Fink and\u00a0Schr\u00f6der challenge the validity of the IoM’s new name and definition of ME\/CFS:<\/p>\n
Redefining Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome<\/a><\/p>\n To the Editor: The Institute of Medicine (IOM) proposed a new name (systemic exertion intolerance disease) and diagnostic criteria for myalgic\u00a0encephalomyelitis\/chronic fatigue syndrome (ME\/CFS).’ The IOM We agree that more valid diagnostic criteria for ME\/CFS are needed and welcome the panel\u2019s effort to improve patient care through better diagnostic tools. However, we do not believe that a new consensus-driven proposal added to the many existing ones will help reach these important aims. The poor acceptance of ME\/CFS in the scientific community is due to a lack of convincing evidence that Even though the panel\u2019s comprehensive literature review revealed important data indicating the difficult experiences of patients with ME\/CFS, the crucial question regarding the nosological status of ME\/CFS remains unsolved2 and can be solved only through new scientific studies, not by consensus.<\/p>\n To identify a distinct syndrome, 2 prerequisites need to be proved. First, studies need to show that symptoms cluster (ie, appear together more often than randomly), which can be done using a cluster or factor analysis.1 None of the reported analyses show that the suggested symptoms cluster (postexertion malaise, unrefreshing sleep, cognitive impairment, and orthostatic intolerance).<\/p>\n Second, boundaries or points of rarity between the syndrome and related syndromes need to be identified, which can be achieved with latent class analysis or similar statistical techniques.3 This type of analysis is not reported. Because the suggested symptoms are common in numerous conditions, identifying these boundaries are of paramount importance.<\/p>\n Patients with ME\/CFS have multiple symptoms and many fulfill criteria for multiple syndromes.2 4 The new diagnostic proposal does not answer the important question of whether patients who have multisymptomatic ME\/CFS have the same illness as patients with few symptoms.<\/p>\n Is ME\/CFS a distinct syndrome or part of a spectrum? To answer that question, we need more research that complies with the basic rules on how to establish and validate diagnoses.<\/p>\n Per Fink, PhD. DMSc 1. Clayton EW. Beyond myalgic encephalomyelitis\/chronic fatigue syndrome: an IOM report on redefining an illness JAMA. 2015:313(11) 1101 1102. Ellen Wright Clayton defend the IOM’s process:<\/strong><\/p>\n In Reply<\/strong> I concur with Drs Fink and Schroder that more research is\u00a0 needed to understand the etiology and refine the diagnosis of\u00a0 systemic exertion intolerance disease. I, however, cannot agree with\u00a0 their conclusion that the IOM\u00a0 Committee\u2019s case definition fails\u00a0because it was not based on a cluster or factor analysis or latent\u00a0class analysis or by using similar sta\u00actistical techniques.<\/p>\n The Committee examined the existing literature that used these\u00a0techniques1(pp60-66) and found those studies inadequate for several\u00a0reasons. The\u00a0committee also recognized that the framing of salient\u00a0case definitions frequently relies on a variety of inputs, including\u00a0expert consensus, input from pa\u00actients and stakeholders, and\u00a0evidence-based review of the lit\u00acerature that addresses etiology,\u00a0pathophysiology, and discrimi\u00acnating clinical characteristics.<\/p>\n The Committee cited 2 examples, the Jones criteria for rheumatic fever\u00a0and the Diagnostic and Statistical Manual of Mental Disorders, in\u00a0which case definitions had been made in the absence of clear\u00a0understanding of etiology.1(p38) In its com\u00acprehensive literature\u00a0review, which assessed the quality of available evidence, the\u00a0Committee focused on identifying symptoms that are found in virtually\u00a0every patient, with an emphasis on those that have objective findings Ellen Wright Clayton. MD, JD<\/p>\n Read more about the IoM and their report<\/a>.<\/p>\n Read Dr Lucinda Bateman’s answers to questions about the report<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Fink and\u00a0Schr\u00f6der challenge the validity of the IoM’s new name and definition of ME\/CFS: Redefining Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome To the Editor: The Institute of Medicine (IOM) proposed a new name (systemic exertion intolerance disease) and diagnostic criteria for myalgic\u00a0encephalomyelitis\/chronic … Continue reading
\npanel aimed to develop evidence based clinical diagnostic criteria\u00a0 for ME\/CFS for use by clinicians, using a consensus-building\u00a0 methodology.\u201d<\/p>\n
\nME\/CFS is a distinct syndrome that can be delimited from other similar syndromes.<\/p>\n
\nAndreas Schroder, MD, PhD<\/p>\n
\n2. Wessely S. Nimnuan C. Sharpe M. Functional somatic syndromes: one or mny? Lancet. 1999:354<9182):936-939.
\n3. Kendell RF. Clinical validity. PsycholMed 1989;19{1) 45-55.
\n4. Fink P. Schroder A One single diagnosis, bodily distress syndrome,
\nsucceeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. \/Psychosom Res, 2010;68<5) 415
\n-126.<\/p>\n
\non testing in cases of ambiguity. The criteria set forth in the report reflect that analysis. As\u00a0directed by the statement of task, the criteria and the\u00a0recommendations also reflect the voices of patients, advocates, and\u00a0experts inside and outside the Committee who were eloquent in their\u00a0statements about the seriousness, complexity, and chronicity of this\u00a0disease, and the misunderstanding and dismissiveness of clinicians\u00a0and others. I stand by the major contribution of the Committee\u2019s work\u00a0for these patients.<\/p>\n