Organize for HEAL legislation, ACT NOW, and the 14 Principles đź“•. Take action @LongCovidAP
Washington, DC
Joined July 2023
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LCAP Cure Committee retweeted
Please help support and advance long Covid research and treatments!
A major opportunity to advance Long Covid treatment and research is right in front of us — and the time to act is now.
A new book has been released, presenting a detailed Treatment and Research Agenda for Long Covid — a roadmap to the systemic changes we urgently need. But to create real momentum, we need your help to push it forward. In this thread, LCAP has provided options for action: can you be part of the effort for change and complete one of them?
On May 14, 2025, the Senate HELP (Health, Education, Labor, and Pensions) Committee will hold a critical hearing with HHS Secretary Robert F. Kennedy Jr. on the 2026 Department of Health and Human Services budget. We must act by May 14th to ensure Long Covid is prioritized during this process.
We are asking you to complete at least ONE action this week — bonus if completed by May 14th.
LCAP Cure Committee retweeted
Today I shared the link to the free book pdf with a doctor and forwarded the email to family members and 2 doctors. I talked about the book with my doctor at our appointment.
I'm only getting started! A few tasks every day can make a difference. A ripple can become a big wave!🌊
A major opportunity to advance Long Covid treatment and research is right in front of us — and the time to act is now.
A new book has been released, presenting a detailed Treatment and Research Agenda for Long Covid — a roadmap to the systemic changes we urgently need. But to create real momentum, we need your help to push it forward. In this thread, LCAP has provided options for action: can you be part of the effort for change and complete one of them?
On May 14, 2025, the Senate HELP (Health, Education, Labor, and Pensions) Committee will hold a critical hearing with HHS Secretary Robert F. Kennedy Jr. on the 2026 Department of Health and Human Services budget. We must act by May 14th to ensure Long Covid is prioritized during this process.
We are asking you to complete at least ONE action this week — bonus if completed by May 14th.
LCAP Cure Committee retweeted
Let’s
GET LOUD about our “silent” illness
A major opportunity to advance Long Covid treatment and research is right in front of us — and the time to act is now.
A new book has been released, presenting a detailed Treatment and Research Agenda for Long Covid — a roadmap to the systemic changes we urgently need. But to create real momentum, we need your help to push it forward. In this thread, LCAP has provided options for action: can you be part of the effort for change and complete one of them?
On May 14, 2025, the Senate HELP (Health, Education, Labor, and Pensions) Committee will hold a critical hearing with HHS Secretary Robert F. Kennedy Jr. on the 2026 Department of Health and Human Services budget. We must act by May 14th to ensure Long Covid is prioritized during this process.
We are asking you to complete at least ONE action this week — bonus if completed by May 14th.
LCAP Cure Committee retweeted
3. Call, email, or write letters to Congressional HELP Committee members who are meeting on May 14, 2025 at 1pm ET with testimony from HHS Secretary Robert F. Kennedy Jr. on the 2026 Dept of Health and Human Services Budget. Â
CALL: Phone List for Senators (dial 202-22 and the listed number) senate.gov/general/resources…
EMAIL: HELP Committee Members (Alphabetical): Contact Email List Link
docs.google.com/document/d/e…
LETTERS: [send letters to HELP committee general address w/ “attn:” to the Senator you’d like to address]
HELP Committee Address: Â
Senate Committee on Health, Education, Labor and Pensions
428 Senate Dirksen Office Building,Washington, DC, 20510
LCAP Cure Committee retweeted
2. Send the Long Covid Agenda to Key Policymakers
Email your Senators, Representative, or local health officials asking them to review and act on the Agenda.
[Access the Email Template: Long Covid demands urgent action and a national strategic plan. Please review and act on the Treatment and Research Agenda for Long Covid’s 14 Principles to drive research, treatment, access, and patient-centered care.][add link to PDF copy of the book or share PDF file in the email]
s3.documentcloud.org/documen…
LCAP Cure Committee retweeted
A major opportunity to advance Long Covid treatment and research is right in front of us — and the time to act is now.
A new book has been released, presenting a detailed Treatment and Research Agenda for Long Covid — a roadmap to the systemic changes we urgently need. But to create real momentum, we need your help to push it forward. In this thread, LCAP has provided options for action: can you be part of the effort for change and complete one of them?
