Saturday, February 14, 2015
1. The report emphasizes the distinct clinical features of the disease. Post-exertional intolerance is the symptom most likely to differentiate this illness. Systemic exertional intolerance disease --SEID--- fits. Period.
2. This disease IS a systemic disease. Research into pathogens, circulatory abnormalities, and immunological abnormalities is a must if we are to make progress. Such progress will be more difficult under a "fatigue syndrome" OR a pain-centered/brain-foremost term.
CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfulness syndrome. CFS needs to be placed in the medical dustbin of obsolete names as soon as possible.
But I'm not feeling very excited about what is being proposed – systemic exertion intolerance disease or acronym SEID
Read more: Diagnosing Chronic Fatigue Syndrome the IOM Way: the IOM Report #3 http://www.cortjohnson.org/blog/2015/02/13/diagnosing-mecfs-iom-way-iom-report-3/
Friday, February 13, 2015
Hi everyone! I will be appearing Monday morning live at 10am ET/7am PT on the national NPR show, On Point along with Dr. Ellen Wright Clayton, chair of the IOM committee, Dr. Derek Enlander of Mt. Sinai and Dr. Daniel Neides of the Cleveland Clinic.
The show will discuss Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and the new name and definition for Systemic Intolerance Disease (SEID). I will also talk a bit about the film.
It is a one hour, live call in show, so you can call in with your questions or comments during the broadcast.
Here is how to call on point: http://onpoint.wbur.org/contact-on-point
You can listen to the live broadcast online here: http://www.wbur.org/listen/live
Or find the broadcast time on your local station here (some times are live, some are re-broadcasts): http://www.wbur.org/syndication
And here is how you can listen online after the show: http://www.npr.org/podcas…/510053/on-point-with-tom-ashbrook
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By Jerrold Spinhirne
The US Department of Health and Human
Services (HHS) has paid the non-profit
Institute of Medicine (IOM)
( http://on.fb.me/1Avyxtq) $1,000,000
for the naming rights to the established
neurological disease Myalgic
Encephalomyelitis (ICD G93.3 ME).
This is not science, but the
exercise of raw political and
The ridiculous name the IOM committee
came up with after "much thought" has no
legitimacy whatsoever and should be
scrapped before more precious time and
resources are wasted.
The disease was named myalgic
encephalomyelitis originally in a 1956 Lancet
editorial later attributed to Dr. E. Donald
Drs. A. Melvin Ramsay and John Richardson
also used the name ME at this time.
The name ME was based on careful clinical
examination of thousands of patients from
over a dozen outbreaks of the epidemic form
of the disease beginning with an outbreak in
Los Angeles in 1934.
The 1956 Lancet editorial, "A New Clinical
Entity" said this about the name of the
"From the purely practical standpoint it
would be useful to have a name for this
As the most helpful single feature in the
recognition of this syndrome in the past has
been the predominately normal cerebrospinal
fluid, the names which have already been
suggested, "Iceland disease" and "Akureyri
disease," are not really appropriate.
The objections to any but a purely
descriptive name for a disorder without a
known cause or established pathology are
For this reason, the term "benign myalgic
encephalomyelitis" may be acceptable.
It in no way prejudices the argument for or
against a single or related group of causal
agents; and it does describe some of the
striking features of a syndrome
(1) symptoms and signs of damage
to the brain and spinal chord, in a
greater or lesser degree;
(2) protracted muscle pain with
paresis [partial paralysis, muscle
weakness] and cramp;
(3) emotional disturbances in
(4) normal C.S.F.;
(5) involvement, in some variants,
of the reticuloendothelial system
[part of the immune response
(6) a protracted course with
relapses in severe cases; and
(7) a relatively benign outcome.
[Death did not occur immediately
It remains to identify this syndrome more
precisely; but we believe its characteristics
are now sufficiently clear to differentiate it
from poliomyelitis, epidemic myalgia,
glandular fever, the forms of epidemic
encephalitis already described, and, need it
be said, hysteria."
This is the history of
ME that HHS is
seeking to erase by
hiring the IOM.
Making ME disappear serves
several purposes for HHS:
1.) It covers up the series of errors and
misconduct at the NIH and CDC in dealing
with the disease beginning 1985.
