"The Guide explains how each treatment may be helpful.. type of LC patient it may help, provides dosages.. study evidence, citations, and in a helpful twist, a list of other ME/CFS and #LongCovid guides which support using the treatment. All of that in a compact, attractive format."

From @cortjohnson.bsky.social: “The free @rthm.bsky.social & @patientled.bsky.social #LongCovid Treatment Guide is one of those publications that makes you wonder, ‘Why hasn’t this been done before?’ A succinct, evidence-based guide drs can quickly turn to learn about LC treatments.”

New paper in @thelancetinfdis.bsky.social from PLRC by @chloedecanson.bsky.social, @leticiasaurus.bsky.social, @chromatowski.bsky.social / @romatowski.bsky.social and Gina Assaf: "The case for routine patient review in #LongCovid research.” 🧵1/11

"Long COVID received 14% of its disability commensurate funding... ME/CFS is the most under-funded condition, receiving <1% of its YLD [years lived with disability] proportionate funding." Plus the LC disability weight of 0.21 likely underestimates its burden. www.nature.com/articles/s43...

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Those researchers who routinely do patient involvement know the value of the insights of the people who actually have the disease To enable involvement of pwLC at all stages of research @longcovidsupport.bsky.social offer a Research Involvement Consultancy service. www.longcovid.org/research/res...

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Yes. Now.

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A total pleasure to collaborate on this with a @patientled.bsky.social team: @chloedecanson.bsky.social, @leticiasaurus.bsky.social, and @ginaassaf.bsky.social !

I esp want to highlight the last line: “Routine patient review could also serve as a model for incentivising patient involvement in research across other infection-associated chronic conditions and beyond.” We focused on the case of Long COVID, but think the model has potential well beyond it!

Thrilled we have this new Comment out in @thelancetinfdis.bsky.social, arguing that to give Long COVID scientists more incentive to incorporate patient expertise throughout the research process, LC papers should all be subject to pre-publication review by patients. Free to read w/registration!

Wow, this is an incredible contribution.

The paper is available to read for free (if you register) here: www.thelancet.com/journals/lan... 12/12.

Thanks to the fantastic author team @leticiasaurus.bsky.social, @romatowski.bsky.social @chromatowski.bsky.social, and Gina Assaf, all from the Patient-Led Research Collaborative (@patientled.bsky.social). 11/

In sum, routine patient review for all manuscripts has the potential to increase patient participation in science, incentivise uptake of our expertise, and thus improve scientific outputs, bringing us closer to finally achieving approved treatments. 10/

Pairing experienced and newer patient reviewers could help with training and building confidence, thereby broadening access to scientific participation for patients and expanding the pool of potential patient reviewers for editors. 9/

The patient review process must be accessible to sometimes very sick people. The pool of patient reviewers must be equitable, and must reflect the composition of the patient population at large. Remuneration for patient review, as practised by the @bmj.com, would support this goal. 8/

Indeed, anticipation of patient-expert scrutiny at the review stage creates a clear incentive to design and conduct studies that patients will deem methodologically sound and relevant, which in turn incentivises meaningful collaboration with patient-experts throughout the research process. 7/

We make a proposal: we believe that *routine* patient review for *all* manuscripts on Long COVID would create a clear incentive for institutional researchers to preemptively consult with and integrate feedback from patient researchers. 6/

Despite this, people with Long COVID are still frequently excluded from research, or included in ways that fail to integrate their expertise. Structural incentives are therefore needed to ensure that institutional researchers engage patient expertise meaningfully throughout the research process. 5/

In Long COVID, patient-researchers defined Long COVID, established it as a disease in the scientific literature, and published numerous subsequent papers on epidemiology, study and trial design, pathophysiology, and public health. They shaped scientific research on the disease. 4/

We have already seen this in HIV/AIDS and in other infection-associated chronic conditions (IACCs) like ME, wherein institutional researchers conflated fatigue with post-exertional malaise (PEM), despite these features of the disease having little in common with one another. 3/

Patient expertise is always essential to research on a disease, and especially so when the disease at hand primarily affects women and/or marginalised populations, is stigmatised, and is underfunded and thus insufficiently understood. 2/

Many Long COVID scientists fail to meaningfully draw on the insights of patient-researchers. In our Comment for @thelancetinfdis.bsky.social, we propose a solution: make all Long COVID papers undergo pre-publication patient review. 1/

The Long Covid Awareness Month resolution is a great chance to start building those relationships with the offices of your Members of Congress—take this reso as a conversation-starter that can initiate a relationship and begin building toward more concrete action! 9/9

Some of the biggest advances for Long Covid and other IACCs have come because advocates had invested in developing relationships w/their Rep’s office, which we were able to call on to support our asks. If we had many more such relationships, it’d go very far toward action for us in Congress. 8/

