The Definition & History of Myalgic Encephalomyelitis (M.E.) – The Nightingale Definition of M.E.

Purpose: This document, authored by Dr. Byron Hyde for the Amsterdam M.E. Conference in September 2015, provides a comprehensive overview of Myalgic Encephalomyelitis (M.E.). It details the condition’s definition, historical context, clinical characteristics, and the scientific understanding of its potential causes. The aim is to raise awareness about M.E. and advocate for increased research and improved care for affected individuals.

Key Points:

1. Definition of Myalgic Encephalomyelitis (M.E.)
   • Defines Primary M.E. as a chronic, post-infectious, autoimmune disease akin to poliomyelitis but distinguished by injury to the cerebral cortex and deregulation of central nervous system functions.
   • Highlights Secondary M.E., often triggered by exposure to neurotoxins, presenting with similar CNS injuries but without evidence of enteroviral infection.
2. Scientific Findings and Diagnosis
   • Diagnosis relies on measurable scientific evidence, including chronic encephalopathy (often affecting the limbic system and cerebral cortex) identified via Brain SPECT imaging and evidence of enteroviral infection.
   • Discusses the “chronic viral nest” in the gut and its implications for ongoing systemic impacts.
3. Historical Perspective: M.E. as “The Fourth Polio”
   • Reviews M.E.’s alignment with historical polio epidemics, suggesting that both conditions may share enteroviral roots.
   • Describes several notable epidemics, including the 1934 Los Angeles outbreak, 1947-1949 Akureyri epidemic, and the 1955-1956 Royal Free Hospital epidemic, where M.E. co-occurred with polio-like illnesses.
4. Enteroviral Causes and Autoimmune Hypotheses
   • Investigates the role of enteroviruses in causing M.E., detailing their potential to trigger both infectious and autoimmune injuries.
   • Explores how immunizations, environmental exposures, and genetic predispositions might influence susceptibility to M.E.
5. Significance of CNS Injury in M.E.
   • Examines CNS deregulation symptoms across cognitive, physical, autonomic, and emotional domains.
   • Advocates for greater understanding of the vascular and cortical impacts of M.E., emphasizing the need for better diagnostic imaging.
6. Historical Challenges and Advocacy
   • Discusses challenges in the recognition and classification of M.E., including its conflation with chronic fatigue syndrome (CFS).
   • Critiques systemic mismanagement by medical institutions, urging advocacy for improved research, diagnostic criteria, and therapeutic approaches.

Target Audience:

• Healthcare Professionals: Doctors, neurologists, and researchers seeking insights into the definition, diagnosis, and management of M.E.
• Advocates and Policymakers: Stakeholders aiming to promote awareness and drive systemic improvements in M.E. care.
• Patients and Carers: Individuals interested in the history, scientific understanding, and clinical nuances of M.E.

Overall Outcome: The document provides a thorough historical and clinical exploration of Myalgic Encephalomyelitis. By framing M.E. as a complex, enteroviral-related disease with profound CNS impacts, it challenges outdated notions and calls for a unified, evidence-based approach to research, diagnosis, and patient care.