HHS wants to preserved the perceived
authority and credibility of these agencies,
even if it means contributing to increased
levels of disability and premature death in
2.) It protects the economic health of the
private insurance industry which HHS
evidently values more highly than the public
3.) It saves HHS the cost of appropriately
funding research on a major neurological
Instead, HHS gets away with spending a
pittance every year on a trivialized
fatigue-based illness that has been greeted
with skepticism by doctors and the public.
Seeing that the deception created
around CFS was breaking down after 30
years, HHS wants to begin the cycle
afresh by creating a new, updated
version of CFS, using the IOM, with yet
another inappropriate, trivializing name.
This new pseudo-diagnosis
will then be used to bury ME
This must not be allowed to
happen all over again.
PEM, NOT Chronic Fatigue, is why patients
are bedridden, homebound, unemployed,
and unable to walk a block.
Thursday, February 12, 2015
Here is the kind of ignorant prejudice a new name is not going to overcome. The only thing that's going to change the minds of unthinking people like this is if they can order a blood test.
Wednesday, February 11, 2015
Tuesday, February 10, 2015
No, I'm really, really not. And doctors should not be allowed to say that anymore.
The committee reviewed literature on a number of symptoms in ME/CFS patients:
•Orthostatic intolerance and autonomic dysfunction
•Symptom Constructs and Clusters
•Educate about the disease. ME/CFS is a serious systemic disease.
•Recognize ME/CFS core symptoms and make a diagnosis.
•Improve care for ME/CFS patients:
•Having a diagnosis
•Treatment of the symptoms
•Avoid the prescription of potentially harmful therapies
undiagnosed, 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.
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 more fully captures the full scope of this disorder."
several reasons, including skepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient's imagination. Less than one-third of medical schools include ME/CFS-specific information in the curriculum
(Peterson et al., 2013), and only 40 percent of medical textbooks include
information on the disorder (Jason et al., 2010). ME/CFS often is seen as
a diagnosis of exclusion, which also can lead to delays in diagnosis or to
misdiagnosis of a psychological problem (Bayliss et al., 2014; Fossey et al.,
2004; Jason and Richman, 2008). Once diagnosed, patients frequently
complain that their health care providers do not know how to deliver
appropriate care for their condition, and often subject them to treatment
strategies that exacerbate their symptoms.
extracting their findings and using an adapted "GRADE grid" to
record judgments as to whether there was sufficient evidence that
certain symptoms and abnormalities define either ME/CFS or a
particular subtype of the disorder (see Appendix B for the grid
new name for ME/CFS, and operationalizes the new criteria.
complex, multisystem disease that frequently and dramatically limits the
activities of affected patients. In its most severe form, this disease can consume
the lives of those whom it afflicts. It is "real." It is not appropriate to
dismiss these patients by saying, "I am chronically fatigued, too."
chronic fatigue syndrome if diagnostic criteria are met following
an appropriate history, physical examination, and medical work-up.
A new code should be assigned to this disorder in the International
Classification of Diseases, Tenth Edition (ICD-10), that is not linked
to "chronic fatigue" or "neurasthenia."
research on ME/CFS conducted to date. Remarkably little research funding
has been made available to study the etiology, pathophysiology, and
effective treatment of this disease, especially given the number of people
afflicted. Thus, the committee was unable to define subgroups of patients
or even to clearly define the natural history of the disease. More research
Doctors MUST use the available information, even if it's given to them by patients. Paternalistically patting her on the head and saying "don't believe everything you read online" ignores the fact that there is a lot of GOOD information online (including this IOM report). Doctors MUST drop their prejudices about women patients and about internet-based information, in order to give the best care.
value of creating a name that conveys the central elements of this disease, a
practice for which there is much precedent in medicine for disorders whose
etiology or pathophysiology is not yet well understood. After extensive
consideration and mindful of the concerns expressed by patients and their
advocates, the committee recommends that the disorder described in this report be named "systemic exertion intolerance disease" (SEID). "Systemic exertion intolerance" captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Board on the Health of Select Populations
Institute of Medicine of the National Academies
Willing is not enough; we must do."
