Takeaways from RECOVER-TLC 2025

Progress, Challenges, and Patient Power

Long Covid, MD Podcast Episode #55. Click PLAY BUTTON to listen.

Last week I tuned in to the second annual RECOVER-TLC Workshop on Long COVID. I wasn’t able to watch every session live, as one of my children developed appendicitis at the same time. Luckily, kiddo is doing well (thanks to a kind medical team) and the RECOVER workshop recordings are available online. As I make my way through all of the presentations, I’m also comparing notes with scientists and patients who participated. Let me share my first few impressions.

RECOVER’s Impact

First, a little context: RECOVER (REsearching COVid to Enhance Recovery) is a major NIH-funded research initiative created to better understand, prevent, and treat Long COVID. Within RECOVER, the TLC arm — which stands for Treating Long COVID — is focused on identifying and testing therapies that could actually help patients. The 2nd annual workshop was supported by the National Institutes of Health (NIH) together with the Foundation for the NIH (FNIH), a nonprofit that helps coordinate public–private partnerships to advance medical research. The National Institute of Allergy and Infectious Diseases (NIAID) also played a role, reflecting how central long COVID is to ongoing infectious disease research. The workshop brought together researchers, clinicians, and patients to review what’s been learned so far, share updates on ongoing studies, and discuss priorities for the next phase of trials. So far, RECOVER has been allotted over $1 billion.

Interventions Under Study

The workshop highlighted several interventions as priorities for RECOVER-funded research:

• Low-dose naltrexone

• Baricitinib

• GLP-1/GIP receptor agonists

• Stellate ganglion blocks

Whether these are the right targets for RECOVER funding is debatable, but I think they are reasonable. They are already used as off-label treatments for long COVID, with varying anecdotal results. All have potential indications in children, with the LDN study particularly focused on adolescents. While already in use, these interventions are currently prescribed for long COVID without standardization, and outcomes have not been systematically studied enough. I think it’s worthwhile — and necessary — to study them in standardized ways.

Not everyone agrees with me. Some argue that, because these interventions are already available to the public and have not provided consistent relief, we should instead turn to novel therapeutics. A specific concern is that, because these treatments are already on the market, it may be difficult to recruit study subjects. Why would someone enroll in a study that gives a 50/50 chance of treatment, when they can access it on their own and bypass the chance of placebo? It’s a reasonable question, but I think it reflects the overlapping demographic of people who can afford to participate in a clinical study (time, proximity to academic centers, transportation, baseline health), and those who can afford off-label treatments. How we can broaden study participation is a major concern.

The truth is, although these interventions are technically available, they are not broadly accessible. I hear every day from people whose medical providers, in the absence of established guidelines, are unwilling to prescribe treatments. Even with a prescription, therapies can be prohibitively expensive. They are not always covered by insurance, because they are not yet indicated to treat long COVID. These obstacles might be cleared by research from established institutions and the support of federal health agencies. So while it’s true that we need more than this…we also need at least this.

Patient Voices at the Center

RECOVER’s workshop displayed the relentless efforts of patient advocates. They (we) are bulldogs — nipping at ankles, making sure the right people feel the pressure to act. People living with long COVID sat on every panel of the two-day meeting. Some shared their personal experience with the disease, and others also represented patient-driven organizations like Patient-Led Research Collaborative, Renegade Research, and ILLInet PARATROOPers.

I was especially moved by the voices of Michael Sieverts and Justin Lin, with whom I’ve worked on CURE-ID and RECOVER working groups. Michael is based in DC. He is the former budget director of the National Science Foundation, and has been battling long COVID since 2020; he spoke on his experience as a patient in a clinical trial. Justin, a tech executive, is the parent of a child with long COVID. He has been trying everything he can to help his daughter Serena recover. Serena herself shared her story by video, a testament to her own courage and her family’s dedication.

Joshua Roman, a professional cellist whose career has been disrupted by long COVID, performed and shared his experience with the disease. For me, his poignant story was moving, and reminded me that my grief is still raw in places; I’m not yet distanced enough from my own experience to hear a similar one without an emotional response. I take that as a reminder and a gift. It is also profoundly important for researchers and clinicians in the audience to hear our stories. By sharing their struggles, Joshua, Michael, Justin, and countless others, added something data charts can never fully capture.

Looking Ahead

The conversations on “what we’ve learned” and “where we go from here” were, once again, shaped by patient courage. They’re also shaped by the collaborative ethos of researchers at the top of the RECOVER research pyramid. Public questions were taken during each panel, and both days included town-hall style discussions about the direction of RECOVER.

The questions were not easy. People spoke openly about the slow timeline of research; the possibility of studying combination therapies; and how to disseminate evolving science with healthcare providers, so patients can get relief now.

I agreed with some of the points strongly; on others, I had different perspectives. But what matters most to me is that these concerns were spoken aloud, and addressed directly to researchers and decision-makers. That presence, and that pressure, keeps the science moving in directions that actually serve patients.

More to Come

Those are my initial impressions. I’ll bring you more in-depth perspectives soon, including voices from people who participated in the workshop and in RECOVER working groups. You can also expect deep dives into each of the treatments highlighted, similar to my primer on low dose naltrexone.

The Medicine Cabinet: Low-Dose Naltrexone for Long COVID

For now, I wanted to capture the moments that stood out — the persistence of patients, the promise and pitfalls of current intervention studies, and the urgent reminder that research timelines need to meet the ongoing impact of this disease.

Bye for now,

Zeest