Tuesday, February 10, 2015

First notes on IOM report

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
 
"Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness"
 
"Knowing is not enough; we must apply.
Willing is not enough; we must do."
—Goethe
 
That's right, Medical Community, you need to apply what we already know (that this is not just All In Your Head) and DO something other than merely send the patients home with no help.  This report is worth your time if you got into medicine in order to help people, rather than just to make money.

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 ALEGR√ćA, 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 DAVIS, Stanford University School of Medicine, Stanford, CA
BETTY DIAMOND, The Feinstein Institute for Medical Research, Manhasset, NY
THEODORE GANIATS, University of Miami, 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 NATELSON, Mount Sinai Beth Israel, New York, NY
PETER ROWE, Johns Hopkins University, Baltimore, MD
MICHAEL SHELANSKI, Columbia University, New York, NY
 
REVIEWERS:
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
Rudd Vermeulen, CFS/ME Medical Centre
Yasuyoshi Watanabe, RIKEN Center for Life Science Technologies
 
So they did have experts in CFS on the committee, and also reviewing the draft report.  That's a good thing, far better than committees full of people who've never treated an actual patient, may never have even seen a patient, like the original committee 30 years ago.......
 
Names like Klimas, Natelson, Montoya, Peterson give me hope that this will be about the disease I have, rather than about depression misdiagnosed as CFS to reach a pre-determined conclusion that it's all in our heads.
 

CONTENTS:
PREFACE xv
ACRONYMS AND ABBREVIATIONS xvii
SUMMARY 1
1 INTRODUCTION 15
Charge to the Committee, 16
Context for This Study, 17
The Committee's Approach, 19
Overview of the Report, 24
References, 25
2 BACKGROUND 27
History of ME/CFS, 27
Terminology, 29
Burden of ME/CFS, 31
References, 33
3 CURRENT CASE DEFINITIONS AND DIAGNOSTIC
CRITERIA, TERMINOLOGY, AND SYMPTOM
CONSTRUCTS AND CLUSTERS 37
Case Definitions and Diagnostic Criteria, 38
Terminology, 57
Symptom Constructs and Clusters, 60
References, 66
4 REVIEW OF THE EVIDENCE ON MAJOR ME/CFS SYMPTOMS AND MANIFESTATIONS 71
Limitations of the Research Base, 71
Fatigue and Its Impact on Function, 73
Post-Exertional Malaise (PEM), 78
Sleep-Related Symptoms, 86
Neurocognitive Manifestations, 96
Orthostatic Intolerance and Autonomic Dysfunction, 107
References, 119
5 REVIEW OF THE EVIDENCE ON OTHER ME/CFS
SYMPTOMS AND MANIFESTATIONS 141
Pain, 141
Immune Impairment, 147
Neuroendocrine Manifestations, 152
Infection, 157
References, 162
6 PEDIATRIC ME/CFS 181
Post-Exertional Malaise (PEM), 184
Orthostatic Intolerance and Autonomic Dysfunction, 185
Neurocognitive Manifestations, 189
Sleep-Related Symptoms, 190
Infection, 191
Immune Impairment, 193
Neuroendocrine Manifestations, 195
Other Symptoms, 198
Symptom Constructs, 199
Summary, 200
References, 201
7 RECOMMENDATIONS 209
Making the Diagnosis, 213
Disseminating the Diagnostic Criteria, 225
Updating the Diagnostic Criteria, 226
Naming the Disorder, 227
Closing Thoughts, 228
References, 228
8 DISSEMINATION STRATEGY 231
Objective, 231
Context, 231
Strategic Choices, 235
Dissemination Activities, 239
Evaluation, 246
References, 246
APPENDIXES
A PUBLIC SESSION AGENDAS 249
B GRADE GRID TEMPLATE 253
C DISABILITY IN ME/CFS 257
D QUESTIONNAIRES AND TOOLS THAT MAY BE USEFUL
FOR ASSESSING ME/CFS SYMPTOMS 269
E BIOGRAPHICAL SKETCHES OF COMMITTEE
MEMBERS, CONSULTANTS, AND STAFF 273
 
The table of contents already addresses symptoms other than "tired" -- this, too, gives me hope that this report is finally going to be something worth handing to a doctor with instructions "here, read this" rather than fear that it's just going to tell them to pump us full of anti-depressants and happy thoughts because we just need a kick in the butt.
 

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