By Letícia Soares and Jennifer Curtin
While research and clinical trials continue for Long COVID, there are millions suffering right now.
Too often, people with Long COVID hear that since clinical research is still underway, not much can be done for them at this point. We at the Patient-Led Research Collaborative and RTHM Clinic reject this narrative: We believe it is a fallacy that hinders access to care that could provide much-needed symptom alleviation today. There is a large variety of treatment options that can help improve the most common symptoms and conditions that occur in Long COVID and help patients regain some quality of life.
These treatment options are grounded in a combination of years of clinical practice expertise in infection-associated chronic conditions (IACCs) and the continuously developing evidence space of Long COVID. But navigating those options can be overwhelming and simply inaccessible for people experiencing fatigue, cognitive impairment, and post-exertional malaise.
People with Long COVID also face the pervasive issue of low clinician literacy around their disease and IACC care in general. With only a small minority of physicians feeling “very confident” in treating Long COVID, according to a December 2022 poll, practitioners are often not up-to-date on the potential treatments.
To make exploring currently available treatment options easier, PLRC and RTHM Clinic collaborated to create a treatment guide. This guide is a centralized, evidence-based resource hub that integrates both patient and clinician expertise and lists the supporting references for each treatment.
We designed the document to be a guided conversation starter for people with Long COVID and their clinicians about treatment options that they could try today, while we wait for the results of clinical trials.
This list of treatments is by no means exhaustive, and some of the treatments have stronger supporting evidence than others. The document reflects what we could review up to November 2025, and it will require updates as future studies come out and clinical trials post their results.
Unlike other excellent clinical care guides that have been released in the past year aimed at teaching clinicians how to care for Long COVID and IACCs, we intend for our new guide to support patients and clinicians in navigating current treatment options and making the best out of a brief 15-minute healthcare appointment. We also hope this guide will help educate clinicians on options they can offer to patients and break misconceptions about the current Long COVID care landscape. Now more than ever, with so many Long COVID clinics closing, a growing number of primary care providers are tasked with caring for people with the disease.
Lack of medical education on the current evidence base is among the drivers of the Long COVID care crisis, and we hope this guide can play a small role in addressing it. A concise and easy-to-navigate resource can help busy clinicians get up to speed on treatment options and drive collaborative healthcare decision-making with patients.
To reflect the breadth of potential options out there, the guide focuses on 24 prescription medications that can be tried for Long COVID. It also includes a few procedures, supplements, over-the-counter medications, and lifestyle interventions. We hope the guide provides options that would suit a range of clinical presentations and risk tolerance levels.
For example, the guide includes several treatment options for mast cell activation syndrome (MCAS), which is common in Long COVID: from low-cost antihistamines with high safety profiles to emerging therapies like glucagon-like peptide-1 (GLP-1) receptor agonist drugs.
Each page of the guide includes a reminder to talk to a clinician before starting any new treatments, since each person’s case is unique. They might discuss contraindications, meaning reasons why taking a drug is not recommended, drug-drug interactions, drug-condition interactions, allergies, and side effects. Also, because a significant portion of people with Long COVID tend to have sensitivities and allergies, starting any new treatment at a very low dose and tapering up gradually as the person tolerates the dose increases can be a good strategy to discuss with one’s provider unless specifically indicated otherwise.
Each page of the guide includes a reminder to talk to a clinician before starting any new treatments, since each person’s case is unique.
Since there are no Food and Drug Administration (FDA) approved treatments for Long COVID currently, all treatments in the guide must be prescribed for off-label use. We acknowledge that most of the treatments don’t have large, robust clinical trial data behind them — which is a statement in itself on current and historic underfunding of clinical trial research of Long COVID and IACCs. However, one in five prescriptions in the U.S. are already written for off-label use, and a growing body of smaller studies supports the use of many of these treatments.
Every treatment in the guide is supported by multiple sources, and we prioritized treatments backed by evidence from studies demonstrating efficacy in clinical trials or from clinical case series and reports. We also used evidence from the Harvard–Stanford TREATME study, which assessed the experiences of over 3,900 people with Long COVID and/or myalgic encephalomyelitis (ME) for over 150 treatments. We included treatments that the TREATME study found moderately or significantly improved symptoms in at least 20% of respondents with Long COVID. Additionally, we prioritized interventions that both experienced clinicians and patient experts found benefited at least a subset of people with Long COVID, and highlighted when treatments are listed in other clinical guides.
Many patients and clinicians may be averse to the idea of trialing a long list of medications until they find something that works, and may reasonably prefer to wait until we have clinical trial results and FDA-approved treatments. However, it is worth noting that even when there is more evidence from clinical trial data, the process for treating other chronic conditions is not dissimilar, requiring clinicians and patients to navigate unclear treatment paths. Moreover, every person is different, and in complex chronic conditions it is common that what works for one person may not work as well for another.
For example, even though migraines have over 30 FDA-approved treatments, finding the medication or combination of medications that works for a given person still requires a significant amount of trial and error. It is also possible that, in the near future, we may have a dozen FDA-approved treatments for Long COVID that require a trial process to discover which one a patient responds to best. Ultimately, we hope research will advance to the point where we will be able to pair biomarkers and clinical subtypes with specific medications and streamline finding the right treatment.
We want to thank all the patients and clinicians who reviewed the treatment guide and provided their feedback — we know your energy and time are precious and are grateful for your input!
Ultimately, we hope research will advance to the point where we will be able to pair biomarkers and clinical subtypes with specific medications and streamline finding the right treatment.
The PLRC-RTHM Long COVID Treatment Guide can be found at rthm.com/treatmentguide.
Dr. Letícia Soares is a Brazilian biologist who has been living with Long COVID since April 2020. She coleads the Patient-Led Research Collaborative.
Dr. Jennifer Curtin is the co-founder and Chief Medical Officer of RTHM. She is an Internal Medicine physician with lived IACC experience and is a member of ISMCAS, the ME/CFS Clinician Coalition, and #MEAction’s Scientific & Medical Advisory Board.
Editor’s note: PLRC, like The Sick Times, has received support from the Balvi and Kanro funds. Our newsroom operates independently of financial supporters.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
More commentary articles
- A new aid in the doctor’s office: Introducing the Long COVID Treatment Guide
- My child and I both have Long COVID. Even in COVID-aware spaces, we are excluded because of their pre-existing disability.
- How to write an op-ed about Long COVID
- “Invisible Illness” could have been transgressive. Instead, it minimizes Long COVID.