Resolutions like the one to recognize Long Covid Awareness Month are an important opportunity to form a connection with your Member of Congress’s office, which can pave the way for further action! 7/

The benefits of meeting w/your Rep’s office go beyond this resolution. As RA notes, “Even if your meeting results in no immediate action, you have made a new connection and raised awareness. Those seeds may not bear fruit right away, but if you sustain these connections, they will bear fruit!” 6/

The org @researchamerica.bsky.social has a terrific quick-start guide to scheduling and leading 10-min meetings w/staff in the offices of your Members of Congress. Research!America works on biomedical funding broadly but their instructions can be easily adapted to Long Covid in particular. 5/

Calls & emails to your Reps will help advance the Long Covid Awareness Month resolution and raise the profile of LC as an issue. If you’re ready to go further, you can also ask for a short meeting w/health staff in your Rep’s office, to share your LC experience and ask for support for the reso. 4/

Additionally, anyone can ask their Representative, regardless of Committee, to cosponsor the resolution to recognize Long Covid Awareness Month. It doesn’t have any cosponsors yet—let’s change that! 3/

The resolution to recognize Long Covid Awareness Month is being heard in the House Energy and Commerce Committee! Here’s a list of committee members—especially if your Representative sits on the committee, ask them to support the resolution! 2/

Some #LongCovid news—Rep. Valerie Foushee has introduced a resolution to recognize Long Covid Awareness Month! 🧵 on how you can support this resolution—and help pave the way for further action!

Breen also answered the funding question live, saying RECOVER-TLC intends to "have funds to support additional trials, but the scope will depend on how many we could potentially add." This is a similar response to what he told me in September during the 2025 TLC meeting -- still no specific $$ info.

In response to a question about the community advisory board, Breen said RECOVER-TLC will ask the board members if they are comfortable having their names being shared publicly. "We intend to be transparent, we just need to check" about their comfort with being public, he said.

Marconi says that trial participants have given good feedback about their experiences in the study so far. Some challenges include getting documentation of SARS-CoV-2 tests, concerns about side effects of baricitinib, people living far away from trial sites.

REVERSE-LC recruitment is going well! They have 163 people randomized as of last week out of 550 total in the study. New sites supported by RECOVER-TLC are quickly coming online, and a couple of people have already been enrolled at those.

REVERSE-LC has a bunch of study outcomes, including CPET testing, tilt table/autonomic function testing, and exploring potential viral persistence biomarkers. Marconi noted that many trial participants meet criteria for POTS but are often undiagnosed.

Vince Marconi from Vanderbilt is giving some updates on the REVERSE-LC trial. This trial was originally funded by the National Institute on Aging; support from RECOVER-TLC has enabled it to expand to more trial sites and recruit more quickly.

Notably, Meghan Pennini from FNIH (who presented this slide and another one on the advisory board) did not say who the board members are or how they were selected.

RECOVER-TLC has a new community advisory board, which includes 12 patients, caregivers, and community reps. This group is meeting regularly, providing feedback on trials, developing resources for the community (like recruitment materials), and considering how to make trials accessible.

The RECOVER-TLC portal for treatment suggestions is still taking new submissions. They will also reassess prior submissions if new data become available in support of a particular treatment. Link: customervoice.microsoft.us/Pages/Respon...

RECOVER-TLC plans to publish summaries of the public comments they receive on trial protocols, "to let people know that their time and energy is being utilized to improve the protocol process," says Joseph Breen from NIAID.

Current progress on the trials: GLP-1: Protocol is nearly done LDN in children: Protocol went through public comment, now in the process of finalizing REVERSE-LC/Baricitinib: Still recruiting SGB: Protocol just went through public comment

RECOVER-TLC is hosting another webinar today, sharing updates on the Long COVID clinical trials program. I will do some live blogging here and might have further writing at @thesicktimes.org (if they share anything newsworthy).

Couple of notable Q&As from the chat - IVIG timing, overall funding for RECOVER-TLC. (h/t @ezra.zone on the funding one)

This may not sound like much but for state-level action to work, the effort needs signatories from each state, so you can make a difference lending your name, and by passing this along to friends who might be able to do the same!

Super-easy action for US ME/CFS folks: Solve and MEAction are sending letters to state medical boards and chief medical officers to ask for their help improving medical education and care for ME/CFS, and you can co-sign! That’s it, just add your name! Do so here: tinyurl.com/StateMedicalBoardForm

Today for #MECFSAdvocacyWeek: add your name to letters to State Medical Boards & Chief Medical Officers. Community sign-on: tinyurl.com/StateMedicalBoardForm Clinicians: tinyurl.com/ClinicianSignOnForm Share our posts: tinyurl.com/MECFSThursdaySocials Optional Zoom at 3 pm ET. Solve M.E. #p#MECFSAdvocacyWeek#pwME