On May 14, 2025, the Senate HELP (Health, Education, Labor, and Pensions) Committee will hold a critical hearing with HHS Secretary Robert F. Kennedy Jr. on the 2026 Department of Health and Human Services budget. We must act by May 14th to ensure Long Covid is prioritized during this process.
We are asking you to complete at least ONE action this week — bonus if completed by May 14th.
LCAP Cure Committee retweeted
Through the work of @LCAPCURE committee, we have created a treatment and research guide. Useful for patients, medical practitioners, and researchers.
The book is free to download or available as a physical copy for purchase.
longcovidbook.shop/pdf/
LCAP Cure Committee retweeted
Check out this Long Covid Testing Guide created by @LongCovidAP with contributions by @LCAPCURE committee.
Includes everything from spike protein to autoantibodies to immune function. It's a work in progress, with more being added as research progresses.
docs.google.com/document/d/1…
LCAP Cure Committee retweeted
Which is why there's nothing more important now in long COVID research than detecting SARS-COV2 viral load in patients: We won't be helped until we have proof.
Read & Share: A NATIONAL TREATMENT AND RESEARCH AGENDA FOR LONG COVID
longcovidactionproject.com/
“The truth is we never really helped HIV until we discovered the HIV virus. That was important and that we found very quickly, and from 1984 to 1993 I was in science—seven years to go from a bug no one even knew before to a bug that had 12–13 different antivirals. And then we found out what combinations worked, and by 1994, if you had HIV, you were not likely to die from this anymore.”
—Nancy Klimas, Director of the Institute for Neuro-Immune Medicine @NSU_INIM
LCAP Cure Committee retweeted
That’s why we need treatments for SARS-CoV-2 & Long COVID now!
actionnetwork.org/letters/ur…
LCAP Cure Committee retweeted
🚨 Long Covid = “Airborne AIDS”? Watch This & Wake Up 🚨
📺 Watch now: youtu.be/O5vJxQY83QE?si=QISU…
🦠Like HIV, Long Covid is damaging immune systems.
🦠Like HIV, SARS-CoV-2 is being covered up by those in power.
🦠Like HIV, it demands urgent biomedical action—but we’re being ignored.
Millions are being disabled by Long Covid, yet governments & health agencies are not telling the stories of kids & adults to warn the public about this disease. In this powerful presentation, LCAP activist @AdamVanBavel breaks down why @NIH agrees w/ “Long Covid AIDS” — and why the parallels to the early AIDS crisis are terrifying.
So ask yourself: Why are they letting this happen? Who benefits from keeping us sick?
Take action & read/share the book📕 “A National Treatment & Research Agenda for Long Covid” listed as a #1 resource in Adam’s video: longcovidbook.shop
#LongCovid #AirborneAIDS #LongCovidAIDS #BiomedicalResearch #LongCovidAwarenessMonth
ALT LCAP direct action held before the NIH conference on Long Covid in 2024. photograph: Steven Rubin
ALT Adam Van Bavel, a long COVID patient activist, discusses his experiences with long COVID and the impact long COVID has on society, including chronic illness, and weakening our country's workforce. He presents a number of informative videos and reviews the literature regarding prognosis and the paucity of available treatments. Prevention is key, if you do not get COVID you will not get long COVID. Clean air is one of the keys to prevent spread and focusing on children and schools are of utmost importance since it has been observed that 70% of community spread starts in schools.
LCAP Cure Committee retweeted
A strong positive for #LongCovidAwarenessDay.
I've been testing positive since March 12, 2024. A whole year of pink lines and 5 years of #LongCovid.
People with Long COVID have been without treatment for too long.
Whether 1 year or 5 years, it's been long enough. Treat Long COVID now.
#LongCovidAwareness
#LongCovidAwarenessDay2025
March is my COVID anniversary month.
I've had long COVID since March 2020. 5 years is too long.
There are no biomarker tests or treatments for Long COVID.
Since March 2024, over a year, I've tested positive for #COVID. 1 year is too long.
There are no antivirals or monoclonal antibodies for chronic COVID. Paxlovid and a few other treatments have temporarily caused negative test results. But my insurance won't cover an extended course of Paxlovid, leaving me without treatment.
#LongCOVID is chronic COVID.
We need tests, treatments, and #AntiviralsNow.
We have waited long enough.
#LongCovidAwareness
#LongCovidAwarenessDay2025
Image is a year of used COVID tests, dated on the back. From March 2024 to March 2025. Positive red lines are still visible on upright tests.
