Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness (2015) / Chapter Skim
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3 Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters
3 Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters
Pages 37-70
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From page 37... ...
Nancy Lee spoke on behalf of the study sponsors, acknowledging "the considerable need for faster and more accurate diagnoses for patients" and expressing her hope that this committee would "provide guidance to the broader medical community on how to identify and diagnose ME/CFS in the clinical setting."1 To set the stage for the chapters of this report that offer this guidance, this chapter provides some background information on case definitions and diagnostic criteria for ME/CFS, a brief review of some of the existing case definitions and diagnostic criteria, a discussion of the terminology used to refer to this illness, and a review of the literature on symptom constructs and clusters. 1 A video of Dr.
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. There are many examples of diagnostic criteria for illnesses without a clearly observable pathology, such as the Jones criteria for acute rheumatic fever.
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. Further, diagnostic criteria developed by consensus of a group are likely to reflect the biases of the individuals within that group (Morris and Maes, 2013; van der Meer and Lloyd, 2012)
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40 BEYOND ME/CFS TABLE 3-1 Elements of Selected Case Definitions and Diagnostic Criteria for ME/CFS Canadian Consensus Criteria for ME/CFS Fukuda Case Definition for CFS (1994)
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The caregivers, and Canadian Consensus Criteria technical staff who were used as a starting point, reviewed the evidence but significant changes were and drafted the made. recommendations.
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persists or relapses for ≥ 6 months. • Post-exertional • Four or more of the following malaise and/or concurrently present for ≥ 6 months: fatigue – impaired memory or concentration • Sleep dysfunction – sore throat • Pain – tender cervical or axillary lymph • Two or more nodes neurological/ – muscle pain cognitive – multi-joint pain manifestations – new headaches • At least one – unrefreshing sleep symptom from two – post-exertion malaise of the following categories: – autonomic – neuroendocrine – immune • Illness lasting ≥ 6 months
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that neurological impairment – difficulty with is often widespread and categories: sleeping migratory in nature – neurocognitive – muscle and/or • Two or more neurological/ impairments joint pain cognitive manifestations – pain – headaches • At least one symptom from – sleep disturbance – painful lymph two of the three categories: – neurosensory, nodes without – autonomic manifestations perceptual, and motor pathological – neuroendocrine disturbances enlargement manifestations • Immune, gastrointestinal, – sore throat – immune manifestations and genitourinary – cognitive • Persistent or recurring impairments. At least dysfunction symptoms for ≥ 6 months but one symptom from three – physical not lifelong of the following five or mental categories: exertion makes – flu-like symptoms symptoms – susceptibility to worse viral infections with – general prolonged recovery malaise or flu- periods like symptoms – gastrointestinal tract – dizziness and/ – genitourinary or nausea – sensitivities to food, – palpitations medications, odors, or in the absence chemicals of identified • At least one symptom cardiac from energy production/ pathology transportation • Persistence of impairments: symptoms ≥ 4 − cardiovascular months for adults − respiratory and ≥ 3 months in − oss of thermostatic l children or young stability people − ntolerance of extremes i of temperature continued
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(2003) Exclusionary • Any active medical condition that may Active disease processes Conditions explain the presence of chronic fatigue, that explain most of such as the major symptoms, – untreated hypothyroidism, sleep including apnea, and narcolepsy • Addison's disease – iatrogenic conditions, such as side • Cushing's syndrome effects of medication.
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Criteria for ME (2011) No list provided Any active medical condition As in all diagnoses, exclusion that may explain the presence of of alternate explanatory chronic fatigue, such as diagnoses is achieved by the • untreated hypothyroidism patient's history, physical • sleep apnea examination, and laboratory/ • narcolepsy biomarker testing as • malignancies indicated.
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, irritable bowel diagnostic laboratory tests, including syndrome (IBS) , – fibromyalgia interstitial cystitis, – anxiety disorders irritable bladder – somatoform disorders syndrome, Raynaud's – nonpsychotic or nonmelancholic phenomenon, prolapsed depression mitral valve, depression, – neurasthenia migraine, allergies, – multiple chemical sensitivity multiple chemical disorder.
