Gina Assaf 🍉

in the gop tax plan, the top 0.1% gets more than all the households in the bottom half of america combined

“Long COVID Mode”: Seeing the crisis through games - The Sick Times Games uniquely incorporate emotional and social factors that influence how we take in information — making them surprisingly useful communication tools in a world in denial about the ongoing threats o...

delved into the world of games and Long COVID for one of my favorite pieces i've gotten to report!

for @thesicktimes.bsky.social: some truly thoughtful perspectives and very cool games from @stevewilcox.bsky.social, @zoyander.cc, and @chantalbritt.bsky.social.

thesicktimes.org/2025/05/06/l...

At #nationalhealthcouncil 2025 science of patient engagement symposium on elevating innovation. Looking forward to speaking tomorrow on the panel on Data at the speed of care: Engineering universal access, patient driven data to inform AI and ML tools. #spes2025

The text in the post

Photos of food supplies being offered for barter: a pint or two of oil, canned items, small bags of pasta

Meanwhile, Palestinians in Gaza are down to the final rations of supplies, and offering barters since food aid ran out - I have sugar if anyone can trade for fuel. Seeking a container of instant coffee. I need salt, will buy or trade.

ATTN: people with #MECFS, people with #LongCovid, & disability allies, please show up on May 12th (in DC & from home!)

#DisabilitySOS
#MillionsMissing

Without ongoing funding, PLRC will have to scale back our work after August.

Please consider donating if you're able, or send to folks who would like to support us.

We feel indebted to our community and are grateful to you all! 💓

bit.ly/plrc-donate 9/

"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards.” – Dr. Kelly O’Brien, Professor in the Department of Physical Therapy, at the University of Toronto, Applying Dynamic Disability.

Dr. Kelly O'Brien:

"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards." 8/

PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs. Collaborating with PLRC and a diverse scientific team on a project on Long Covid in Brazil has taught me what a disability-justice-informed research project can be, and how to centre patients’ experience and needs to produce really grounded recommendations.” – Dr. Flora Cornish, Professor in Research Methodology at the London School of Economics and Political Science.

Dr. Flora Cornish:

"PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs." 7/

Over the past five years, PLRC has sounded the Clarion call for truth about the disease state of Long COVID. Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID. In designing our NIH-funded clinical trial of immunomodulation for Long COVID, we were greatly edified by leaders of PLRC, who helped us hone our research design…PLRC, to you I raise a toast and wish you a happy fifth birthday." – Dr. E. Wesley Ely, MD, Professor of Medicine & Critical Care at Vanderbilt University Medical Center.

Dr. Wes Ely:

"Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID." 6/

Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research. The deep alliance between clinician-researchers and patient-researchers from the earliest days of the pandemic has been one of the most important drivers of progress in this field, and is a major motivator for me personally to focus on studying diseases like Long COVID.” – Dr. Michael Peluso, Assistant Professor of Medicine at the University of California, San Francisco

Dr. Michael Peluso:

"Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research." 5/

PLRC has been a transformational force in Long Covid. These people are my heroes and I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the original PLRC survey and stories from PLRC members made us pursue Long Covid research and advocacy. The work done by PLRC galvanised a lot of progress over the past 5 years–progress on every front from increasing awareness and understanding of Long Covid, to research, improved clinical care, and advocacy. I have huge admiration for each and every one of them and am eternally grateful for what they have done.” – Dr. Ziyad Al-Aly, Chief of Research and Development Service, VA St. Louis Health Care System

Dr. Ziyad Al-Aly:

"PLRC has been a transformational force in Long Covid. These people are my heroes & I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the PLRC survey...made us pursue Long Covid research and advocacy." 4/

We've since published 40 papers (including patient-prioritized topics and multiple top-cited works in the field), funded $5 million in external research, advanced some of the most meaningful advocacy milestones, and more.

Some quotes from our research allies:
3/

5 years ago today, PLRC launched our first survey to get answers for the thousands of patients who didn't recover after COVID.

This led to our May 2020 report (patientresearchcovid19.com/research/rep...) and Dec 2020 paper (medrxiv.org/content/10.1...), which remains top-cited in the field. 2/

banner with pastel colors that says "Patient-Led Research Collaborative 5th anniversary - you can sustain long covid patient-led work when it's needed most!" with a link to bit.ly/plrc-donate

PLRC is 5 years old today!!!!

If you are able, please consider donating to help sustain #LongCOVID research when it’s needed most.

bit.ly/plrc-donate 1/

The State of Long COVID Join r searchers, disability advocates, and students for a panel discussion on the crisis affecting 400+ million people. April 10 5-6:30 pm Winslow Auditorium To-go boxes of food and masks provided; masks required. Sponsored by the Yale Graduate and Professional Student Senate for National Public Health Week

A panel discussion about Long COVID will be hosted on Thurs 4/10 by the Yale Graduate & Professional Student Senate. Panelists will include Dr. Akiko Iwasaki (@virusesimmunity.bsky.social), Dr. David Putrino, disability advocates, and students. Register at: ysph.yale.edu/event/long-c...

#LongCOVID

Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC - 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 edit...

Today @thesicktimes.bsky.social: I did an exit interview with @lisamccorkell.bsky.social, reflecting on her five years at the Patient-Led Research Collaborative.

