Far From Rare: A Common Disease Hidden in Plain Sight

Why ME/CFS Needs to be Recognized Now

February often brings conversations about rare diseases—conditions affecting fewer than 200,000 people in the U.S. ME/CFS doesn’t fit that definition. Yet, we chose to highlight it during Rare Disease Month not because it is rare, but because it remains rarely acknowledged, underserved, and underfunded in both the medical and research communities. 

With an estimated 5 to 9 million people affected in the U.S. alone—and many more meeting diagnostic criteria following COVID-19—ME/CFS is far from uncommon. The real challenge isn’t how many people have it, but how often it is misunderstood, overlooked, and left out of mainstream medical care. 

The Reality of ME/CFS: A Common Disease, Rarely Acknowledged 

Despite its widespread impact, up to 90% of people with ME/CFS remain undiagnosed, often after years of searching for answers. Many experience medical gaslighting, misdiagnoses, and treatments that fail to account for the disease’s hallmark symptom: post-exertional malaise (PEM)—where even minor exertion can lead to debilitating symptoms and functional decline. 

The consequences are staggering: 

• One in four people with ME/CFS is bed- or housebound, unable to fully participate in daily life. 
• The economic burden reaches up to $51 billion annually in healthcare costs and lost productivity. 
• Despite its prevalence, ME/CFS receives only a fraction of the research funding compared to diseases with similar burdens. 

While progress is being made, it is slow and often siloed. Experts with years of field experience struggle to secure the funding needed to accelerate research and expand access to care. 

Changing the Tide 

For decades, patients with ME/CFS have faced: 

• Gaps in medical education, leading to delayed diagnoses and outdated treatment recommendations. 
• Minimal research funding, limiting advancements in diagnostics and clinical trials. 
• Persistent stigma, with ME/CFS historically mischaracterized as psychological rather than a complex, multisystem disease. 

Now, with greater awareness of post-infectious conditions following COVID-19, ME/CFS is finally gaining long-overdue recognition. But awareness alone isn’t enough—this momentum must lead to real change. 

The Path Forward: Turning Awareness Into Action 

If Rare Disease Month reminded us of anything, it’s that neglect isn’t limited to rare conditions. Millions of people with ME/CFS have spent decades being overlooked. The road ahead must focus on: 

• Medical education and training – Healthcare providers need up-to-date knowledge on ME/CFS and post-infectious conditions to improve diagnosis and care management. 
• Research funding that matches the need – Investment must reflect the scale of the crisis, driving better treatments and, ultimately, a cure. 
• Compassionate, evidence-based care – Patients deserve to be heard, believed, and treated with the same dignity and expertise as those with other complex conditions. 

BHC’s Role: Paving the Way for Change 

For nearly a decade, the Bateman Horne Center (BHC) has been a driving force in ME/CFS research, medical education, and patient-centered care—advancing understanding, improving clinical approaches, and pushing for systemic change. Long before post-infectious conditions gained broader recognition, BHC was pioneering solutions for patients who had long been overlooked.

Today, as millions more face post-infectious disease following COVID-19, our expertise is more vital than ever. We remain steadfast in our mission to drive progress, expand access to care, and advance the science needed to change lives.  

Be a part of the change! 

🔹 Share this message. 
🔹 Educate your community. 
🔹 Support organizations working to drive progress. 

Every person deserves access to knowledgeable care, meaningful research, and a medical system that sees and supports them.