how it impacts people with mild to severe cases, potential risk going up with future infections, economic ramifications, medical gaslighting, and challenges with accessing high-quality care.
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@thesicktimes
The Sick Times
5 months
The final scientist speaker is Dr. Tiffany Walker, who works at a Long Covid clinic at Emory University. She discussed disabling impacts of LC: many pwLC are un or underemployed, and many have ME/CFS and dysautonomia, which are debilitating and lifelong conditions.
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5 months
Sen. Roger Marshall said he's had personal experience of a loved one with #LongCovid and wants to see more action from the CDC. "Iโ€™m frustrated that our CDC seems to be more focused on, I don't know, vaccines, rather than treatments for Long Covid."
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@thesicktimes
The Sick Times
5 months
@AngelaMSWinCA Second pwLC speaker is Rachel Beale. She spoke about her own symptoms, challenges with obtaining disability benefits, how her family now plans around her energy envelope. โ€œComing to testify today has been a huge effort, and I know that I will need several days to recover.โ€
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@thesicktimes
The Sick Times
5 months
Sen. Sanders asked the speakers about their experiences with the medical community. @AngelaMSWinCA said medical education is really needed, especially for primary care doctors who are overwhelmed. Rachel Beale similarly said many doctors aren't aware of Long Covid.
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@thesicktimes
The Sick Times
5 months
In his opening remarks, Sen. Bill Cassidy referenced criticism of NIH's RECOVER program. Congress needs to reauthorize PAHPA and provide more funding for research, he said.
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@thesicktimes
The Sick Times
5 months
First pwLC speaker was @AngelaMSWinCA . Her remarks included descriptions of her symptoms, challenges with health insurance and disability benefits (including potential ramifications of the Medicaid unwinding), and reference to the #LongCovidMoonshot .
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@thesicktimes
The Sick Times
5 months
Sen. Lisa Murkowski asked about improving Long Covid care in rural areas. Dr. Harkins (now in a mask) responded, talking about the potential for telehealth, training primary care doctors via programs like Project ECHO, and directing patients to regional multidisciplinary centers.
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@thesicktimes
The Sick Times
5 months
The third speaker is Nicole Heim, parent to a 16-year-old with Long Covid. #LongCovid stripped away my daughterโ€™s life as she knew it," she said, discussing her daughter's symptoms, mental health challenges, and extensive treatment regimen.
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The Sick Times
5 months
Sen. Cassidy asked about telemedicine options for Long Covid, as well as post-exertional malaise. @AngelaMSWinCA responded to the PEM question, citing evidence that PEM is a downstream impact of malfunctioning energy systems, and got some applause from the room's audience.
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@thesicktimes
The Sick Times
5 months
Sen. Patty Murray asked speakers about the intersection of women's health and Long Covid, as well as access to healthcare. "We really need to disseminate basic diagnostic and screening tools to primary care physicians," @AngelaMSWinCA said in response.
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@thesicktimes
The Sick Times
5 months
Sen. Kaine also asked Rachel Beale about her experience applying for SSDI. She described the process as a black box, saying she doesn't know why her application has been denied. The senator referenced issues with access to testing impacting diagnosis as well.
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@thesicktimes
The Sick Times
5 months
Heim also discussed participating in research (for example, her daughter was recently tested for microclots), and acknowledged that many children with Long Covid may not have the same access to the medical and research systems.
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@thesicktimes
The Sick Times
5 months
Sen. Lisa Murkowski asked about mental health challenges. From Rachel Beale's response: "Long Covid is causing my anxiety and depression, so if I'm not treating the LC as it needs to be treated, the anxiety and depression will continue."
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@thesicktimes
The Sick Times
5 months
The hearing is now concluded. Sen. Hickenlooper noted that 37 stakeholder groups also entered statements for the record about their priorities for addressing #LongCovid . If you'd like to share comments for our recap article, please reach out here or to betsy @thesicktimes .org!
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@thesicktimes
The Sick Times
5 months
Dr. Walker expressed criticism of the RECOVER initiative, including: - Observational study slated to end in 2025, when this is a potentially life-long disease - Funding for clinical trials is siloed through RECOVER, "stifling opportunities for further innovation"
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@thesicktimes
The Sick Times
5 months
Sen. Markey also asked about connections between Long Covid and other infection-associated conditions. @AngelaMSWinCA responded calling for more research funding, "The U.S. could really be the leader for a cure of these kinds of conditions." Markey expressed agreement with this.
