Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological — rather than psychological — nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness — systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical — not a psychiatric or psychological — illness. This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report's most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.

Contents

• THE NATIONAL ACADEMIES
• COMMITTEE ON THE DIAGNOSTIC CRITERIA FOR MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME
• Reviewers
• Preface
• Acronyms and Abbreviations
• Summary
  • CONTEXT FOR THIS STUDY
  • CHARGE TO THE COMMITTEE
  • THE COMMITTEE'S APPROACH
  • OVERVIEW OF THE REPORT
  • RECOMMENDATIONS
  • REFERENCES
• 1. Introduction
  • CHARGE TO THE COMMITTEE
  • CONTEXT FOR THIS STUDY
  • THE COMMITTEE'S APPROACH
  • OVERVIEW OF THE REPORT
  • REFERENCES
• 2. Background
  • HISTORY OF ME/CFS
  • TERMINOLOGY
  • BURDEN OF ME/CFS
  • REFERENCES
• 3. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters
  • CASE DEFINITIONS AND DIAGNOSTIC CRITERIA
  • TERMINOLOGY
  • SYMPTOM CONSTRUCTS AND CLUSTERS
  • REFERENCES
• 4. Review of the Evidence on Major ME/CFS Symptoms and Manifestations
  • LIMITATIONS OF THE RESEARCH BASE
  • FATIGUE AND ITS IMPACT ON FUNCTION
  • POST-EXERTIONAL MALAISE (PEM)
  • SLEEP-RELATED SYMPTOMS
  • NEUROCOGNITIVE MANIFESTATIONS
  • ORTHOSTATIC INTOLERANCE AND AUTONOMIC DYSFUNCTION
  • REFERENCES
• 5. Review of the Evidence on Other ME/CFS Symptoms and Manifestations
  • PAIN
  • IMMUNE IMPAIRMENT
  • NEUROENDOCRINE MANIFESTATIONS
  • INFECTION
  • REFERENCES
• 6. Pediatric ME/CFS
  • POST-EXERTIONAL MALAISE
  • ORTHOSTATIC INTOLERANCE AND AUTONOMIC DYSFUNCTION
  • NEUROCOGNITIVE MANIFESTATIONS
  • SLEEP-RELATED SYMPTOMS
  • INFECTION
  • IMMUNE IMPAIRMENT
  • NEUROENDOCRINE MANIFESTATIONS
  • OTHER SYMPTOMS
  • SYMPTOM CONSTRUCTS
  • SUMMARY
  • REFERENCES
• 7. Recommendations
  • MAKING THE DIAGNOSIS
  • DISSEMINATING THE DIAGNOSTIC CRITERIA
  • UPDATING THE DIAGNOSTIC CRITERIA
  • NAMING THE DISORDER
  • CLOSING THOUGHTS
  • REFERENCES
• 8. Dissemination Strategy
  • OBJECTIVE
  • CONTEXT
  • STRATEGIC CHOICES
  • DISSEMINATION ACTIVITIES
  • EVALUATION
  • REFERENCES
• APPENDIXES
  • A Public Session Agendas
  • B GRADE Grid Template
  • C Disability in ME/CFS
  • D Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms
  • E Biographical Sketches of Committee Members, Consultants, and Staff

This study was supported by Contract No. HHSN263201200074I between the National Academy of Sciences and the National Institutes of Health. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project.

Suggested citation:

IOM (Institute of Medicine). 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.