LCAP is a united, diverse force of non-partisan individuals taking action to end the Long Covid crisis through awareness & government accountability.

Washington, D.C.
Joined January 2023
"ANTIVIRALS NOW" a new short film directed by @JoshuaPribanic on SARS2 viral persistence reveals the destabilizing truth about Long Covid. Scientists, #pwLC & activists illustrate how society is threatened by COVID persistence. Take action 🧵 #LongCovidAwarenessDay
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LCAP (Long Covid Action Project) retweeted
Replying to @NeurologistMom
Cefuroxime, a cephalosporin antibiotic similar to cefixime, has antiviral effects on SARS-COV2. The mechanisms of action are likely comparable. longcovidactionproject.com/a…
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The trial includes biomarkers, which are not elaborated upon in the press release or trial summary. These biomarker results need to be made public for phase 2 and 3 results. Biovie needs to provide assurance that it has corrected the trial site data corruption that allegedly occurred for a phase 3 trial of bezisterim for Alzheimer’s. We support the measurement of biomarkers in Long Covid trials. However, transparency is imperative for trial results to be trustworthy.
Bezisterim showed positive results in a Long COVID trial. For LC patients who have neuroinflammation resulting in fatigue, cognitive impairment, and possibly Parkinsons/Alzheimers-like symptoms, this could help. It does not treat the infection directly or suppress the immune system. Functional improvement would be welcomed by many people with LC. Hopefully phase 3 will give us a better idea of who would respond and how, and how much improvement would be expected.
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Past trials using antiviral ritonavir as placebo against Paxlovid/nirmaltrelvir-ritonavir for 15 days have also failed. We clearly state how to improve trial design to avoid repeating these mistakes and wasting resources. Measure viral load, not just symptoms. Use true placebo, not a pharmaceutical, as a control group. Bad science is "doing the same thing over and over and expecting different results." Excerpts from "Past Disasters" chapter of our book, A National Treatment and Research Agenda for Long Covid.
'RECOVER-VITAL clinical trial finds no benefit of extended duration of PAXLOVID for Long COVID' 'The study recruited 959 adult patients who had Long COVID from 69 sites across the United States and collected data between July 2023 and early 2025' recovercovid.org/news/recove…
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To download our book A National Treatment and Research Agenda for Long Covid: Longcovidbook.shop
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LCAP (Long Covid Action Project) retweeted
Flawed trial designs lead to trial failures. NIH RECOVER used ritonavir (an antiviral shown to have an effect on SARS-COV2) as a placebo compared to nirmatrelvir+ritonavir. They also only measured specific symptom categories, so if different improvements occurred, they were not measured. Viral load or other markers of viral persistence were not measured. It's possible that with different parameters and a true non-drug placebo this trial could have been a success. It's also possible that Paxlovid could work better in an antiviral combination therapy. In HIV, it takes about 3 months for antivirals to have significant effect, and in FIP (feline coronavirus) about 80-90 days. Other viruses require similar long term treatment durations, meaning a 25 day course is too short by comparison. The only positive result of this doomed from the start trial was monitoring tolerance of Paxlovid for courses up to 25 days. It was well tolerated by participants. I've done up to 30 days of Paxlovid myself, so I'm glad to see a study demonstrate safety in a large cohort.
'RECOVER-VITAL clinical trial finds no benefit of extended duration of PAXLOVID for Long COVID' 'The study recruited 959 adult patients who had Long COVID from 69 sites across the United States and collected data between July 2023 and early 2025' recovercovid.org/news/recove…
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LCAP (Long Covid Action Project) retweeted
The opportunity for patients and advocacy groups to submit abstracts for the @ISLCPAIS was not well advertised. I submitted an abstract as soon as I learned of the option by reading a random X reply comment. I was told I was too late for a link or file to be shared. @LongCovidAP's book can be downloaded at longcovidbook.shop I want all the conference attendees to read this. #islcpais Also $150 is too expensive for VOD for patients. We should get access at something like the recap price. Many of us have had extreme hardship and out of pocket medical expenses since 2020. ISLC, if you want patients to participate, you need to engage in clear outreach communication. I understand that you have deadlines, but I am on this app every day and didn't see anything about patient research abstracts until this week.
