Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness (2015) / Chapter Skim
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. Over a period of decades, clinicians and researchers developed separate case definitions and diagnostic criteria for ME and CFS, although the terms denote conditions with similar symptoms.
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, the Food and Drug Administration, the Agency for Healthcare Research and Quality, and the Social Security Administration. The study was commissioned in response to a recommendation from HHS's Chronic Fatigue Syndrome Advisory Committee (CFSAC)
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The HHS sponsors charged the committee with evaluating the current criteria for diagnosis of ME/CFS and recommending clinical diagnostic criteria that would address the needs of health care providers, patients, and their caregivers. Specifically, the committee was asked to • conduct a study to identify the evidence for various clinical diag nostic criteria for ME/CFS using a process with input from stake holders, including practicing clinicians and patients; • develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology; • recommend whether new terminology for ME/CFS should be ad opted; and • develop an outreach strategy for disseminating the new criteria nationwide to health professionals.
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The complete statement of task is provided in Chapter 1. THE COMMITTEE'S APPROACH The Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome comprised 15 members with expertise in clinical care for ME/CFS, pediatrics, infectious disease, epidemiology, immunology, rheumatology, behavioral health, pain, sleep, primary care, genetics, exercise physiology, neurology/neuropathology, clinical case definitions, and consensus processes.
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Final recommendations regarding diagnostic criteria were made by consensus after deliberation by the committee as a whole. OVERVIEW OF THE REPORT Chapters 1 through 3 of this report summarize the history and background of ME/CFS and compare various existing definitions and terminology for the disorder proposed to date.
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Patient reports and symptom surveys as well as scientific evidence consistently showed that impaired function, post-exertional malaise (an exacerbation of some or all of an individual's ME/CFS symptoms after physical or cognitive exertion, or orthostatic stress that leads to a reduction in functional ability) , and unrefreshing sleep are characteristic symptoms almost universally present
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SUMMARY 7 Patient presents with profound fatigue Substantial No • Symptom management decrease in • Consider another diagnosis function Yes No • Symptom management Persists > • Reassess for 6 months 6 months • Consider another diagnosis Yes Post exertional No malaise and • Consider another diagnosis unrefreshing sleep Yes Cognitive impairment No and/or • Consider another diagnosis orthostatic intolerance Yes Patient diagnosed with ME/CFS FIGURE S-1 Diagnostic algorithm for ME/CFS.
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. Recommendation 2: The Department of Health and Human Services should develop a toolkit appropriate for screening and diagnosing patients with myalgic encephalomyelitis/chronic fatigue syndrome in a wide array of clinical settings that commonly encounter these patients, including primary care practices, emergency departments, mental/behavioral health clinics, physical/occupational therapy units,
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The development of clinical questionnaire or history tools that are valid across populations of patients and readily usable in the clinical environment should be an urgent priority. The DePaul Symptom Questionnaire, which has been used extensively in research (DePaul Research Team, 2010)
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Despite misconceptions about ME/CFS and other barriers to its accurate diagnosis among health care professionals, it is important that the dissemination of the new diagnostic criteria proposed in this report build on previous efforts that have helped increase awareness of ME/CFS among health professionals and the public. Key to this effort will be the continued positioning of ME/CFS as a legitimate disease that occurs in both children and adults and should be properly diagnosed and treated.
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In conclusion, the committee hopes that the diagnostic criteria set forth in this report, based on a comprehensive review of the literature, will 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. REFERENCES An Open Letter.
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2005. Myalgic encephalomyelitis/chronic fatigue syndrome: A clinical case definition and guidelines for medical practitioners: An overview of the Canadian consensus document.
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1998. Factor analysis of un explained severe fatigue and interrelated symptoms: Overlap with criteria for chronic fatigue syndrome.
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