The new diagnostic criteria for SEID are based upon important methodological shortcomings

@ informahealthcare.com, April 27, 2015:

A critical analysis of the proposal of the Institute of Medicine to replace Myalgic Encephalomyelitis and Chronic Fatigue Syndrome by a new diagnostic entity called Systemic Exertion Intolerance Disease Posted online on April 27, 2015. (doi:10.1185/03007995.2015.1045472) Frank NM Twisk ME-de-patiënten Foundation, The Netherlands Address for correspondence: Frank NM Twisk MBA BEd BEc, Zonnedauw 15, 1905 HB Limmen, The Netherlands. Tel. +31-72-505 4775; frank.twisk@hetnet.nl Abstract

 The Institute of Medicine (IOM) recently published their report in response to an assignment ‘to define diagnostic criteria for Myalgic Encephalomyelitis (ME)/chronic fatigue syndrome (CFS), to propose a process for reevaluation of these criteria in the future, and to consider whether a new name for this disease is warranted’. The basic preassumption of the IOM committee for the development of evidence-based diagnostic criteria for ME/CFS was that ME and CFS denote conditions with similar symptoms, hence ME/CFS.

The IOM committee recommends
1) that ME/CFS will be renamed “systemic exertion intolerance disease” (SEID); and that a new code should be assigned to SEID in the International Classification of Diseases (ICD), replacing the existing codes for ME (a neurological disease: G93.3) and CFS (“signs, symptoms, and abnormal clinical and laboratory findings, not elsewhere classified”: R53.82).

2) that a diagnosis SEID should be made if the new diagnostic criteria are met;

3) that the Department of Health and Human Services develops a toolkit appropriate for screening and diagnosing patients; and

4) that a multidisciplinary group re-examines the new diagnostic criteria when necessary.

This editorial reviews the working procedure of the IOM and two of the outcomes: the recommendation to introduce a new clinical entity (SEID) and new diagnostic criteria.

Based upon the contents of the report, and the arguments of the IOM, a search of PubMed and the archive of the Journal of Chronic Fatigue using the search terms ME (and old synonyms) and CFS, and a search of PubMed related to the five core symptoms of SEID was conducted.

Reviewing the working method and the recommendations, it is concluded that the new diagnostic criteria for SEID are based upon important methodological shortcomings and that the introduction of SEID to replace both ME and CFS has several profound negative consequences outweighing the advantages.

Keywords Myalgic Encephalomyelitis, chronic fatigue syndrome, systemic exertion intolerance disease, diagnosis, assessment, methodology