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LCAP (Long Covid Action Project) retweeted
Just some HIV history … I asked: “Did they know HIV persists right away?” “No, they absolutely did not. When HIV was discovered in the 1980s, scientists originally believed it was a standard acute infection that simply took years to slowly destroy the immune system. The "Dormant" Illusion: For over a decade, scientists thought that after the initial flu-like illness, the virus went into a "clinically latent" phase where it lay completely dormant and didn't replicate much. The Paradigm Shift (1993): It took roughly 10 years and the invention of much more sensitive testing (Quantitative PCR) for researchers to realize they were wrong. In 1993, landmark studies proved that HIV never actually stops replicating.” They’ve know SARS-CoV-2 persists in people a shorter amount of time then it took them to figure it out that HIV persisted in people and we have much less progress than those with HIV despite the sheer numbers of sick with #LongCOVID and technological advancement. The more you know 🌈.
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"Avoiding active ingredients as 'placebos' unless trial is intended to compare potential treatments." -excerpt from A National Treatment and Research Agenda for Long Covid by LCAP IV saline would be considered an active ingredient for any patient suffering from hypovolemia, POTS, or dehydration. It should not be used as a placebo in Long Covid trials, unless the objective is to compare the outcomes of the 2 treatments.
Them: Did you know that people in #longCOVID trials have extremely high placebo rates? Really makes you think…. Me: Oh yeah? What placebo did they use? Them: Nothing crazy, just IV saline Me: 😐😠😡🤬 I wish people understood pathophysiology.
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Ma'am this is a Long Covid org.🍔🍟 We are not affiliated with any ME/CFS campaigns and rebuke chronic illness conflation, whether that's IACC, ME/CFS, or other conditions.
Replying to @Aguirre1Gustavo
💯 🚫 Sequelae 🚫 PASC 🚫 PAIS 🚫 IACC 🚫 “post” ✅ Long Covid ✅ SARS-CoV-2 viral persistence ✅ Chronic
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*This is a subtweet to address a rumor started on this site. We're not affiliated with any other orgs representing other conditions. Our focus is on Long Covid. We recognize that many people with LC also have ME/CFS, with onset before or after COVID.
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To the manufacturer of Xocova @ShionogiUS : Many people with Long Covid and immune compromised conditions have sensitivity to wheat and corn, which you have used to create ensitrelvir tablets. To expand your market and increase product safety, remove these ingredients from the medication. Mannitol can be derived from hypoallergenic sources.
Warning to those with celiac, gluten intolerance, or wheat allergy! Xocova/ensitrelvir the new PEP antiviral for COVID contains wheat. I was concerned when I saw mannitol listed as the first ingredient. I sourced info directly from the manufacturers site. @ShionogiUS please consider reformulating Xovova so that it is safe for those with sensitivities to wheat, gluten, and corn to take. Many of the immune compromised patients who would be at risk for COVID cannot tolerate gluten. Mannitol can be derived from other sources. Please make changes to your inactive ingredients!
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LCAP (Long Covid Action Project) retweeted
This is why we never should have used monotherapy for SARS-COV2. Like HIV, the virus can quickly develop resistance against protease inhibitors. Multiple antivirals with different functions, similar to HIV ART, would be wiser. Protease inhibitors could be effective in combination. That is, if the virus isn't already resistant.
A new study found overlapping resistance patterns across Paxlovid-like SARS-CoV-2 antivirals. This matters for future Long COVID viral-persistence trials, where resistance could block clearance, similar to why HIV treatment uses combinations. Let's break it down.
