Are research and education on Long COVID translating into better treatment and care for those with Long COVID, ME/CFS,
and related conditions? 

The answer is yes—though progress is painfully slow. Still, I see significant forward movement, and I remain hopeful. The number of scientists and clinicians engaged in Long COVID and comorbid conditions continues to grow.

While these advancements have not yet reached most community medical providers, we are seeing real changes within academic centers and federal agencies. It is critical that we continue to advocate for the support needed to sustain this momentum. 

Progress in Clinical Research and Education 

As I’ve shared in previous blog posts, I have been a clinical research consultant for the RECOVER COVID Clinical Trials for nearly two years, serving on the steering committee and helping design various protocols. One of my key roles has been as co-chair of the ENERGIZE pacing protocol, a study supervised and funded by the NIH.

These clinical trials are led by academic specialists across the country in infectious diseases, neurocognitive effects, sleep disorders, and cardiopulmonary complications of COVID—including exercise intolerance. Many of these experts have never encountered post-infectious syndromes like ME/CFS before, and there is a steep learning curve.

I have been working alongside them, sharing insights from decades of ME/CFS clinical care and research. The ENERGIZE study, which includes personalized cardiopulmonary exercise and pacing interventions, faced initial resistance from the public. However, it will not only validate the effectiveness of these interventions but also train rehab and research staff at academic sites across the country. These professionals are learning firsthand about post-exertional malaise (PEM)—how to recognize it, implement safe interventions, and work directly with patients. This hands-on education is the most powerful way to create lasting change in clinical practice. 

A Notable Example: The University of Washington 

One exciting example of progress is my Co-Principal Investigator on the ENERGIZE pacing protocol, Janna Friedly, MD, MPH. She is a physical medicine and rehabilitation (PM&R) specialist who leads the Long COVID clinic at the University of Washington (UW)—one of nine NIH-funded Long COVID clinics in the AHRQ Long COVID Care Network.

Dr. Friedly and her multidisciplinary Long COVID rehabilitation team at UW have recognized ME/CFS and integrated Bateman Horne Center (BHC) educational materials into their clinical approach. These resources were also included in the training of pacing coaches for the ENERGIZE trial under Dr. Friedly’s leadership. 

Dr. Friedly is also Editor-in-Chief of the PM&R Journal of Injury, Function, and Rehabilitation, the journal of the American Academy of Physical Medicine & Rehabilitation (AAPM&R). Since 2021, AAPM&R has led a multidisciplinary effort to create clinical guidance for Long COVID, developing consensus documents on neurological symptoms, autonomic dysfunction, cardiovascular complications, cognitive issues, breathing discomfort, fatigue, and mental health.

AAPM&R Long COVID Clinical Guidance: AAPM&R Multidisciplinary Quality Improvement Initiative 

Expanding Medical Provider Education 

Another key initiative is the CDC-funded ECHO program, which provides virtual education for medical providers on Long COVID. Importantly, the funding mandates that discussions also include ME/CFS and related conditions.

More about the ECHO program: Long COVID & Fatiguing Illness Recovery Program

In 2022, Bateman Horne Center became an ECHO Hub through the Project ECHO Program, enabling us to use a trusted source of medical education for clinicians worldwide. The Long COVID and Post-Infectious Syndromes Project ECHO is co-hosted with the University of Utah Health and focuses on equipping clinicians with the knowledge to diagnose and use evidence-based interventions for both Long COVID and ME/CFS. Access the recorded lectures here: Bateman Horne Center Long COVID and Post-Infectious Syndroms Project ECHO 

The Ripple Effect of Progress

These examples highlight how the work of a few dedicated individuals can multiply, creating a broad network of expertise. 

Change takes time—it’s like planting seeds, nurturing them, and waiting for the harvest. 

Advocates for ME/CFS, fibromyalgia, dysautonomia, mast cell activation syndrome (MCAS), and related conditions have been actively involved in shaping Long COVID research and education. Long COVID is receiving funding and attention, and we must ensure this momentum benefits all post-infectious and complex chronic conditions. 

Looking Ahead 

While we all hope for definitive treatments, we must acknowledge that cures take time; but compassionate, informed medical care should not be out of reach. The most critical work right now is educating the entire medical establishment on how to recognize, diagnose, and manage these conditions—not just for those affected by Long COVID, but for everyone suffering from these illnesses before, during, and after the COVID-19 pandemic. 

We’re not there yet, but progress is happening. As I have said many times, the emergence of Long COVID has created an opportunity—and the funding—to drive change that will benefit ME/CFS and other related conditions. We must use our voices and influence to ensure this work continues. 

Key Terms 

• Principal Investigator (PI) – Lead researcher overseeing a clinical trial
• PM&R (Physical Medicine & Rehabilitation) – A specialty focusing on rehabilitation and functional recovery
• AAPM&R – American Academy of Physical Medicine & Rehabilitation 
• ECHO (Extension for Community Healthcare Outcomes) – Online case-based medical provider education 
• LC&FIRP (Long COVID & Fatiguing Illness Recovery Program) – A program focused on provider education and support