As a mother who has watched my child suffer with ME/CFS for ten years, I felt a complex mix of validation and heartbreak reading the groundbreaking study published in JAMA Pediatrics. Finally, researchers are documenting what I’ve witnessed firsthand: viruses can trigger devastating, chronic illness in children, even babies and toddlers. But this validation comes with the bitter knowledge of how long it has taken for the medical community to take post-infectious illness in children seriously. 

The Study That Should Change Everything
The research, part of the NIH-funded RECOVER initiative, followed over 1,000 children across 30 medical centers from March 2022 to July 2024.  

The findings are stark:  

14% of infants under age 2 and 15% of children aged 3-5 experienced persistent symptoms lasting at least three months after COVID-19 infection. 

Ten Years of Fighting for Recognition
I am deeply grateful to the researchers behind this study and their work developing a research index for children with Long COVID. This kind of rigorous, systematic approach to studying post-infectious illness in children has been desperately needed for far too long. 

For ten years, I have watched my daughter battle ME/CFS. I have been her advocate, her voice when she was too weak to speak, and her shield against a medical system that too often dismissed her very real suffering. The lowest point came when she was unable to swallow, yet medical professionals implied she had an eating disorder. As I watched my child struggle with symptoms that were clearly physical being labeled as psychological, I felt like a volcano about to erupt. 

The moment that will forever be seared into my memory was when my daughter asked me,
“What happens to children who didn’t have a doctor mom fighting for them?”

That question haunts me because I know the answer: too many suffer in silence, misdiagnosed, dismissed, or told their symptoms are in their heads when they are undeniably real and devastating. We are running as hard and as fast as we can at The Bateman Horne Center to fill in these gaps in knowledge and care.  

The Parallels We Cannot Ignore
What strikes me most about this Long COVID research is how it mirrors what we’ve known about ME/CFS for decades. Post-infectious illness doesn’t discriminate by age. The biological mechanisms that allow viruses to trigger chronic, debilitating conditions can affect anyone—including babies who cannot even verbalize their suffering. 

These infants experiencing persistent symptoms after COVID-19 may be developing the same kind of post-infectious syndrome my daughter has lived with for a decade. The difference is that now, more researchers are paying attention.  

What This Means for All Our Children 
This study represents a critical turning point. For too long, children with post-infectious illnesses like ME/CFS have been medical orphans—suffering without proper recognition, research, or treatment options. The fact that we now have robust data showing that even babies can develop chronic, debilitating symptoms after an infection should be a wake-up call to the entire medical community. 

We desperately need: 

• Better diagnostic tools for identifying post-infectious syndromes in children of all ages 

• Long-term follow-up studies to understand how these conditions progress over time 

• Research into the biological mechanisms that allow viruses to trigger chronic illness 

• Healthcare provider education about recognizing and validating post-infectious symptoms 

• Support systems for families navigating these complex, often invisible illnesses 

• An end to the dismissal of children’s symptoms as psychological when they are clearly physical 

A Message to Fellow Parents 
To the parents whose children developed persistent symptoms after COVID-19: you are not imagining it. Your child’s suffering is real. Your concerns are valid. Do not let anyone convince you otherwise. This research proves that post-infectious illness in children is measurable, significant, and deserving of serious medical attention. 

Fight for your child. Document symptoms. Seek specialists who understand post-infectious conditions. Get the accommodations and modifications your child needs for school.  

Connect with other families going through similar struggles. And remember that your advocacy matters—it may be the difference between your child getting help or suffering in silence.  

A Message to Fellow Medical Professionals
To the medical professionals reading this: please listen to parents. Please take persistent symptoms seriously, especially after an infection. Please remember that children cannot always articulate complex symptoms, and their suffering may manifest in ways that seem behavioral but are actually physical. Please don’t be the person your child forever remembers as trivializing their pain.  

The Future We Must Fight For 
My daughter’s question about children without advocate parents drives my passion for this issue. Every child deserves to have their suffering recognized and addressed, regardless of whether their parent is a medical professional. This research is a step toward that future, but it’s only the beginning. 

This passion led me to the Bateman Horne Center, where I now work as an internal medicine and pediatric physician, working to change the narrative around ME/CFS and post-infectious illnesses. 

Changing the Medical Landscape
At BHC, we’re not just talking about the need for change—we’re actively creating it. We recently published a comprehensive Clinical Care Guide that helps healthcare providers recognize, diagnose, and treat ME/CFS appropriately. This guide represents years of clinical experience and research, distilled into practical tools that can help providers avoid the mistakes that led to my daughter being misdiagnosed. 

We also run educational programs for healthcare providers, teaching them to recognize the signs of post-infectious illness and understand that these conditions are real, measurable, and manageable. Every provider we educate could be the one who believes in the next child instead of dismissing them. 
 
We see children at our ME/CFS clinic. We provide the specialized care that families like mine have desperately sought. We listen to children’s symptoms, we validate their experiences, and we work to improve their quality of life using evidence-informed approaches.

We need continued funding for post-infectious illness research. We need medical education that teaches providers to recognize these conditions. We need support systems for affected families. And we need a medical culture that validates rather than dismisses the experiences of children with chronic illnesses. 
 

The 15% of babies and toddlers experiencing Long COVID today represent both a tragedy and an opportunity.Their documented suffering could finally lead to the understanding and treatments that children like my daughter have been waiting for far too long. 

The data is clear. The need is urgent. Our children cannot wait another decade for answers. 

How You Can Help 

The work we’re doing at the Bateman Horne Center is making a real difference, but we need your support to reach more children and families. Your donation can help us: 

• Expand our clinic to serve more children who are currently without specialized care 

• Develop additional clinical resources for healthcare providers who want to better serve patients with post-infectious illness 

• Continue our provider education programs that are changing how ME/CFS and Long COVID are understood and treated 

• Support research initiatives that could lead to better diagnostic tools and treatments 

• Advocate for policy changes that improve access to care for all patients with ME/CFS and Long COVID 

Every dollar donated helps us move closer to a world where no child has to suffer in silence, where no parent has to fight alone, and where post-infectious illness is recognized and treated with the urgency it deserves. 

Please consider making a donation to the Bateman Horne Center today. Together, we can ensure that the children developing Long COVID today receive better care than my daughter did ten years ago. 

Donate Here

If you’re a parent dealing with post-infectious illness in your child, consider connecting with organizations like the Bateman Horne Center, #MEAction, and the Open Medicine Foundation, and following RECOVER Initiative research. Your advocacy and your child’s story matter in pushing for the research and recognition our children deserve. 

I invite you to explore the Clinical Care Guide and our other invaluable resources on our website.   
 
Your support can help change the future for children with ME/CFS and Long COVID. 

If you’re a parent dealing with post-infectious illness in your child, consider connecting with organizations like the Bateman Horne Center, #MEAction, SOLVE ME and the Open Medicine Foundation, and following RECOVER Initiative research. Your advocacy and your child’s story matter in pushing for the research and recognition our children deserve. 

I invite you to explore the Clinical Care Guide and our other invaluable resources on our website.   
 
Your support can help change the future for children with ME/CFS and Long COVID.