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@thesicktimes
The Sick Times
6 months
"HIV may increase the risk of Long Covid. Why aren't major advocacy groups addressing it?" Link โžก๏ธ
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@thesicktimes
The Sick Times
5 months
Dr. Harkins emphasized three top priorities to help people with Long Covid: 1) Continued investment in research, especially clinical trials 2) Making access to clinical care easier, specifically with multidisciplinary clinics 3) Prevent new infections that can lead to LC
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@thesicktimes
The Sick Times
5 months
Sen. John Hickenlooper asked the speakers their priorities for research. @AngelaMSWinCA referenced historical precedent: the priority should be "grounding the current Long Covid research in the historical infection-associated disease research."
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@thesicktimes
The Sick Times
5 months
Sen. Tina Smith asked about challenges with health insurance coverage, as there are no FDA-approved treatments for Long Covid. @AngelaMSWinCA and Rachel Beale both discussed the time and effort that it can take to get insurance approvals, waiting while symptoms continue.
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@thesicktimes
The Sick Times
29 days
"Disabled love is spun from respect and mutuality, not reciprocity. Disabled love isnโ€™t about keeping score or competing to give the most. Disabled love doesnโ€™t demand consistency or perfection. Disabled love asks us to love ourselves first and foremost."
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@thesicktimes
The Sick Times
5 months
Just adding that the protestors who interrupted the hearing appear to be members of @LongCovidAP , who were escorted out. (I didn't get a chance to save the video in real-time, but hopefully it will be possible to re-watch the livestream later.)
@thesicktimes
The Sick Times
5 months
The Senate hearing was interrupted by protestors who came to the front of the chamber with banners, chanting, "Long Covid is a national emergency!" They were quickly escorted off by security. (Focused on the hearing for now but will cover this more later!
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@thesicktimes
The Sick Times
5 months
Sen. Marshall also talked a bit about Covid's origins, then asked speaker Nicole Heim what actions she would like to see the CDC take. "I just want them to acknowledge that it's real," she said.
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@thesicktimes
The Sick Times
5 months
Sen. Hassan also asked Nicole Heim how she'd like to see improved care for children with Long Covid. She suggested primary care doctors, school counselors, and other professionals should have access to a standard LC survey, eg. to screen children who miss a lot of school.
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@thesicktimes
The Sick Times
5 months
In response to Sen. Sanders' question about research directions, the speakers talked about what we already know about potential biomarkers and how Long Covid impacts different organ systems. They emphasized the need for clinical trials and for more government funding.
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@thesicktimes
The Sick Times
5 months
The third scientist speaker is Dr. Charisse Madlock-Brown, health informatics professor at the University of Iowa and researcher on NIH's National COVID Cohort Collaborative project (). She discussed challenges and disparities with diagnosing Long Covid.
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@thesicktimes
The Sick Times
5 months
Sen. Mike Braun asked the speakers about high costs and dysfunction in the healthcare system. @AngelaMSWinCA mentioned spending $$ out of pocket for compound medicines, while speakers Beale and Hein discussed traveling to appointments and coordinating among multiple doctors.
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@thesicktimes
The Sick Times
5 months
Sen. Maggie Hassan referenced the work of New Hampshire's one Long Covid clinic, and asked speakers more questions about their challenges with out-of-pocket costs, care coordination, and travel to appointments.
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@thesicktimes
The Sick Times
5 months
On Friday, the ME advocacy group #MEAction shared that their co-founder, Beth Mazur, passed away after living with myalgic encephalomyelitis (ME) for 15 years. Link:
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@thesicktimes
The Sick Times
5 months
The patient panel has concluded, and we're now starting the scientist panel. First up is Dr. Michelle Harkins, pulmonologist and professor at the University of New Mexico, speaking about her experience seeing people with Covid-19 and Long Covid.
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@thesicktimes
The Sick Times
5 months
Dr. Madlock-Brown advocated for a #LongCovidMoonshot which would support clinical trials for new treatments, as well as research using programs like N3C to continue investigating different symptoms, patient groups, and other key questions.
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@thesicktimes
The Sick Times
5 months
@zalaly And Sen. Cassidy asked about treating people who have post-exertional malaise. How do docs differentiate between those for whom exercise might/might not help? Dr. Harkins responded that talking to patients and understanding their day-to-day limitations is important.
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@thesicktimes
The Sick Times
5 months
Sen. Marshall also asked about using off-label medicines for Long Covid. Dr. Walker gave the example of low-dose naltrexone, which some people with Long Covid and ME/CFS find reduces symptoms. "We need medications that will cause some relief" as research continues, she said.
