Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness (2015) / Chapter Skim
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1 Introduction
1 Introduction
Pages 15-26
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. Seeking and receiving a diagnosis can be a frustrating process for patients with ME/CFS for several reasons, including a lack of understanding of diagnosis and treatment of the condition among health care providers and skepticism about whether it is in fact a true medical condition.
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CHARGE TO THE COMMITTEE The Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was charged by the Department of Health and Human Services (HHS) sponsors 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.
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Of the 11 members, 7 are required to be scientists with demonstrated expertise in ME/CFS biomedical research, and 4 should have expertise in health care delivery, private health care services or insurers, or voluntary organizations
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Specifically the IOM will: • onduct a study to identify the evidence for various diagnostic clinical C criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients; • evelop evidence-based clinical diagnostic criteria for ME/CFS for use by D clinicians, using a consensus-building methodology; • ecommend whether new terminology for ME/CFS should be adopted; R and • evelop an outreach strategy to disseminate the definition nationwide to D health professionals. Over the 18 months, the committee will consider four topic areas and pro duce a consensus report with recommendations.
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Some quotes throughout the report highlight perspectives shared during the public sessions and in emails to the committee. In addition to its meetings and public sessions, the committee sought information from relevant concurrent research efforts and undertook a comprehensive review of the scientific literature and other available evidence on ME/CFS.
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Literature Review Throughout the study, the IOM staff maintained an EndNote library to organize the committee's research. The foundation for this library was a broad search of eight databases for all articles related to ME, CFS, ME/CFS, and other terms used to describe this disorder (such as post-viral fatigue syndrome)
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The committee was charged with reviewing the evidence for various diagnostic clinical criteria for ME/CFS. Existing diagnostic criteria refer to a minimum of nine distinct symptoms, so the evidence for clinical criteria spans a wide range of disciplines.
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• Symptoms or symptom categories − Autonomic manifestations − Fatigue − Immune manifestations − Neurocognitive manifestations − Neuroendocrine manifestations − Pain − (post-exertional malaise) PEM − Sleep • Additional topics − Disability and impairment − Infections and ME/CFS − Symptom constructs and clusters For the topics identified for targeted searches, the committee and the IOM staff worked together to identify priority research questions and to develop targeted search strategies for gathering literature relevant to answerng these questions.
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TABLE 1-2 Targeted Search Results: Pediatrics Topic Search Results Fulfilled Criteria Deemed Relevant Autonomic manifestations 172 27 22 Neurocognitive manifestations 144 13 12 Post-exertional malaise (PEM) 43 8 7 Sleep 68 10 8 NOTES: Search results = number of references returned from the targeted search after removing duplicates.
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Consultants To fulfill its statement of task with respect to developing an outreach strategy for disseminating the diagnostic criteria for ME/CFS, the committee consulted with a communication specialist with expertise in dissemination for health care professionals. The committee worked with the consultant to explain the needs and priorities for and the audiences to be reached with this strategy.
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U.S. healthcare providers' knowledge, attitudes, beliefs, and perceptions concerning chronic fatigue syndrome.
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Health Care for Women International 27(7)
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