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 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
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
ACRONYMS AND ABBREVIATIONS xvii
1 INTRODUCTION 15
Charge to the Committee, 16
Context for This Study, 17
The Committee's Approach, 19
Overview of the Report, 24
2 BACKGROUND 27
History of ME/CFS, 27
Burden of ME/CFS, 31
3 CURRENT CASE DEFINITIONS AND DIAGNOSTIC
CRITERIA, TERMINOLOGY, AND SYMPTOM
CONSTRUCTS AND CLUSTERS 37
Case Definitions and Diagnostic Criteria, 38
Symptom Constructs and Clusters, 60
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
5 REVIEW OF THE EVIDENCE ON OTHER ME/CFS
SYMPTOMS AND MANIFESTATIONS 141
Immune Impairment, 147
Neuroendocrine Manifestations, 152
6 PEDIATRIC ME/CFS 181
Post-Exertional Malaise (PEM), 184
Orthostatic Intolerance and Autonomic Dysfunction, 185
Neurocognitive Manifestations, 189
Sleep-Related Symptoms, 190
Immune Impairment, 193
Neuroendocrine Manifestations, 195
Other Symptoms, 198
Symptom Constructs, 199
7 RECOMMENDATIONS 209
Making the Diagnosis, 213
Disseminating the Diagnostic Criteria, 225
Updating the Diagnostic Criteria, 226
Naming the Disorder, 227
Closing Thoughts, 228
8 DISSEMINATION STRATEGY 231
Strategic Choices, 235
Dissemination Activities, 239
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
She added, "The level of response is much more than would be seen with deconditioning," with reference to the belief voiced by some clinicians that physical abnormalities in these patients are merely a result of their lack of activity. Indeed, Dr Rowe noted, "That argument is untenable with people who have been physically active, some of them athletes, [before becoming ill]. The deconditioning argument is flawed in that respect."
Viewpoint | February 10, 2015
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An IOM
Report on Redefining an Illness
Ellen Wright Clayton, MD, JD1
1Center for Biomedical Ethics and Society, Vanderbilt University,
JAMA. Published online February 10, 2015. doi:10.1001/jama.2015.1346
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a
multisystem and often long-lasting disorder, with manifestations that
can cause substantial morbidity and can severely impair patients'
health and well-being. It is estimated that between 836 000 and 2.5
million individuals are affected in the United States.1,2 Patients
with ME/CFS are typically unable to perform their normal activities,
and as many as one-fourth are homebound or bedridden, sometimes for
extended periods.3 As a result, the personal and social effects and
ramifications of this disease are enormous.
However, ME/CFS is poorly accepted and poorly understood, and the
characteristics necessary to make the diagnosis are contested.
Patients' concerns are often met with dismay and skepticism, if not
outright dismissal. Clinicians, in turn, are confronted by competing
definitions, which were usually developed for research and are quite
complex and difficult to implement in a busy clinical practice.
Patients who are fortunate enough and persistent enough to receive a
correct diagnosis frequently report long delays before their disorder
was identified. It is almost certainly the case that the majority of
affected patients are never diagnosed. This is unfortunate because
effective symptom management is often available, whereas the wrong interventions can make symptoms worse.
Making the diagnosis is essential for providing appropriate care. To
that end, the Department of Health and Human Services (HHS), together
with the National Institutes of Health, US Social Security
Administration, US Food and Drug Administration, Centers for Disease
Control and Prevention, and Agency for Healthcare Research and
Quality, tasked the Institute of Medicine (IOM) to develop
"evidence-based clinical diagnostic criteria for ME/CFS for use by
clinicians, using a consensus-building methodology," with input from
patients and clinicians; to "recommend whether new terminology for
ME/CFS should be adopted"; and to create plans for disseminating these
conclusions to clinicians. To meet its charge, the IOM committee heard
testimony from patients, clinicians, and researchers, carefully
reviewed almost one thousand public comments, and conducted a
comprehensive literature review. Currently available evidence
permitted the committee, in its newly released report,4 to identify
symptoms and findings that collectively identify the disorder for
which a new name was proposed, as discussed below. These criteria are
set forth in the accompanying Box.
IOM Diagnostic Criteria for Systemic Exertion Intolerance Disease
Diagnosis requires that the patient have the following 3 symptoms:
1. A substantial reduction or impairment in the ability to engage in
preillness levels of occupational, educational, social, or personal
activities that persists for more than 6 months and is accompanied by
fatigue, which is often profound, is of new or definite onset (not
lifelong), is not the result of ongoing excessive exertion, and is not
substantially alleviated by rest AND
2. Postexertional malaisea AND
3. Unrefreshing sleep
At least 1 of the 2 following manifestations is also required:
1. Cognitive impairmenta OR
2. Orthostatic intolerance
Frequency and severity of symptoms should be assessed. The diagnosis
of systemic exertion intolerance disease (myalgic
encephalomyelitis/chronic fatigue syndrome) should be questioned if
patients do not have these symptoms at least half of the time with
moderate, substantial, or severe intensity.