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This is the way "Right to Try" medical access laws should be:
1/ Long COVID patients often hit a wall: no approved cures, limited options, and symptoms that can worsen over time. But one state is rewriting the rules on experimental access. Montana’s expanded “Right to Try” laws could open new doors for chronic conditions like Long COVID. Here’s what that actually means. 🧵
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LCAP (Long Covid Action Project) retweeted
My FDA drug repurposing comment submission, which included LCAP's book as an attachment and research citation source: I am writing to advocate for the research and repurposing of antivirals for the treatment of lymphocytopenia due to COVID and Long Covid. Antivirals could possibly benefit other conditions and symptoms from chronic COVID infection/Long Covid, but they have measurably improved my lymphocytes subsets which were deficient after COVID infection starting in 2020. Monoclonal antibodies Evusheld and Pemgarda, plus subcutaneous immuneglobulin infusions, have also improved my immune health and LC symptoms. The antivirals that have helped me are maraviroc 300mg twice daily, Truvada TDF form 1 tablet once daily, Stribild 1 tablet once daily, Paxlovid (as directed but for longer courses such as 20-30 days), and also Tollovid supplement 3 capsules 4 times a day. My attached chart shows my lymphocyte subsets from 2018 prior to COVID to present day. The deficiency began after my infection in 2020 and has resolved with my current combination of Stribild, maraviroc, Pemgarda, Tollovid, and Gammagard immuneglobulin. I take Truvada instead of Stribild during acute COVID infections and take Paxlovid for extended courses. Also attached is LCAP's book A National Treatment and Research Agenda for Long Covid. There are research references cited in the book demonstrating the potential efficacy of the drugs and antibodies I've mentioned here. My doctors believe I have chronic viral reservoirs of SARS-COV2, particularly in my bone marrow due to B cell suppression, that are treated by these antivirals. Long Covid has been neglected by research, dismissed as a fatigue syndrome goven palliative care, but with my case study I believe I demonstrate the potential for lymphocytes subsets as a biomarker and antivirals plus antibodies as long-term therapeutic treatment. Like HIV, we need sensitivity panels and viral detection/load tests, but I believe I have demonstrated an alternative that can be implemented now. Please also consider the other medications and research protocols for LC described in the book. I was an author on this LCAP committee. I took our research one step further with medical oversight and trialed the drugs myself. I believe there are many others out there like myself who would benefit from repurposed HIV antiviral therapy. Thank you for your consideration. I am available for further discussion. See attached file(s): LCAP's book in pdf file format and my lymphocytes subsets/treatment response graph
📢 Final deadline for FDA public comment on drug repurposing 11:59pm EST Monday July 13th 🚨
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📢 Final deadline for FDA public comment on drug repurposing 11:59pm EST Monday July 13th 🚨
URGENT ACTION!!! 🚨 DEADLINE June 11th: FDA is requesting public comments regarding repurposed drug research. Long Covid is desperately in need of research like this. LCAP wrote A National Treatment and Research Agenda for Long Covid to advocate for developing and repurposing drugs for LC. You can personalize your comment, but we give permission to use our book as the attachment. You can download our book for free as a pdf and attach it to your submission. Many antivirals and immune modulating drugs are listed with citations. We originally submitted these to NIH RECOVER, but FDA is a different department, giving access and priority to drugs for trials. They need to hear from the LC community! This may be our only chance during this administration. Links to FDA comment site and LCAP's book in next post...
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LCAP (Long Covid Action Project) retweeted
Reminder: Deadline to Submit Comments to the FDA on Repurposed Medications is coming up on Monday, July 13! 💊💊💊 In case you missed it (or need the reminder!): In May, the @US_FDA put out a call for public comment on repurposed medications, specifically for rare and poorly understood diseases. Essentially, they're interested in learning about drugs that already exist and have approval for certain conditions can be used to help patients with other diagnoses. FDA has requested input on specific treatment ideas, as well as ideas for study to design and how to best evaluate the potential of these drugs. Long COVID Labs, along with many other LC advocates, has submitted a comment urging the FDA to focus on our disease. Since our team is primarily focused on SARS-CoV-2 persistence as the root cause of Long COVID, we submitted a comment urging the FDA to study how existing medications such as monoclonal antibodies and antivirals can be used to treat this disease. 1/
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LCAP (Long Covid Action Project) retweeted
🆕 🚨REMINDER: Comments on Repurposed Meds due MONDAY July 13 🔺Comment here: regulations.gov/docket/FDA-2… All welcome INFO⬇️ #MedEd @TheWHN @we_are_ssd @AnciraBecky @jlerollblues @MichaelCWilder @dbdugger @michael_hoerger @keetmuise @KrutikaKuppalli @MatthewHalma @Neuroscope_mp
Reminder: Deadline to Submit Comments to the FDA on Repurposed Medications is coming up on Monday, July 13! 💊💊💊 In case you missed it (or need the reminder!): In May, the @US_FDA put out a call for public comment on repurposed medications, specifically for rare and poorly understood diseases. Essentially, they're interested in learning about drugs that already exist and have approval for certain conditions can be used to help patients with other diagnoses. FDA has requested input on specific treatment ideas, as well as ideas for study to design and how to best evaluate the potential of these drugs. Long COVID Labs, along with many other LC advocates, has submitted a comment urging the FDA to focus on our disease. Since our team is primarily focused on SARS-CoV-2 persistence as the root cause of Long COVID, we submitted a comment urging the FDA to study how existing medications such as monoclonal antibodies and antivirals can be used to treat this disease. 1/
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This decision sends us in the totally wrong direction! 🛑 COVID and Long Covid need to be declared a national emergency, and the FDA EUA authorization process needs to be used to make new treatments available and grant access to off-label medications. The 12 month grace period is too short to allow current EUA medications to be fully approved. Patients will lose access to these drugs and biologics. There are now no other monoclonal antibodies for COVID besides Pemgarda. This HHS order will repeat the mistake made in January 2023 with Evusheld: there were no mAbs available again until March 2024 after FDA revoked its EUA authorization. Immune compromised patients will die as a result of this decision. Emergency authorization of Pemgarda must remain in place until a replacement is available!