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@thesicktimes
The Sick Times
5 months
Beale said treatments should be a priority for research, while Heim said that a priority should be disseminating the information we already have, about how certain drugs and strategies can help alleviate symptoms.
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@thesicktimes
The Sick Times
5 months
@statnews @MuckRock @zalaly Sen. Roger Marshall followed up on RECOVER criticism. The program has been focused on "risk factors and praying about it," rather than diagnosis and treatment, he said. He would like to consider giving future funding to other agencies and private research orgs, rather than NIH.
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@thesicktimes
The Sick Times
5 months
The discussion of healthcare access ties into HHS's grants for Long Covid clinics, which specifically aim to educate primary care doctors. Though advocates say more support & guidance for health organizations is needed. See our coverage here:
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@thesicktimes
The Sick Times
6 months
"Media coverage of the humanitarian crisis has failed to acknowledge the ongoing pandemic and, in turn, minimizes the scope of the violence." Link:
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@thesicktimes
The Sick Times
7 months
News from HHS: The agency has established an Advisory Committee on #LongCovid that will provide input on the federal government's response to this crisis. HHS is specifically looking for people with lived experience to join, says assistant health secretary Rachel Levine. (1/2)
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@thesicktimes
The Sick Times
5 months
@zalaly Sen. Cassidy asked about Project ECHO (a program for educating primary care docs) and how doctors may learn from research into potential pathobiologies of Long Covid, such as immune system dysregulation. @zalaly says the research is often "translated poorly" to clinical settings.
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@thesicktimes
The Sick Times
5 months
@statnews @MuckRock Dr. Harkins responded that RECOVER's primary goal is observational, following patients and understanding mechanisms; acknowledged that clinical trials are moving slowly. @zalaly said NIH needs a broader program or even institute focused on all infection-associated diseases.
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@thesicktimes
The Sick Times
6 months
Project N95 ending mask store, free distributions by the end of 2023 by @betsyladyzhets "Mask blocs across the country, along with other mutual aid and advocacy groups, continue to distribute masks to their communities. โ€œAnyone can start a mask bloc, and itโ€™s not too late."
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@thesicktimes
The Sick Times
5 months
Sen. John Hickenlooper asked about using AI in Long Covid research. While the speakers agreed there is potential, they cautioned about the challenges with electronic health record systems, which are decentralized. "We need a better investment in the data," said Dr. Madlock-Brown.
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@thesicktimes
The Sick Times
3 months
Every dollar donated for the month of March will be matched! Will you help us get to 15k? Donate here โžก๏ธ
@mileswgriffis
Miles W. Griffis
3 months
๐Ÿ“ข Big news! The Silver Giving Foundation is matching every dollar donated to @thesicktimes up to 15k for March! Donate if you're able to, share with five people you know, or repost our donation link on your socials. Let's do this!
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@thesicktimes
The Sick Times
5 months
@zalaly Dr. Walker added that the clinics that received these grants will collect data, aiming to understand best practices for treating Long Covid. Dr. Madlock-Brown also emphasized coordinating across different research areas and working with patients, mentioning @patientled !
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@thesicktimes
The Sick Times
3 months
Re-upping this story from the other week because wtf: Link:
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@thesicktimes
The Sick Times
2 months
We're excited to share our first local news story, a collaboration with @NYAmNews about #LongCovid programs in NYC. "Advocates say that people with Long Covid need more protection from new Covid-19 cases and more services that go beyond healthcare."
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@thesicktimes
The Sick Times
5 months
@zalaly Sen. Hickenlooper (who is now chairing the hearing, as Sen. Sanders had to step out) asked how to better coordinate across the clinics that received HHS/AHRQ funding, other areas of research. Dr. Walker mentioned the clinic leaders are having an initial meeting yesterday/today.
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@thesicktimes
The Sick Times
7 months
Many thanks for supporting our launch ๐Ÿ™ We're humbled by journalist Ed Yong and the National Press Club Journalist Institute for sharing our project in their newsletters. Sign up for our newsletter here โฌ‡๏ธ โžก๏ธ
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@thesicktimes
The Sick Times
10 days
Applications for our part-time positions are now closed! We've been blown away by the interest -- we got more than 200 apps for these two positions. If you applied, please expect to hear from us by early June.
