How Specialist Silos Leave ME/CFS Patients Behind

The U.S. healthcare system is not designed to manage multi-system disease, a core problem for people with ME/CFS and other complex chronic illnesses.

The limitation is not only what individual specialties know, but how disconnected that knowledge is. Modern specialties were built around organ systems (cardiology, neurology, pulmonology, endocrinology, gastroenterology, rheumatology), organizing disease by body part rather than cross-system dysfunction.

ME/CFS does not fit into a single domain. It spans neurology (cognitive dysfunction, small fiber neuropathy in subsets), cardiology (orthostatic intolerance, circulatory impairment), immunology (immune and mast cell dysregulation), endocrinology (metabolic and hormonal disruption), gastroenterology (motility and gut symptoms), and autonomic systems. Each specialty may recognize part of the illness, but none is responsible for integrating it as a whole.

Rheumatology is often seen as a potential fit due to systemic disease expertise, but in practice it is limited to defined autoimmune and inflammatory diagnoses and does not function as a home for multi-system illness outside those categories.

This creates a structural gap: patients are routed between silos that each see fragments of disease, while no part of the system is accountable for integration. Primary care is left to coordinate across these silos without the tools or structure to do so. This is not just an individual coordination problem, it reflects how care is organized.

ME/CFS now has clinical guidance that translates current knowledge into practice, including the Bateman Horne Center Clinical Care Guide:

https://batemanhornecenter.org/clinical-care-guide/

The issue is not lack of usable guidance, but lack of an integrated system for applying it across specialties. Long COVID has brought new attention to this structural failure, but it has affected ME/CFS patients for decades.

Until healthcare is designed to integrate multi-system disease rather than partition it into silos, patients will continue to fall through those gaps.