Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the coming weeks.
Read more at The Sick Times:
https://thesicktimes.org/2026/08/18/congresss-2027-budget-could-include-new-funding-for-long-covid-and-me/
This is huge news.
Various studies have strongly suggested gut viral persistence, but to my knowledge this is the first one that’s truly come out and documented it.
The amazing researchers at UCSF’s LIINC program, who began as HIV researchers and expanded their work to Long COVID, have just published this groundbreaking preprint.
They found single- and double-stranded viral RNA in cells lining the intestine. Because these cells normally turn over within days, this means that the viral RNA is being newly produced- it’s not just leftover from acute infection.
(When scientists use the phrase “turn over” in the context, this means that all of the cells that were present replicated to form new cells and then died off. This means that all of the cells in that cell type are completely replaced by new cells within days).
So they found viral RNA that had been newly produced.
They also found signs that the immune system was struggling to clear the virus. Part of the immune system was trying to fight, yet key parts of the response were also being suppressed by the virus itself - meaning the immune system was locked trying to perpetually fight a battle that it could not win.
This is really huge news. While this research is still only in preprint form, this team has a great reputation and has been published in many high-level journals such as Nature and The Lancet, so we have every reason to believe this work will eventually pass peer-review as well.
The evidence base here also strongly supports the rationale for immunomodulatory treatments which as Antkiva, as this may help to overcome the ways in which the virus is suppressing the immune response.
All in all, this is fantastic work and we’re so glad to see it!
What does everyone think- does this fit with your understanding of what Long COVID is? How do you think the virus might be hiding from the immune response?
Let us know what you think!
Paywall free version: https://archive.is/NIGhp
Hey all,
Thank you so much for all of your insightful comments on our last post.
In case you’re just catching up, this summer the FDA put out a call for public comment on the possibilities of repurposed medications, particularly to treat rare diseases.
They originally put out a call for written comments, and ultimately received such a positive response that they ultimately convened a hybrid meeting on Aug. 5.
You can view the meeting slides here, and we also shared a summary in our last post.
While we of course believe all rare diseases are deserving of attention, we were particularly excited to see that ultimately, 25% of the comments they received were about Long COVID! Our community really showed up, and it’s so important to continue to put LC on the map.
In the next step, the FDA is now accepting additional public comments through Aug. 21st.
Dr. Caroline Huang noted that from this point forward, they are looking for answers to the 3 questions in the slide above (slide 6 in the presentation).
These questions are:
•What are examples of successful prioritization approaches from other programs or jurisdictions that could be adapted?
•What factors should guide repurposing candidates, and how should they be prioritized?
•What evidence gaps or policy/regulatory barriers most hinder promising repurposing opportunities?
*****
**Note: during the presentation, Dr. Caroline Huang noted that they are not looking for additional medication recommendations in this round of comments. Rather, they are specifically focused on these three questions, as the second stage of this initiative.
**Note 2: the FDA’s definition of repurposed medications as a regulatory pathway is slightly different than what we might think in terms of everyday speech. If you check out slides 15-16, they describe the criteria there - they are specifically referring to medications that are off-patent and don’t currently have commercial interest.
Believe it or not, many of the candidates that are being studied for Long COVID wouldn’t fit here, as medications like Pemgarda, Anktiva and Ampligen are all patented, and have companies sponsoring them.
That doesn’t mean you should not speak up- I just share this so you can make the most effective comment with the information at hand.
You can send comments to repurposing@reaganudall.org
Feel free to workshop any comments/request feedback from the community in the space below! We are in this together :)
Hi everyone,
As many of you know, we've been sharing several updates over the past few months on the FDA's intiatives on Repurposed Medications.
The FDA, together with a nonprofit called the Reagan-Udall Foundation, first put out a call for public comment in June. They had such a positive response that they ultimately extended the deadline for another month, and then held this meeting on Wednesday.
You can view all of the presenter slides from the meeting here.
As Dr. Caroline Huang explained in her presentation, the organizers received over 600 comments, and around 25% of all of those comments were focused on Long COVID!
While of course, we support all rare diseases receiving attention, we're proud of the LC community for showing up and speaking up for our disease.
Above, we included a screenshot of Dr. Huang's slide of the Long COVID results (slide 75 in the presentation).
Each time an individual commenter mentioned a drug, it counts as a recommendation, so you can see what the most popular recommendations were in the chart.
For those who may find a text summary easier, the slide says
With a total of 23 different recommendations total.
Long COVID Labs submitted a comment, where we mentioned pemivibart (Pemgarda) as well as a few other medications not shown on this slide: sipavibart, Paxlovid, and the valacyclovir/celecoxib combination being studied by Drs. Pridgen and Putrino.
We also told the story of how our founder Rohan was cured by a combination of Evusheld monoclonal antibodies and Paxlovid. (You can see what we wrote here!).
It turns out that the FDA's specific regulatory pathway for Repurposed Drugs would actually not apply to many of these - this pathway is only intended for drugs that are off-patent, with limited commercial interest. So monoclonal antibodies like Pemgarda and sipavibart, or antivirals like Paxlovid and ensitrelvir would not be eligible for this *specific* pathway, as they are still under patent, and thankfully, it actually *does* appear that there has been commercial interest in studying them for Long COVID.
However, it is still incredibly important that we showed up as a group as put Long COVID on the map!
As the next step, the conference organizers will review all of the submitted materials, as well as public comments made at the conference.
In addition, they are still accepting written public comments through Aug. 21. (Note: they mentioned at the conference that this new deadline is for comments in response to the meeting - it is not meant as an extension of the original public comment period which ended in July. So they are not looking for *new* medication recommendations, rather they're looking for people to elaborate on the questions raised in slide 6).
More info and instructions for submission here.
Long COVID Labs will be submitting an additional comment, in response to everything we learned at the meeting. We'll be sure to share it here as well.
Thank you again to everyone who showed up!