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People with #LongCOVID deserve equal access to prescriptions that could lessen their symptom burden & information about potential risks. More about how & why in this op-ed by charlos and me, which was sparked by a discussion the Patient-Led Research Collaborative team: statnews.com/2024/10/24/lon… 1/2

As many of you are waking up to some devastating news, please know that you’re not alone in feeling the weight of this moment. Many of us are grieving this outcome, especially those in the #LongCOVID, #IACC, and #disability communities, who will bear a profound impact. The work

I know today is a frightening day for many with #LongCOVID, #MECFS, chronic #lyme and other infection-associated chronic conditions. Today, all I can offer is a small piece of advice and a small piece of reassurance. Advice: please take care of yourselves and practice some 1/

Good morning! The PolyBio 2024 Fall Symposium is kicking off shortly, and we will be live tweeting the entire event! Follow along on this 🧵 1/

Thank you Lisa McCorkell and Patient-Led Research Collaborative for speaking to STAT to keep Long Covid and patients with infection associated chronic conditions at the front of the science and medicine conversation statnews.com/2024/11/08/tru…

Excited to share this Science Translational Medicine viewpoint with Maureen Hanson on why #LongCOVID #MECFS and other infection-associated chronic conditions should be studied together as part of a coordinated research agenda. science.org/doi/10.1126/sc…

New York Times: 'A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves' 'For people with debilitating long Covid, the new year heralds a cruel anniversary: Some are experiencing their fifth year with the agonizing illness...' nytimes.com/2024/11/26/opi…

Some of the most promising research on debilitating Long Covid was funded by a small patient group using the $5 million they got from vitalik.eth — in cryptocurrency! That's why picked Patient-Led Research Collaborative as my choice for this year's donation guide. Great way to make a difference.

NIH Town Hall on Strategic Plan for Disability Research Tuesday, 12/3, 2024 | 2:30-3:30 p.m. ET NIH is in the initial stage of developing an agency-wide NIH Strategic Plan for Disability Research. #MECFS #LONGCOVID Register: scgcorp.zoom.us/webinar/regist…

Urge President Donald J. Trump to take executive action on #LongCOVID before leaving office! Learn more & send a letter ⬇️ actionnetwork.org/letters/demand…

New modeling study finds that if everyone in the United Kingdom had worn N95 or FFP2 masks from the start of the pandemic, the rate of COVID-19 transmission would have been 9 times lower.

We're hiring 2 new roles! These are 6-month contracts with possible extension, and can be between 25-40 hrs/week. Deadline Dec 31! 1) Partnerships & Advocacy Coordinator 2) Fundraising & Operations Manager Please share widely! patientresearchcovid19.com/job-opportunit… #LongCovid #neisvoid #pwme

Have you checked out COVID-19 Longhauler Advocacy Project's fantastic Comprehensive Guide to #LongCovid yet? It covers a wide range of topics from what is Long COVID to how to apply for support services to how to contact Congress. A great resource to utilize and share! longhauler-advocacy.org/2024cglc

Did your existing health issues get worse after a #COVID infection, or did you develop new onset #LongCOVID? Tune in to our free webinar on January 23rd to learn how you can get involved in a study we're working on with the FDA and other patient orgs. 1/10

“The impact of the collective executive orders and directives appears devastating.” scim.ag/4h5ngYC

The Federal Advisory Committee on Long COVID has been ordered terminated on 2/19/25 within 14 days. “the Secretary of Health and Human Services shall terminate the Secretary’s Advisory Committee on Long COVID.” whitehouse.gov/presidential-a… #LongCOVID