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Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

BEYOND MYALGIC ENCEPHALOMYELITIS/
CHRONIC FATIGUE SYNDROME

Redefining an Illness

Committee on the Diagnostic Criteria for
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Board on the Health of Select Populations

INSTITUTE OF MEDICINE
               OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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THE NATIONAL ACADEMIES PRESS   500 Fifth Street, NW   Washington, DC 20001

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

This study was supported by Contract No. HHSN263201200074I between the National Academy of Sciences and the National Institutes of Health. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project.

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Library of Congress Control Number: 2015934699

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Copyright 2015 by the National Academy of Sciences. All rights reserved.

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Cover design by LeAnn Locher, LeAnn Locher & Associates.

Suggested citation: IOM (Institute of Medicine). 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

Knowing is not enough; we must apply.
Willing is not enough; we must do.
”      

                                                —Goethe

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INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and Medicine

The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences.

The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is president of the National Academy of Engineering.

The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Victor J. Dzau is president of the Institute of Medicine.

The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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COMMITTEE ON THE DIAGNOSTIC CRITERIA FOR MYALGIC
ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME

ELLEN WRIGHT CLAYTON (Chair), Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN

MARGARITA ALEGRÍA, Harvard Medical School, Boston, MA

LUCINDA BATEMAN, Fatigue Consultation Clinic, Salt Lake City, UT

LILY CHU, International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Chicago, IL; Stanford University ME/CFS Initiative, Stanford, CA

CHARLES S. CLEELAND, University of Texas MD Anderson Cancer Center, Houston

RONALD W. DAVIS, Stanford University School of Medicine, Stanford, CA

BETTY DIAMOND, The Feinstein Institute for Medical Research, Manhasset, NY

THEODORE G. GANIATS, University of Miami, FL

BETSY KELLER, Ithaca College, Ithaca, NY

NANCY KLIMAS, Nova Southeastern University, Miami, FL

A. MARTIN LERNER, Oakland University, William Beaumont School of Medicine, Rochester, MI

CYNTHIA MULROW, University of Texas Health Science Center, San Antonio

BENJAMIN H. NATELSON, Mount Sinai Beth Israel, New York, NY

PETER ROWE, Johns Hopkins University, Baltimore, MD

MICHAEL SHELANSKI, Columbia University, New York, NY

Consultants

RONA BRIERE, Briere Associates Inc., Felton, PA

RENÉ GONIN, Westat, Inc., Rockville, MD

TROY PETENBRINK, Caduceus Marketing, Washington, DC

IOM Staff

CARMEN C. MUNDACA-SHAH, Study Director

KATE MECK, Associate Program Officer (until September 2014)

JONATHAN SCHMELZER, Research Associate (from September 2014)

ADRIANA MOYA, Senior Program Assistant (until May 2014)

SULVIA DOJA, Senior Program Assistant (from May 2014)

DORIS ROMERO, Financial Associate

FREDERICK ERDTMANN, Director, Board on the Health of Select Populations

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Reviewers

This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:

Italo Biaggioni, Vanderbilt University

Susan Cockshell, University of Adelaide

Stephen Gluckman, University of Pennsylvania

Maureen R. Hanson, Cornell University

Ben Katz, Ann and Robert H. Lurie Children’s Hospital of Chicago

Charles Lapp, Hunter-Hopkins Center, P.A.