LCAP Cure Committee retweeted
I don't want to be neglected and sick for another 5 years. Chronic infections should be treated.
It's Time to Change The Agenda: A National Treatment & Research Agenda for Long Covid 📕⏱️
New book by @LongCovidAP @LCAPCURE
Free to download or available to purchase for small donation.
longcovidbook.shop/
LCAP Cure Committee retweeted
Time to Change The Agenda: A National Treatment & Research Agenda for Long Covid 📕⏱️
New book by @LongCovidAP @LCAPCURE
Free to download or available to purchase for small donation.
xitter.cf/joshuapribanic/status/…
LCAP Cure Committee retweeted
Urgent Action Needed: Introducing LCAP’s Groundbreaking Book on Long Covid for #LongCovidAwarenessDay2025 @NIH
"This book is more than a call to action — it’s a blueprint for change" ✅ open.substack.com/pub/natocr…
#LongCovidAwarenessMonth
#LongCOVIDAwarenessWeek
#CureLongCovidNow
LCAP Cure Committee retweeted
A picture worth a thousand words 🤯
This image shows Long Covid is SARS-CoV-2 viral persistence — a shocking visual that all Long Covid researchers & healthcare providers need to see.
We need to change the agenda! Read the 14 đź“• longcovidbook.shop
#LongCovidAwarenessDay
March is my COVID anniversary month.
I've had long COVID since March 2020. 5 years is too long.
There are no biomarker tests or treatments for Long COVID.
Since March 2024, over a year, I've tested positive for #COVID. 1 year is too long.
There are no antivirals or monoclonal antibodies for chronic COVID. Paxlovid and a few other treatments have temporarily caused negative test results. But my insurance won't cover an extended course of Paxlovid, leaving me without treatment.
#LongCOVID is chronic COVID.
We need tests, treatments, and #AntiviralsNow.
We have waited long enough.
#LongCovidAwareness
#LongCovidAwarenessDay2025
Image is a year of used COVID tests, dated on the back. From March 2024 to March 2025. Positive red lines are still visible on upright tests.
LCAP Cure Committee retweeted
Time to Change The Agenda for Long Covid ⚠️⏱️💥
Read the 14! đź“•
For Long Covid Awareness Month, LCAP has published the new book “A National Research and Treatment Agenda for Long Covid,” available here: ✅ LongCovidBook.shop
You can also download a copy for free.
This was a huge effort by Long Covid patients who pulled off a miracle in completing this.
LCAP wants to acknowledge and thank everyone who helped including:
LCAP CURE Committee for hours and hours of research and writing
Public Herald Studios for printing and distribution of book and merch
Copy Editor Mitch Raney
The 1989 Treatment Action Group (TAG) and ACT-UP for AIDS for the inspiration.
#LongCovidAgenda #LCAgenda #LongCovidAwareness #LongCovidKids #CureLongCovid
ALT Book: đź“• A National Treatment and Research Agenda for Long Covid
LCAP Cure Committee retweeted
A Long Covid treatment and research agenda written by people with Long Covid! Essential reading
Time to Change The Agenda for Long Covid ⚠️⏱️💥
Read the 14! đź“•
For Long Covid Awareness Month, LCAP has published the new book “A National Research and Treatment Agenda for Long Covid,” available here: ✅ LongCovidBook.shop
You can also download a copy for free.
This was a huge effort by Long Covid patients who pulled off a miracle in completing this.
LCAP wants to acknowledge and thank everyone who helped including:
LCAP CURE Committee for hours and hours of research and writing
Public Herald Studios for printing and distribution of book and merch
Copy Editor Mitch Raney
The 1989 Treatment Action Group (TAG) and ACT-UP for AIDS for the inspiration.
#LongCovidAgenda #LCAgenda #LongCovidAwareness #LongCovidKids #CureLongCovid
ALT Book: đź“• A National Treatment and Research Agenda for Long Covid
LCAP Cure Committee retweeted
March is #LongCovidAwarenessMonth đź“Ł signaling a time to act! LCAP joins with all victims of this dreadful disease to commemorate yet another year of no approved diagnostics or treatments.
This story needs action if we’re going to find a better ending. xitter.cf/LongCovidAP/status/176…
LCAP hopes you will join us this month as we start a new chapter to empower people with Long Covid.
Patients must lead the way to #CureLongCovid.