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primarily by symptoms that Fibromyalgia overlaps. cannot be confirmed by diagnostic laboratory tests, such as – multiple food and/or chemical sensitivity – fibromyalgia • Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented.
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For instance, two patients could have very little symptom overlap yet both be diagnosed with CFS. The Fukuda definition indicates that patients who fail to meet its criteria for fatigue severity and at least four minor symptoms should be diagnosed with idiopathic chronic fatigue.
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. Although the NICE criteria require fewer total symptoms relative to other diagnostic criteria for ME/CFS, the guidelines note that PEM or post-exertional fatigue, cognitive difficulties, sleep disturbance, and chronic pain are key features of the illness and that a diagnosis of ME/CFS should be reconsidered if none of these symptoms are present.
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Comparison of Existing Diagnostic Criteria The diagnostic criteria described above have similarities and differences. The Revised CCC and the ME-ICC share the most similarities with the CCC, but that is to be expected given that both used the CCC as a starting point.
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Required and Additional Symptoms The existing diagnostic criteria focus on similar sets of symptoms, but they differ markedly in the number of symptoms required and how those symptoms are defined. The Fukuda definition and the NICE guidelines are perhaps the most straightforward.
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. Patients fulfilling the Revised CCC have more severe functional impairment and physical and cognitive symptoms relative to those fulfilling the Fukuda definition.
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Validation of Diagnostic Criteria for ME/CFS In a recent systematic review, Brurberg and colleagues (2014) identified 38 studies on comparison and evaluation of the existing diagnostic criteria for ME/CFS, which they considered "validation" studies.
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. The concerns and limitations described above for the case definitions and diagnostic criteria for adults apply also to criteria used to diagnose children and adolescents.
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further subdivided these criteria into severe and moderate. As with the diagnostic criteria for adults, the pediatric definition includes a list of medical and psychiatric conditions that may also cause chronic fatigue and should be considered exclusionary.
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note that a comprehensive evaluation should be able to distinguish between the two conditions. The use of different diagnostic criteria and case definitions has posed the same challenges for research into pediatric ME/CFS as it has for research with adults.
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CURRENT CASE DEFINITIONS AND DIAGNOSTIC CRITERIA 57 BOX 3-1 ME/CFS Research Subgroups Clinical Stratification Variables • Fulfillment of different case definitions or diagnostic criteria • Illness onset: sudden or gradual • Type, severity, or duration of symptoms • Level of functional performance • Gender • Age • Duration of illness • Comorbid conditions − ME/CFS + fibromyalgia − ME/CFS + postural orthostatic tachycardia syndrome − ME/CFS + depression − ME/CFS + anxiety • Pre-illness history and triggers Biological Stratification Variables • Exercise response • Immunologic • Infectious • Endocrine • Neurological • Metabolic • Genomic SOURCES: Abbi and Natelson, 2013; Arroll and Senior, 2009; Aschbacher et al., 2012; Brenu et al., 2013; Brown et al., 2010, 2013a; Corradi et al., 2006; Fukuda et al., 1994; Janal et al., 2006; Jason et al., 2000, 2012b; Njoku et al., 2009; Reynolds et al., 2013; Twisk, 2014. researchers have not examined subgroups of patients according to these guidelines.
