Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness (2015) / Chapter Skim
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7 Recommendations
7 Recommendations
Pages 209-230
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From page 209... ...
.1 Several signs and symptoms -- PEM; orthostatic intolerance; and cognitive impairment, specifically slow information processing -- have distinctive findings in ME/CFS patients. Conclusion: It is clear from the evidence compiled by the commit tee that ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of af fected patients.
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, will not fulfill all of the criteria proposed here, but it emphasizes that all patients should receive appropriate care. The committee weighed several factors in reaching consensus on these diagnostic criteria: (1)
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and to have difficulty with orthostatic intolerance and autonomic dysfunction. Profound fatigue, unrefreshing sleep, PEM, and cognitive impairment under stress are common in pediatric patients.
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212 BEYOND ME/CFS 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 7-1 Diagnostic algorithm for ME/CFS.
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The information provided in this table can be used to operationalize the committee's proposed diagnostic criteria in the steps described below. Table 7-2 provides similar information for other symptoms/manifestations of ME/CFS that can support diagnosis.
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Fatigue • "flu-like fatigue/ • How fatigued are you? History of this symptom can exhaustion" • What helps your fatigue consistently be elicited using • "wired but tired -- I feel the most (resting, lying research questionnaires but exhausted but I can't down, quiet situations, without specificity.
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or impaired function in adults and children, see What are you able to do Appendix D
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Post-exertional • "crash," "relapse," • What happens to you History of this symptom can Two cardiopulmonary malaise "collapse" after you engage in consistently be elicited using exercise tests (CPETs) (prolonged • mentally tired after the normal physical or research questionnaires in separated by 24 hours exacerbation slightest effort mental exertion?
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Cognitive • "brain fog" • Do you have problems • Wood Mental Fatigue Formal neuropsychology impairments • "confusion" doing the following Inventory testing is not required for (problems • "disorientation" activities: driving, diagnosis, although it may with thinking • "hard to concentrate, watching a movie, While research be needed for other reasons, exacerbated by can't focus" reading a book/ questionnaires frequently such as obtaining Social exertion, effort, • "inability to process magazine, completing elicit cognitive impairments Security Disability. or stress or time information" complex tasks under (see Appendix D)
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Orthostatic • lightheadedness • How do you feel when This is an area that is not Standing test or tilt test intolerance • dizziness you have been standing currently explored in depth to evaluate for postural (Symptoms • spatial disorientation still for more than 1-2 in research questionnaires, tachycardia syndrome, worsen upon • fainting minutes? but some suggestions are neurally mediated assuming and • feeling unwell, dizzy, or • What happens to you included in Appendix D
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NOTES: The patient descriptions included in this table were obtained from the Food and Drug Administration's Voice of the Patient report (FDA, 2013) , the public comments submitted for the study, and the ME/CFS experts on the committee.
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What makes it worse? History of Patients report coming • How did your illness Laboratory evidence of prior prior triggering down with a viral- begin?
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NOTES: The patient descriptions included in this table were obtained from the Food and Drug Administration's Voice of the Patient report (FDA, 2013) , the public comments submitted for the study, and the ME/CFS experts on the committee.
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Recommendation 1: Physicians should diagnose myalgic encephalomy elitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Revision (ICD-10)
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It would also be helpful to develop a brief set of neuropsychology tests targeting the information processing problems that affect patients with ME/CFS. This is a particular need as current neuropsychology tests require many hours to complete, frequently precipitating symptoms that patients may find intolerable, and often are impractical for patients because they are quite expensive and not covered by many insurance plans (Lange, 2010)
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The committee decided against developing a comprehensive list of potential comorbid conditions, but it points to conditions that clinicians may wish to consider that have been identified by the International Consensus Criteria for ME (ME-ICC) and CCC, including fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, irritable bladder syndrome, Raynaud's phenomenon, prolapsed mitral valve, depression, migraine, allergies, multiple chemical sensitivities, Sicca syndrome, obstructive or central sleep apnea, and reactive depression or anxiety.
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DISSEMINATING THE DIAGNOSTIC CRITERIA The criteria proposed here will not improve the diagnosis and care of patients unless health care providers use them. Accordingly, the committee developed an outreach strategy for disseminating the clinical diagnostic criteria resulting from this study nationwide to health care professionals so patients will receive this diagnosis in an accurate and timely manner (see Chapter 8)
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report Clinical Practice Guidelines We Can Trust, which were developed for clinical practice guidelines but are also pertinent to the development of trustworthy diagnostic criteria (IOM, 2011)
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, the committee considered the variety of case definitions and diagnostic criteria that have been proposed for ME/CFS as well as the public comments submitted for this study (see Box 3-2 in Chapter 3)
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Current evidence does provide a path forward now, which is outlined in this report, but it is the committee's hope that new developments in research, particularly in the creation of clinical diagnostic tools, will warrant revisiting these guidelines in the near future. To that end, the committee has proposed a process that should be used in updating its proposed diagnostic criteria.
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1996. Depression in fatiguing illness: Compar ing patients with chronic fatigue syndrome, multiple sclerosis and depression.
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2005. Psy chometric properties of the CDC symptom inventory for assessment of chronic fatigue syndrome.
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