A Rose by Any Other Name

Purpose: This document critiques the decision by one ME charity to propose changing the name of Myalgic Encephalomyelitis (ME) to Myalgic Encephalopathy in 2001. It evaluates the historical, scientific, and practical implications of altering the terminology associated with this illness.

Key Points:

1. Proposed Name Change
   • The shift from “Myalgic Encephalomyelitis” (muscle pain with inflammation of the brain and spinal cord) to “Myalgic Encephalopathy” (muscle pain with damage to the brain and spinal cord of unknown origin) is critiqued as clumsy and unfitting.
   • The proposed change retains the acronym “ME” but risks adding further confusion to an already misunderstood illness without addressing its scientific and clinical complexities.
2. Historical Context
   • The term “Myalgic Encephalomyelitis” introduced by Dr. Ramsay in 1956 has stood the test of time, being widely used across the UK, Europe, Canada, and Australasia for more than half a century.
   • Earlier succinct definitions of ME included detailed clinical observations and a checklist of symptoms, providing practical guidance for diagnosis.
3. Fatigue State Definitions in the USA
   • Fatigue definitions emerged following the 1984 Lake Tahoe epidemic, inaccurately attributed to a herpesvirus infection.
   • Definitions like those by Holmes (1988) and Fukuda (1994) overemphasized symptoms like tonsillitis and fatigue while overlooking the neurological features of ME.
   • These definitions inflated the likelihood of psychiatric diagnoses, hindering research comparability and treatment evaluation.
4. Scientific Advancements
   • Modern tools, such as PCR (polymerase chain reaction), brain imaging (CT, MRI, SPECT, PET scans), and rapid diagnostic tests, reveal the role of viruses in causing ME.
   • Studies indicate viral inflammatory damage in the brainstem and spinal cord leads to symptoms like central fatigue, autonomic dysfunction, and hormonal imbalance.
5. Conclusion
   • Changing the name to “Myalgic Encephalopathy” is unnecessary and detracts from using modern diagnostic and management technologies to address ME effectively.
   • Instead, efforts should focus on accurate diagnosis, prevention, and management based on evolving scientific insights.

Target Audience:

• Healthcare Professionals: Clinicians and researchers exploring ME’s historical and modern terminology.
• Advocates and Patients: Stakeholders questioning name changes and emphasizing biomedical research.
• Policymakers and Organizations: Decision-makers responsible for ensuring clarity in disease definitions and supporting advancements in research.

Overall Outcome: This document argues against altering the established terminology for ME and advocates for leveraging modern tools to improve understanding and treatment of the condition.