Evidenced-Based Pediatric ME/CFS with Dr. Peter Rowe: An Interview with MEAction Maryland
Tell us what your series offers.
Overall, the series offers a comprehensive, up-to-date video guide to pediatric ME/CFS. It features a suite of six medical education webinars presenting the evidence-based research of Dr. Peter Rowe, Director of the Children’s Chronic Fatigue Clinic at Johns Hopkins Hospital and a leader in ME/CFS for over 30 years. Each webinar contains a full slide presentation by Dr. Rowe, followed and enhanced by a panel discussion of adults with lived experience of pediatric ME/CFS. While the series focuses on child onset — the population Maryland Chair Bridget Collins calls the “forgotten demographic” — many of its lessons apply to people at various ages and stages of ME/CFS.
How did the project get started?
#MEAction Maryland has prioritized medical education since 2022, when the chapter was invited to speak on complex chronic illness to neurology students at Johns Hopkins. Since then, Bridget, who developed child onset ME/CFS, would often observe that research and advocacy focus mainly on illness in adults. Denise Lopez-Majano, caregiver to two sons with ME/CFS, shared Bridget’s interest in reaching physicians who treat children.
When #MEAction announced the #TeachMETreatME campaign, encouraging members to partner with regional universities, the chapter saw the opportunity both to fill the gap in childhood medical education and to enlist the foremost expert in pediatric ME/CFS: Dr. Peter Rowe. Aware of his nearing retirement, we hoped he would be interested in sharing and preserving his collected knowledge of ME/CFS over Zoom. We offered to produce and publish the recordings on YouTube. He enthusiastically agreed; he answered our email at once. From the outset, we were united in the goal to educate medical providers with his research findings and observations from clinical practice.
How did you decide to organize the webinars?
It was Dr. Rowe’s decision to organize the series by opening with a general introduction to pediatric ME/CFS before presenting on more specific pathologies that, if treated, could lead to patient improvement. In addition to covering commonly known co-morbidities such as orthostatic intolerance and hypermobility, Dr. Rowe describes neuroanatomical and biomechanical conditions that worsen ME/CFS symptoms and the targeted therapies that can ease them. Dr. Rowe playfully characterizes his clinical approach as “peeling the artichoke,” moving from general to specific considerations “to get to the heart of the matter,” and the series simulates his process. Our contribution was to supplement Dr. Rowe’s presentations with a panel discussion of adults who had developed ME/CFS as children. Sixteen people generously shared their experiences, helping providers to recognize the conditions Dr. Rowe describes when they present in their practices as well as grasp the impact of ME/CFS on young people’s quality of life.
The series concludes with a capstone interview in which Dr. Rowe reflects on the past, present, and future of ME/CFS research.
How did ME/CFS impact the project? What challenges did you face?
We posted the first webinar in May 2024 for Millions Missing and naively projected that we would complete the series in six months; instead it took two years. We learned like everyone does that ME/CFS runs on its own timetable. In some episodes, the strain is evident on our faces.
We also challenged ourselves to produce the most compelling and accessible product possible. We sought a diverse range of patients for our lived experience panels, and locating adults with capacity to talk about their childhood illness took time. The process of turning rough recordings into a polished video presentation challenged the executive functioning of our video editor, Gwynn Dujardin. Also, to maximize accessibility, we published episode transcripts, lists of sources, and Dr. Rowe’s PowerPoint slides. Managing a production team of people with ME/CFS required respecting everyone’s fluctuations in capacity to get tasks done sustainably over time.
What surprised or impressed you in the series?
For caregiver Denise, it was surprising to learn over the course of the series just how many of the conditions Dr. Rowe describes are factors in her sons’ illnesses. The episodes show how even minor movements like raising an arm can produce conditions of neural strain that disrupt the autonomic system and worsen ME/CFS symptoms. Dr. Rowe offers hope that children and adults with ME/CFS can experience improvement with the therapy models he provides. We were moved by his compassion for patients and the wisdom of our lived experience panels. Finally, we were surprised by our own ability to see the project through.
What would you say to medical providers interested in the series?
As Dr. Rowe says in our final capstone episode, if you understand ME/CFS, you’ll have a solid foundation for all of medicine. The webinar series presents detailed, evidence-based research by the leading expert in pediatric ME/CFS and demystifies the intersection between ME/CFS and common and lesser-known pathologies. Dr. Rowe draws on thirty years of clinical experience to recommend treatments that show promise for an underserved population. The panel discussions offer real-world examples of what children with ME/CFS suffer in their daily lives, offering clues to what providers should listen for with their patients. Dr. Rowe thinks so highly of the series that he chose to feature it on his clinic’s website and distributes it to colleagues for reference.
For a small investment of time, providers stand to gain a wealth of practical insight into the phenomenon of pediatric ME/CFS.
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