Michael L. LeFevre, University of Missouri School of Medicine

Susan Levine, Medical Office of Susan M. Levine

Jose Montoya, Stanford University Medical Center

Daniel Peterson, Sierra Internal Medicine

Michael I. Posner, University of Oregon

Katherine Rowe, Royal Children’s Hospital

Christopher Snell, University of the Pacific

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Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Rudd Vermeulen, CFS/ME Medical Centre

Yasuyoshi Watanabe, RIKEN Center for Life Science Technologies

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the report’s conclusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by David Challoner, University of Florida, and Georges Benjamin, American Public Health Association. Appointed by the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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4-1 Percentage of ME/CFS patients and healthy controls reporting PEM symptoms of at least moderate severity that occurred at least half of the time during the past 6 months

4-2 Percentage of ME/CFS patients and healthy controls reporting sleep-related symptoms of at least moderate severity that occurred at least half of the time during the past 6 months

4-3 Percentage of ME/CFS patients and healthy controls reporting neurocognitive manifestations of at least moderate severity that occurred at least half of the time during the past 6 months

5-1 Percentage of ME/CFS patients and healthy controls reporting pain symptoms of at least moderate severity that occurred at least half of the time for the past 6 months

5-2 Percentage of ME/CFS patients and healthy controls reporting immune-related symptoms of at least moderate severity that occurred at least half of the time for the past 6 months

5-3 Percentage of ME/CFS patients and healthy controls reporting neuroendocrine manifestations of at least moderate severity that occurred at least half of the time for the past 6 months

7-1 Diagnostic algorithm for ME/CFS

TABLES

1-1 Targeted Search Results: Adults

1-2 Targeted Search Results: Pediatrics

3-1 Elements of Selected Case Definitions and Diagnostic Criteria for ME/CFS

4-1 Mean VT Score on the MOS SF-36 for ME/CFS Versus Other Fatigue Conditions

7-1 Operationalizing the Proposed Criteria for Diagnosis of ME/CFS for Major Symptoms of the Illness

7-2 Assessing Other Symptoms/Manifestations of ME/CFS That May Support Diagnosis

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Preface

This study was sponsored by the U.S. Department of Health and Human Services Office on Women’s Health, the National Institutes of Health, the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration, the Agency for Healthcare Research and Quality, and the Social Security Administration, and conducted by a committee convened by the Institute of Medicine (IOM). The committee was asked to define diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome, 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 committee carefully reviewed the peer-reviewed literature on the multifaceted manifestations of this disease, and taking into account the clearly expressed views of hundreds of patients and their advocates, developed evidence-informed diagnostic criteria for this complex, multisystem, frequently undiagnosed, and often life-altering condition. The committee was able to redefine the diagnostic criteria for this disease so that they are easy to understand and apply and capture the essence of the disease’s unique symptomatology. The committee recommends an evidence-based, disinterested procedure by which these criteria can be refined in the future on the basis of new research.

Listening to the comments and testimony provided for this study, as well as examining advocacy websites and the Voice of the Patient report, the committee determined that the name “chronic fatigue syndrome” has done a disservice to many patients and that the name “myalgic encephalomyelitis” does not accurately describe the major features of the disease. In their place, the committee proposes “systemic exertion intolerance disease” as a name that better captures the full scope of this disorder.

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

The committee owes a debt of gratitude to all of those who volunteered their time and shared their expertise by presenting at its public meetings, including Dr. Sara Eggers, Dr. Leonard A. Jason, Dr. Akifumi Kishi, Dr. Gudrun Lange, Dr. Nancy Lee, Dr. Susan Maier, and Dr. Elizabeth Unger. The committee also thanks all the patient advocates who spoke during its public sessions, including Lori Chapo-Kroger, Carol Head, Gabby Klein, Joseph Landson, Pat LaRosa, Denise Lopez-Majano, Robert Miller, Charmian Proskauer, Jennie Spotila, and Annette Whittemore. Collectively, the wide variety of viewpoints expressed by these speakers provided valuable insight into the complexity of the disease and helped the committee develop its approach to and thought process regarding its statement of task.