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• Activity-induced neuroimmune morbidity • Autonomic nervous system dysfunction • Autonomic nervous system immune mitochondrial dysfunction • Body breakdown syndrome • Brain dysfunction induced ME/CFS • Brain stem infection • Catastrophic multisystem dysfunction • Chronic fatigue • Chronic fatigue syndrome • Chronic immune abnormality • Chronic immune deficiency • Chronic influenza syndrome • Chronic myalgic encephalopathy syndrome • Complex energy collapse syndrome • Complex energy drain syndrome • Cytokinitis • Diffuse encephalomyelitic immune inflammatory syndrome • Encephalomyelitic cytokine inflammatory cascade • Encephalomyelitic cytokine syndrome • Encephalomyelitic immune inflammatory cascade • Encephalomyelitic immune syndrome • Encephalomyelitis/chronic fatigue syndrome • Energy collapse syndrome • Epidemic neuro-myasthenia • Immune dysfunction syndrome • Immune neuroendocrine syndrome • Immunity disease • Mitochondrial dysfunction syndrome • Mitochondrial failure syndrome The committee asked members of the public to suggest a new name for the illness, and these suggestions can be found in Box 3-2. The most common suggestions were "myalgic encephalomyelitis," "myalgic encephalomyelitis/ chronic fatigue syndrome" (ME/CFS)
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• Neural-endocrine exhaustive dysfunction • Neurasthenia gravis • Neuroendocrine immune collapse syndrome • Neuroendocrine immune disease • Neuroendocrine immune dysfunction • Neuroendocrine immune dysfunction syndrome • Neuroimmune disease • Neuroimmune disorder • Neuroimmune-endocrine muscular disease • Neuroimmune inflammatory disease • Neuroimmune microbe imbalance • Neuroimmune spectrum disorder • Neuro-myasthenia • Nightingale's disease • Peterson syndrome • Peterson's disease • Post-activity neuroimmune morbidity • Post-polio syndrome (PPS) • Ramsey's syndrome • Severe systematic collapse • Sophia Mirza disease • Vagal gliosis • Vagal neuropathy • Anything but CFS clude "benign myalgic encephalomyelitis," "post-viral fatigue syndrome," and "epidemic neuromyasthenia." As discussed in Chapter 2, many patients and researchers are critical of the term "chronic fatigue syndrome," which is the name most commonly ascribed to this disease in the United States (but not in other parts of the world)
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In considering which name would be most appropriate, the committee turned first to ME -- "myalgic encephalomyelitis" or "encephalopathy." Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME. This term also fails to convey the full spectrum of this disorder.
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Small studies with few individuals sharing particular constellations of symptoms sometimes limited the ability to tease out distinct clusters or subgroups of ME/CFS patients. Evidence Key Symptom Constructs Identified by Factor Analyses Several investigators used factor analysis to explore the relations or components of symptom constructs or to reduce large sets of symptom data to a few structural components.
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differentiated individuals with ME/CFS from healthy individuals or individuals with fatigue due to conditions other than ME/CFS. One study involving 236 participants who had been diagnosed by physicians using either the Fukuda definition or the CCC and 86 healthy controls examined the frequency and severity of 54 symptoms reported on the DePaul Symptom Questionnaire (Jason et al., 2013b)
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Four factors -- "lack of energy," "physical exertion," "cognitive functioning," and "fatigue and rest" -- most accurately defined fatigue-related symptomatology in individuals with severe fatigue lasting 6 months or longer. The group with ME/CFS meeting the Fukuda definition consistently had more severe symptomatology for all four dimensions of fatigue compared with those in the idiopathic fatigue group.
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Symptom Constructs and Clusters That Identify Subgroups A small study involving 114 participants meeting the Fukuda definition for ME/CFS who were recruited to participate in a trial used cluster analysis to identify three subgroups of patients: symptomatic and highly overextended individuals (n = 20) , less symptomatic and moderately overextended individuals (n = 34)
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Two studies explored gender differences in the expression of symptoms. One of these studies examined 121 patients meeting the Fukuda definition and found no gender differences in severity of fatigue or functional status; however, women were more likely than men to have flu-like symptoms and less likely to have comorbid depression (Tseng and Natelson, 2004)
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2013. Immune abnormalities in patients meeting new diagnostic criteria for chronic fatigue syndrome/myalgic encephalomyelitis.
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2003. Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case defini tion, diagnostic and treatment protocols (Canadian case definition)
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Hadzi-Pavlovic, A Lloyd, and International Chronic Fatigue Syndrome Study Group.
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2013. Case definitions and diagnostic criteria for myalgic encepha lomyelitis and chronic fatigue syndrome: From clinical-consensus to evidence-based case definitions.
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2014. Social Security Ruling, SSR 14-1p; Titles II and XVI: Evaluating claims involving chronic fatigue syndrome (CFS)
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