Long COVID is not only a complex and urgent condition affecting millions, it is a disease that still has no well-established medical guidelines for care. How do patients and providers chart a treatment path without evidence-based protocols? In the latest episode of Long Covid, MD, I shared key insights from a recent talk I gave as part of Project ECHO. The webinar, attended by medical professionals, was hosted by the University of Utah and the Bateman Horne Center. It was titled “Navigating Clinical Uncertainty in Long COVID,” and aimed to answer this question: How do we treat patients when we are unsure of outcomes?
*Update* 💡 Access the Recording Now: https://loom.ly/1-0aRy4
In the Project ECHO presentation, I shared the most effective ways medical providers have helped me, despite being unable to cure me. I suggested that clinicians think more broadly about their role as care providers, to use curiosity and creativity to meet patients’ needs. To recover from long COVID, I have tried to match my specific needs to available healthcare resources. That’s what this platform is all about. But that process is challenging and it often feels awkward, for patients and providers alike. Still, it’s been the key to my recovery. I have been navigating uncertain terrain since day one. We all have. And as I prepared my presentation for medical colleagues, I realized I was actually summarizing the guidelines I established for my medical care.
The talk was well-received, and I wanted to share some highlights that may be pertinent to you as a patient. Listen to the full episode here on Substack or your favorite podcast app.
Hyper-Personalize Your Approach
With no universal guidelines for Long COVID treatment, it’s crucial to focus on your unique symptoms and needs.
Let your personal challenges—not generalized advice—guide your treatment plan. I encouraged the medical providers I spoke with to think of themselves as medical collaborators. Without guidelines that apply to all long COVID patients, their role is to help generate a treatment plan to the patient in front of them. Ideally, every long COVID patient has a medical professional to partner with them in this way.
Divide and Conquer
When faced with multiple debilitating symptoms, start by:
- Taking an inventory of your symptoms. This process is difficult. A medical collaborator, caregiver, or friend can be a helpful sounding board.
- Prioritizing the one or two that are most urgent. Yes, I know that’s difficult, too.
- Working closely with your healthcare provider to target those first.
Breaking the problem into manageable parts prevents overwhelm and allows you to make steady progress.
Embrace “Trial and Pivot”
Treat recovery as a process in which experimentation is safe and targeted, and results are used to help guide the next step.
- Set Intentions: Understand why you’re trying a specific treatment, what outcomes you expect, and what side effects are acceptable.
- Focus on Benefit: Frame treatments as “beneficial” and “not beneficial” instead of “cures” and “failures.”
- Adjust Accordingly: Use the results of each treatment trial as data to guide your next steps.
Approach this process with curiosity, not frustration. Recovery is rarely linear, but every pivot brings you closer to what works for you.
Prioritize Symptom Relief
While researchers work toward finding a cure for Long COVID, it’s okay to focus on symptom management. Relieving your most urgent symptoms can improve your quality of life, giving you the strength and clarity to tackle the next challenge.
I don’t track every esoteric article on viral protein shards and I happily admit it, because these findings typically do not change my clinical course.
Seek Collaboration and Support
Navigating Long COVID is tough to do alone. Build a team of:
- Healthcare providers who understand your needs.
- Caregivers or loved ones who can observe patterns in your symptoms.
- Support groups or communities who share insights and encouragement.
Final Thoughts
Recovery is a marathon, more likely an ultrarun (don’t believe me? listen to my interview with a long COVID ultrarunner). By dividing the challenge into smaller, actionable steps and focusing on what’s most urgent, you can reclaim parts of your life while waiting for broader answers.
These are simple suggestions, but they are not easy! I invite you to approach this journey with patience, persistence, and hope. Together, we can navigate the uncertainty of Long COVID and find ways to live more fully.