To assist with diagnosis, the committee developed an algorithm
incorporating these criteria as well as an extensive list of findings
on history, physical examination, and, when needed to clarify
symptoms, tests that support the diagnosis. Further details, including
recommended checklists, are contained in the committee's report.4 The
committee called on HHS to develop focused, evidence-based tools that
will help clinicians make this diagnosis efficiently. Patients with
ME/CFS, like many other patients, often have comorbid conditions that
clinicians also must be prepared to identify and treat.
The committee concluded that a new name—systemic exertion intolerance
disease—was warranted to capture the essence of this disorder until
causation and pathophysiology are better delineated by research.
Although patients differ in their triggers and manifestations, the
salient feature of this disorder is that any kind of
exertion—physical, cognitive, emotional—can adversely affect these
patients in many aspects of their biological function and in their
lives, frequently severely and often for a prolonged period. "Myalgic
encephalomyelitis," for which many people who provided input to the
IOM study through testimony and public comments advocated, simply does
not describe this disorder. "Chronic fatigue syndrome" fails to depict
the complexity of this disease and is also unacceptable to many
patients and their advocates, who reported that this term leads
clinicians and others to belittle or even dismiss their disease. The
new name, which should be accompanied by a new International
Statistical Classification of Diseases and Related Health Problems,
Tenth Revision (ICD-10) code, also distinguishes this definition from
previous ones. Thus, patients who meet these new criteria should be
diagnosed with systemic exertion intolerance disease even if they also
meet criteria for earlier variants of ME/CFS.
Patients will not be identified and treated if clinicians do not know
about the disorder and how to diagnose it. To that end, the IOM report
sets forth a variety of strategies that must be pursued to facilitate
dissemination of these recommendations to clinicians, patients, and
K-12 education professionals, such as school nurses and psychologists.
The IOM is creating educational materials for patients and clinicians.
Although the committee was able to make high-quality recommendations
based on the available evidence, the need for more research is clear.
Most of the research that has been conducted to date has compared
small numbers of affected patients with healthy controls, not with
patients with other complex fatiguing disorders. This fact, coupled
with years of limited funding, means that despite the dedicated
efforts of researchers in this field, many questions remain
unanswered. More needs to be learned about what causes this disorder,
what factors affect its course, and what therapies work for which
patients. New knowledge may make it possible to identify subsets of
systemic exertion intolerance disease and to provide the foundation
for better diagnosis and treatment.
The IOM's new report4 provides the foundation for greater action to diagnose and treat patients with systemic exertion intolerance disease and to learn more about the disease that affects them. This opportunity must be seized. These patients, who for too long have
received inadequate attention in research and clinical settings, deserve better.
Corresponding Author: Ellen Wright Clayton, MD, JD, Craig-Weaver
Professor of Pediatrics, Professor of Law, and Co-Founder, Center for
Biomedical Ethics and Society, Vanderbilt University, 2525 W End Ave,
Ste 400, Nashville, TN 37203 (firstname.lastname@example.org).
Published Online: February 10, 2015. doi:10.1001/jama.2015.1346.
Conflict of Interest Disclosures: The author has completed and
submitted the ICMJE Form for Disclosure of Potential Conflicts of
Interest. Dr Clayton reports receiving speakers' fees from Novartis
for a talk on research ethics in genomics.
Funding/Support: The IOM report described in this Viewpoint was
sponsored by the Office on Women's Health within the US Department of
Health and Human Services, National Institutes of Health, Centers for
Disease Control and Prevention, US Food and Drug Administration,
Agency for Healthcare Research and Quality, and US Social Security
Additional Contributions: Members of the IOM Committee on Diagnostic
Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which
wrote the report described in this Viewpoint, were Ellen Wright
Clayton (chair), Margarita Alegría, Lucinda Bateman, Lily Chu, Charles
S. Cleeland, Ronald Davis, Betty Diamond, Theodore Ganiats, Betsy
Keller, Nancy Klimas, A. Martin Lerner, Cynthia Mulrow, Benjamin
Natelson, Peter Rowe, and Michael Shelanski. Carmen C. Mundaca-Shah
was the study director.