The committee wishes to express its sincere appreciation to National Academies Research Center staff Daniel Bearss and Rebecca Morgan for their support with the comprehensive literature review conducted for this study. The evidence reviewed was enriched by research materials shared by agencies and organizations such as the CDC Multi-Site Clinical Study of CFS, Chronic Fatigue Initiative, Massachusetts CFIDS/ME & FM Association, PANDORA Org, Phoenix Rising, Solve ME/CFS Initiative, and by researchers and advocates, including Dr. Byron Hyde, Dr. Leonard Jason, Dr. Lisa Petrison, Dr. Suzanne Vernon, Mary Dimmock, Denise Lopez-Majano, Courtney Miller, and Jennie Spotila. The committee is extremely grateful for these contributions.

The committee also is grateful to the study consultants: Rona Briere for copyediting the report; René Gonin for his support in interpreting the methodology of relevant literature; LeAnn Locher for designing the cover of the report; and Troy Petenbrink, who provided his expertise in health communications to help the committee develop a dissemination plan for the recommendations in this report.

The committee could not have done its work without the extraordinary efforts of the staff of the IOM, including Carmen Mundaca-Shah, study director; Kate Meck, associate program officer; Jonathan Schmelzer, research associate; and Adriana Moya and Sulvia Doja, senior program assistants. Their work was invaluable.

Finally, the committee would like to offer its profound thanks to the many patients and advocates who offered their knowledge, experiences, and feedback to inform its work throughout the study process. The success of this project is directly related to the support and assistance received from those passionate about this topic. The committee’s goal in addressing this task was to ensure that these patients receive the diagnoses and treatment they require and deserve. It is to them and to their return to health that this work is dedicated.

Ellen Wright Clayton, Chair                                               
Committee on the Diagnostic Criteria for                       
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Page xvii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Acronyms and Abbreviations

5-HT

5 hydroxytryptamine

5-HTT

serotonin transporter

17-OHP

17-hydroxyprogesterone

A4

androstenedione

AAMC

Association of American Medical Colleges

ACR

American College of Rheumatology

ACTH

adrenocorticotropin hormone

ADH

antidiuretic hormone

AHRQ

Agency for Healthcare Research and Quality

AIDS

acquired immune deficiency syndrome

ANA

antinuclear antibody

ANT

Attention Network Test

ASP

Autonomic Symptom Profile

AVP

arginine vasopressin

B.

Borrelia

BMI

body mass index

BPI

Brief Pain Inventory

bpm

beats per minute

CANTAB

Cambridge Neuropsychological Test Automated Battery

CART

classification and regression tree

CBT

cognitive-behavioral therapy

CCC

Canadian Consensus Criteria

Page xviii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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CDC

Centers for Disease Control and Prevention

CFIDS

chronic fatigue and immune dysfunction syndrome

CFS

chronic fatigue syndrome

CFSAC

Chronic Fatigue Syndrome Advisory Committee

CHF

congestive heart failure

CHQ

Child Health Questionnaire

CMV

cytomegalovirus

COMPASS

Composite Autonomic Symptom Score

CPAP

continuous positive airway pressure

CPET

cardiopulmonary exercise test

CRH

corticotropin-releasing hormone

CVDB

Chronic Viral Diseases Branch

DHEA

dehydroepiandrosterone

DPHQ

DePaul Pediatric Health Questionnaire

dsDNA

double-stranded deoxyribonucleic acid

DSM

Diagnostic and Statistical Manual of Mental Disorders

EBV

Epstein-Barr virus

EDS

Ehlers-Danlos syndrome

EEG

electroencephalogram

ELISA

enzyme-linked immunosorbent assay

FDA

Food and Drug Administration

FDI

Functional Disability Inventory

FIQ

Fibromyalgia Impact Questionnaire

FIQR

Revised Fibromyalgia Impact Questionnaire

FM

fibromyalgia

fMRI

functional magnetic resonance imaging

FMS

fibromyalgia syndrome

GAO

Government Accountability Office1

HC

healthy control

HD

hemodialysis

HepC

chronic hepatitis C

HHS

Department of Health and Human Services

HHV

human herpes virus

HIV

human immunodeficiency virus

HPA

hypothalamic-pituitary-adrenal (axis)