You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...

Support David Esteban's study on Microbial Metabolites in Long COVID * Heads up: Zeffy has a default "tip" of 17% that goes to them, but it's not required. When you go to donate, you can select the dropdown under "Help keep Zeffy free for Renegade Research" and put in ...

Hey y’all—David Esteban’s @patientled.bsky.social funded Long Covid study has hit a snag just before the finish line—the cost to process samples went up. They’ve collected 43 but now can only run 20. $7000 would cover the rest!

Thanks so much for giving or boosting!

The elimination of: grants to study #LongCovid, the Office of LC, & Advisory Committee on LC — have sent a chilling signal. We encourage folks to take the following action led by our partners:

1. Call your reps: win.newmode.net/longcovidcam...

2. Email your reps: actionnetwork.org/letters/long...

UPDATE: RECOVER Long COVID pathobiology grants restored - The Sick Times Long COVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, accord...

🚨 BREAKING: Long COVID research grants rescinded earlier this week have been restored, according to researchers & patient reps. Advocates organized quickly yesterday in response to the news, helping reverse the decision.

Exclusive in @thesicktimes.bsky.social

thesicktimes.org/2025/03/28/u...

Gazans’ mental state at breaking point after ceasefire violation Gaza is once again gripped by violence, pushing its people into deeper psychological distress, with many now witnessing hallucinations, depression, and anxiety

Gaza is once again gripped by violence, pushing its people into deeper psychological distress, with many now witnessing hallucinations, depression, and anxiety 👇

Science has learned that grant termination letters went out last night to principal investigators of 29 awards made by the National Institute of Allergy and Infectious Diseases (NIAID), including nine grants that were part of a program hoping to deliver antiviral drugs to prevent future pandemics.

Other terminated grants involved research to develop improved COVID-19 vaccines and to address Long Covid, the mysterious lingering aftermath of some SARS-CoV-2 infections. “The research is being treated like we already have all the answers we will need in the future and that the current vaccines work well enough and don’t need improvement, which we know is not true,” says an investigator involved with one of the NIAID grants who asked not to be named for fear of retribution. “Some of the studies being canceled were attempting to make a pancoronavirus vaccine, which would hopefully be available the next time a novel coronavirus jumps species into humans.”

Folks, very bad news for #LongCOVID. Deep breath.

29 awarded grants to do with COVID and Long COVID have been rescinded by NIH. 🧪

www.science.org/content/arti...

Long Covid office latest casualty in HHS shake-up The Trump administration is closing HHS' long Covid office, according to an internal email seen by POLITICO.

Politico: 'Long Covid office latest casualty in HHS shake-up'

'Advocates for patients with long Covid are outraged at the administration’s decision, saying it appears to contradict promises that HHS Secretary Robert F. Kennedy Jr. made...'

www.politico.com/newsletters/...

HHS's Office of Long COVID Research and Practice has been DOGEd. Closing this week.

The Trump Administration Accidentally Texted Me Its War Plans U.S. national-security leaders included me in a group chat about upcoming military strikes in Yemen. I didn’t think it could be real. Then the bombs started falling.

Sheesh

Long COVID could be causing huge economic burden annually Behind the healthcare burden from long COVID, a study has also uncovered the economic burden of those who are more likely to suffer from long COVID through a computer simulation model of long COVID pr...

"Long COVID could be causing huge economic burden annually"

"The current number of long COVID-19 cases may already be costing the U.S. $2.01-6.56 billion dollars per year, according to a study recently published in the Journal of Infectious Diseases"

www.the-microbiologist.com/news/long-co...

Beyond long COVID — how reinfections could be causing silent long-term organ damage | CBC Radio Scientific evidence is painting an unsettling picture: COVID infections, even if mild or asymptomatic, may be causing long-term cellular and organ damage, as well as increasing your risk of developing...

CBC: 'Beyond long COVID — how reinfections could be causing silent long-term organ damage'

'Even if you think you're done with COVID, COVID might not be done with you'

'..we saw immune dysregulation, we saw hormonal dysregulation...'

www.cbc.ca/radio/quirks...

El Cajon nurse can’t shake COVID-19’s unrelenting grip: ‘I have lost relationships’ New cases of the debilitating syndrome known as long COVID are still being diagnosed daily

San Diego Union-Tribune: 'El Cajon nurse can’t shake COVID-19’s unrelenting grip: ‘I have lost relationships’'

'New cases of the debilitating syndrome known as long COVID are still being diagnosed daily'

www.sandiegouniontribune.com/2025/03/16/e...

Five years later: What we learned from COVID-19 In 2020, Graham McKeen was Indiana University’s assistant director of public and environmental health. He spoke with WFIU/WTIU News to reflect on what he learned, and what pieces researchers are still...

Indiana Public Media: 'Five years later: What we learned from COVID-19'

'Long COVID currently has no test and no cure'

“It just killed my brain,” McKeen said. “Like, I couldn't think. I couldn't speak correctly. I wasn't thinking coherently for 10 months.."

indianapublicmedia.org/news/five-ye...

It's Long Covid Awareness Day. I know ~10 people (still) suffering from life-altering Long Covid. The only 'special' thing about me? I've been public about my own illness, so I hear stories others don't. Long Covid is widespread, devastating, and deserves everyone's attention