1. Jason LA, Torres-Harding SR, Njoku MGC. The face of CFS in the
U.S. CFIDS Chronicle. 2005-2006:16-21.
2. Jason LA, Richman JA, Rademaker AW, et al. A community-based
study of chronic fatigue syndrome. Arch Intern Med.
3. Marshall R, Paul L, Wood L. The search for pain relief in
people with chronic fatigue syndrome: a descriptive study. Physiother
Theory Pract. 2011;27(5):373-383.
4. IOM (Institute of Medicine). Beyond Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.
Washington, DC: The National Academies Press; 2015.
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Twenty Years and Counting
Tuesday, February 10, 2015
IOM's S.E.I.D. and the W.H.O
While I digest the IOM's report released
today, Beyond Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome: Redefining an
Illness - I'm posting the following
comments on it from my friend and fellow
advocate, Jerrold Spinhirne.
Thank you, Jerry!
The IOM "ME/CFS" report
makes significant errors
regarding the international
classification ME and CFS.
On page 23, the report states:
In the World Health Organization''s
International Classification of Diseases,
Tenth Revision, which will be implemented in
October 2015, the clinical descriptions of
ME and CFS are identical, yet ME is
classified as a disorder of the neurologic
system (ICD G93.3), while CFS is considered
a synonym for chronic fatigue, which is
classified under ""signs, symptoms, and
abnormal clinical and laboratory findings, not
(ICDR53.82) [sic].  [Emphasis added.
Superscript reference given in brackets
Reference 1 is:
The World Health Organization''s
International Classification of Diseases,
Tenth Revision, can be accessed at
http://bit.ly/1DfleO8 (accessed January 13,
In the first place, the ICD-10 referred to
here is NOT the World Health Organization's
ICD-10, but the US version, based on the
WHO ICD-10, called ICD-10-CM.
CM stands for "Clinical Modification."
These limited modifications are made by
individual countries following WHO guidelines.
In the US, ICD-10-CM is produced by the
National Center for Health Statistics, a part
of the Centers for Disease Control.
The official version of the 2015 ICD-10-CM
can be downloaded from the CDC's website:
The official ICD-10-CM tabular
index does NOT include "clinical
descriptions" of diagnostic terms –
only the terms and their
What the IOM committee has done is to
stumble upon a commercial website,
ICD10Data.com, that adds clinical
descriptions, gathered using software from
various sources, to diagnostic terms.
These clinical descriptions are added by the
site owners - Alkaline Software - to help
market use of the website to medical
personnel to increase ad revenue:
The clinical descriptions are not
provided by the NCHS, the CDC, or
any government agency.
The link given in the IOM report does not
lead to the WHO "International
Classification of Diseases, Tenth
But to this unofficial, commercial version
of the US ICD-10-CM.
It is of no consequence that Alkaline
Software has added "identical" clinical
descriptions of ME and CFS to their
commercial version of the ICD-10-CM.
The published consensus case definitions
of ME and CFS are indeed very different.
Based on this blunder, the IOM
committee is recommending a new ICD
code be added for their new "systemic
exertion intolerance disease":
A new code should be assigned to
this disorder [sic] in the
International Classification of
Diseases, Tenth Edition (ICD-10)
[sic], that is not linked to ""chronic
fatigue"" or ""neurasthenia.""
[Recommendation 1, page 7]
Myalgic encephalomyelitis has been
classified as a neurological disease,
G93.3, by the actual WHO ICD since
On October 1, 2015, ICD-10-CM will
become official in the US and also will
include ME as G93.3 and specifically
exclude CFS from the neurological
Both the 2005 CCC Overview and 2011 ICC
specifically state the disease they define
should be coded as G93.3 in the diseases of
the nervous system section of the ICD.
Neither the CCC nor ICC, developed
by far more qualified panels than
the IOM committee, considers ME
as falling under any umbrella term
that includes CFS patients without
Instead of hiring the IOM to create a new
unneeded, unclassifiable diagnosis with a
silly-sounding name, all HHS needed to do
was advise doctors to use the existing CCC
or ME ICC to diagnose ME patients and code
the diagnosis as ICD-10-CM G93.3 for billing
and reporting purposes after October 1,
Any US doctor credulous enough to
consult the IOM report will receive no
guidance on how to code a differential
diagnosis of ME.
PEM, NOT Chronic Fatigue, is why patients
are bedridden, homebound, unemployed,
and unable to walk a block.
Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says - The Washington Post