HRQOL

health-related quality of life

_____________

1 Known as General Accounting Office until 2004.

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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HTLV

human T-cell lymphotropic virus

IACFS/ME

International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

IADL

instrumental activity of daily living

IBS

irritable bowel syndrome

ICD-10

International Classification of Diseases (Tenth Revision)

IDEA

Individuals with Disabilities Education Act

IFA

immunofluorescence assay

IGF-1

insulin-like growth factor 1

IGFBP-1

insulin-like growth factor-binding protein 1

IgG

immunoglobulin G

IgM

immunoglobulin M

IL

interleukin

IOM

Institute of Medicine

IVIG

intravenous immunoglobulin

JAK-STAT

Janus kinase/signal transducer and activator of transcription

LBNP

lower-body negative pressure

LDST

low-dose synacthen test

MCS

multiple chemical sensitivity

MD

major depression

MDI

medically determinable impairment

ME

myalgic encephalomyelitis

ME-ICC

International Consensus Criteria for ME

MOS

Medical Outcomes Study

MPS

myofascial pain syndrome

MRI

magnetic resonance imaging

MRS

magnetic resonance spectroscopy

MS

multiple sclerosis

MSD

musculoskeletal disease

MSIDS

multi-systemic infectious disease syndrome

MSLT

multiple sleep latency test

NICE

British National Institute for Health and Clinical Excellence

NIH

National Institutes of Health

NK

natural killer

NKCS

nature killer cells syndrome

NMH

neurally mediated hypotension

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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NREM

non-rapid eye movement

NYHA

New York Heart Association Functional Classification

ODP

Office of Disease Prevention

OFFER

Organization for Fatigue & Fibromyalgia Education & Research

OGS

Orthostatic Grading Scale

OH

orthostatic hypotension

OHQ

Orthostatic Hypotension Questionnaire

ORWH

Office of Research on Women’s Health

OWH

Office on Women’s Health

P2P

Pathways to Prevention

PANDORA

Patient Alliance for Neuro-endocrine-immune Disorders Organization for Research and Advocacy

PASAT

Paced Auditory Serial Addition Test

PBL

peripheral blood lymphocyte

PBMC

peripheral blood mononuclear cell

PCOCA

Patient-Centered Outreach and Communication Activity

PCP

primary care provider

PCR

polymerase chain reaction

Peds QL

Pediatrics Quality of Life Inventory

PEM

post-exertional malaise

PENE

post-exertional neuroimmune exhaustion

PET

positron emission tomography

POTS

postural orthostatic tachycardia syndrome

PPS

post-polio syndrome

PROMIS

Patient-Reported Outcomes Measurement Information System

PSG

polysomnography

PSQI

Pittsburgh Sleep Quality Index

PTSD

posttraumatic stress disorder

QOL

quality of life

QUADAS

Quality Assessment of Diagnostic Accuracy Studies (tool)

RA

rheumatoid arthritis

REM

rapid eye movement

RNA

ribonucleic acid

RP

role-physical

SAHS

sleep apnea/hypopnea syndrome

SDB

sleep disordered breathing

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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SEID

systemic exertion intolerance disease

SF-36

Short Form 36-Item Questionnaire

SI

Symptom Inventory

SIP-ab

Sickness Impact Profile-alertness behavior

SSA

Social Security Administration

SSc

scleroderma/systemic sclerosis

SWS

slow wave sleep

TMJ

temporomandibular joint syndrome

TNF

tumor necrosis factor

TPRI

total peripheral resistance index

TSH

thyroid-stimulating hormone

VAS

visual analog scale

VCA

viral capsid antigen

VT

vitality (subscale of the MOS SF-36)

WMS-R

Wechsler Memory Scale-Revised

WSAS

Work and Social Adjustment Scale

Page xxii Cite
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Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological - rather than psychological - nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness - systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical - not a psychiatric or psychological - illness. This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report's most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.

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