📢PSA: HHS has officially ended all COVID-19 emergency use authorization declarations. They’re giving a 12-month “advance notice” / grace period to manufactures of drugs or biological products, and a 6-month period to manufacturers of medical devices, to shift to full approval/clearance. As far as I can tell, this impacts: Monoclonal antibodies: • Pemgarda (pemivibart), Invivyd • GOHIBIC (vilobelimab), InflaRx Antivirals: • Lageviro (molnupiravir), Merck • Paxlovid (nirmatrelvir) (for adolescent population, ages 12 to 18), Pfizer Miscellaneous: • Kineret (anakinra), an interleukin-1 blocker, Sobi • Olumiant (baricitinib), a JAK inhibitor, Eli Lilly Diagnostics: • Metrix NAAT tests, Aptitude Medical Systems • A bunch of rapid test brands, but none of the “main” or more popular ones In regard to Metrix tests, Aptitude has already shared that they’re in correspondence with FDA on clearance, and are permitted to continue sale while under review. HHS press release: hhs.gov/press-room/hhs-ends-… Link to the FDA’s EUA page: fda.gov/drugs/emergency-prep…
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LCAP (Long Covid Action Project) retweeted
This is incredibly bad. There may not be a Pemgarda replacement available by the time the 12 month "grace period" is up. That means there won't be any mAbs for COVID. This removes treatments from use for no scientific reason at all: this is political, pretending COVID is over. Molnupiravir isn't a drug I typically endorse, but it was needed for those who couldn't tolerate protease inhibitors like Paxlovid. It was also being used off-label for cats with FIP. Many RAT tests will vanish from the market. If you have a favorite, check its approval status and stock up. I'm not sure whether SARS-COV2 PCR and antibody lab tests will be impacted.
📢PSA: HHS has officially ended all COVID-19 emergency use authorization declarations. They’re giving a 12-month “advance notice” / grace period to manufactures of drugs or biological products, and a 6-month period to manufacturers of medical devices, to shift to full approval/clearance. As far as I can tell, this impacts: Monoclonal antibodies: • Pemgarda (pemivibart), Invivyd • GOHIBIC (vilobelimab), InflaRx Antivirals: • Lageviro (molnupiravir), Merck • Paxlovid (nirmatrelvir) (for adolescent population, ages 12 to 18), Pfizer Miscellaneous: • Kineret (anakinra), an interleukin-1 blocker, Sobi • Olumiant (baricitinib), a JAK inhibitor, Eli Lilly Diagnostics: • Metrix NAAT tests, Aptitude Medical Systems • A bunch of rapid test brands, but none of the “main” or more popular ones In regard to Metrix tests, Aptitude has already shared that they’re in correspondence with FDA on clearance, and are permitted to continue sale while under review. HHS press release: hhs.gov/press-room/hhs-ends-… Link to the FDA’s EUA page: fda.gov/drugs/emergency-prep…
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LCAP's action ACT NOW in January 2025 submitted most of these pharmaceuticals as proposed therapeutics for trials to NIH RECOVER. In March 2025, we compiled these recommendations into A National Treatment and Research Agenda for Long Covid book. Only Baricitinib was selected to trial by NIH. We agree, Meighan, it is wrong and unacceptable that progress in trialing this basic list has not been made. Science should have moved on to the next phase of more targeted therapies for LC by now, and, instead, research has barely begun. Long Covid research in private and public sectors is severely lagging, in stark contrast to the great need of millions of people with LC. At this point, no one can honestly say that they didn't know about this need. The scientific ignorance and delay are deliberate.
It's simply wrong & unacceptable that this list of potential #LongCOVID drug repurposing candidates is essentially the same list that any patient-advocate living with this condition could have scribbled on the back of an envelope years ago, during the Biden administration.
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