@thesicktimes
The Sick Times
25 days
Thanks to our recent grant, we are now 1) accepting pitches for news stories and essays/commentary pieces with a larger freelance budget, and 2) hiring for two part-time roles. More info:
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@thesicktimes
The Sick Times
7 months
Thank you everyone for all of the enthusiasm and support for @thesicktimes ! We're excited to get to work. If you haven't yet, please help us by filling out our reader survey. We want your help in shaping our coverage!
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@thesicktimes
The Sick Times
5 months
We've received some questions about freelancing for The Sick Times. In response, our About page now includes a section about our bandwidth for commentary and reported articles from outside contributors. Email us with pitches or questions!
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@thesicktimes
The Sick Times
5 months
Unchecked disease spread will only lead to more viral evolution, as millions of people around the world get infected with this variant โ€” and hundreds of thousands likely develop Long Covid as a result. Read the full story here โžก๏ธ
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@thesicktimes
The Sick Times
5 months
The Senate #HELPLongCovid hearing has concluded. Read our full livetweet thread below, and look out for a recap article on our site and in our newsletter in the coming days!
@thesicktimes
The Sick Times
5 months
Good morning! This is @betsyladyzhets , getting started with livetweeting today's hearing at the Senate HELP committee about #LongCovid . Follow along in this thread for updates throughout the event.
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@thesicktimes
The Sick Times
6 months
We're excited to share that this weekend @pozmagazine republished one of our features! A friendly reminder to all editors that we are open source: it's free to republish our articles with credits/links. Please reach out with any questions!
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@thesicktimes
The Sick Times
6 months
NEW: This fall the HHS gave million-dollar grants to nine Long Covid clinics. @betsyladyzhets spoke with seven of the clinics to learn how they plan to use the funding. Read it below โฌ‡๏ธ
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@thesicktimes
The Sick Times
6 months
NEW: According to Neil Shapiro, NIH Budget Director, $200 million has been secured by RECOVER which will be used in a "second round of clinical trials."
@bhanlon15
Billy Hanlon
6 months
Shared from NIH ACD Meeting this morning, courtesy of a LC patient advocate - Neil Shapiro, NIH Budget Director announced that RECOVER has secured an additional $200 million from the pandemic funds [the supplemental appropriations] for a second round of clinical trials. โฌ‡๏ธ
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@thesicktimes
The Sick Times
7 months
What's happening in Long Covid this week? Follow the link below for a free virtual event for The Long Covid Reader book launch, an update on Long Covid Moonshot, new research, and more! โžก๏ธ
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@thesicktimes
The Sick Times
6 months
Thanks for the shoutout @NiemanLab ! "Weโ€™re starting to see flickers of this DIY energy within corners of science media. The Sick Times, a nonprofit newsletter co-founded by Betsy Ladyzhets & Miles Griffis focuses on documenting the crisis of long covid."
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@thesicktimes
The Sick Times
6 months
@luckytran @betsyladyzhets Thanks for sharing this important story ๐Ÿ™
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@thesicktimes
The Sick Times
1 month
@sunsweptforest Thanks for the tag, we'll look into this!
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@thesicktimes
The Sick Times
5 months
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@thesicktimes
The Sick Times
7 months
This advisory committee was one recommendation from the National Research Action Plan on #LongCovid , published in August 2022. Learn more about the advisory committee, including how to apply: More details on this to come in our next newsletter! (2/2)
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@thesicktimes
The Sick Times
5 months
@TheFandelier @zalaly Angela Vazquez was also wearing a mask throughout her remarks and Q&A. Other speakers appear to be wearing masks but pulling them down or taking them off to speak.
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@thesicktimes
The Sick Times
7 months
And if you're able, please help support our reporting by donating or sharing our donation link below. Anything helps!
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@thesicktimes
The Sick Times
2 months
@NYAmNews The story is also available on the @NYAmNews site and in their newspaper today!
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@thesicktimes
The Sick Times
6 months
Join us for our town hall tonight! Register in the link below in our "What's happening this week" post. Linkโžก๏ธ
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@thesicktimes
The Sick Times
6 months
@dsethlewis Thank you so much for your support, Daniel! We hope to receive grant and funding in the future so the burden is not on our readers ๐Ÿ™
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@thesicktimes
The Sick Times
5 months
@matrixmarxist Thanks so much for sharing our story ๐Ÿ™
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@thesicktimes
The Sick Times
10 days
@chiluvs1 We got it! We're fielding a ton of pitches and job apps and have been replying to people slower than we'd like; aiming to catch up in the next few days.
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