Saturday, February 14, 2015

Chronic fatigue syndrome gets more respect (and a new name) | Scope

"What I want to see is someone in Congress get pretty riled up by this report — have them see how many people are affected, how these people are really ill, how they've been mistreated," Kreutzer said.

Just My Honest Opinion: The New Name - Three out of Four Ain't Awful

maybe doctors will stop suggesting SEID patients take up a rigorous exercise routine by understanding the name. I can see a patient asking, "Doc, when I feel the fatigue, should I push through?" And he says, "No, your body has a system-wide intolerance to exertion. So, you should be careful to not push. And you need to make sure your family understands this. There are limits of what and for how long you can do things. You will make your symptoms worse if you exert yourself." So, even with the word "exertion," I can see some benefits. How many of us wish our doctor told us early on to not push through the fatigue?

IOM Report Hits The Mark, By Emphasizing the Hallmark Symptom of This Disease

 IOM Report Hits The Mark, By Emphasizing the Hallmark Symptom of This Disease

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.

What's in a name?

What's in a name?
Systemic Exertion Intolerance Disease
SEID.  "How do you pronounce SEID?  Is it seed, side, said?"  Well, according to the committee, it's pronounced S.E.I.D.; four letters, not one syllable.
One faction likes it: it gets the hallmark symptom -- post-exertion relapse -- right out there in people's faces.  Others dislike it, with valid concerns that "exercise intolerance" will simply be another word that equates to Lazy or Deconditioned in many people's minds; we've just traded fatigue for another fatigue-like word.  To them I say, it's EXERTION intolerance, not exercise intolerance, and that refers to any type of exertion, mental or physical. 
Doing math is not something that's going to be impaired by laziness or improved by physical exercise.  Your brain doesn't get deconditioned if you don't read for a while -- you can pick up a book after years of not reading and still have reading comprehension. 
When I first got sick, my then-boyfriend, with no medical training, simplistically described it as Brain Fever based on the extremely high fever and delirium that he witnessed.  As it turns out, he was more correct than the many doctors who tried to wipe it away with psychobabble and anti-depressants -- it was a fever and it did affect my brain.  It takes major trauma to cause the cognitive problems we have; Sheila Bastien notes we have more problems than patients with Traumatic Brain Injury.  Somehow THAT symptom always gets lost in the accusations of being lazy or physically out of shape.  No one except activists and a few specialists seem to know that brain scans turn up unusual spots similar to the lesions found in MS, proving that we are not just lazy.  Somehow, the media and medical community have neglected to mention that, because it doesn't fit into the preferred narrative that we're just tired/lazy/crazy/fakers.
The name is not ideal, but at least our doctors fought to get us "Disease" rather than "Syndrome".  I've had too many arguments with people who are convinced that a syndrome is less severe than a disease.  Ummm, hello?, AIDS is a syndrome, and it's fatal.  Somehow that argument always goes  over their heads, and a few days later we're right back to arguing that I can't possibly be as sick as I say, because I only have a syndrome and not a disease.  Well, now I have a disease.  So there.
Dr. Dowsett noted that when they changed the name from Myalgic Encephalomyelitis to CFS, all connection to decades of ME research disappeared, as well as the insinuation that this condition has some relation to poliomyelitis.  I'm not sure whether it's a good thing or a bad thing if this name change has the same result of eliminating all connection to prior CFS research.  I mean, some of it has been good, like the studies that brought us to the notion of Systemic Exertion Intolerance.  Starting from a blank slate with a new name will mean we don't have all the studies proving that our bodies react in unusual ways to exercise.  There will always be those who -- just as they did when someone with CFS tried to invoke ME research -- will argue that that research doesn't apply because "you have SEID, not CFS; it's not the same disease."
HELPFUL HINT: I put the links to the IOM report and the IOM PowerPoint slides into my phone, so they are handy when I see a new doctor who needs some education in what we're dealing with.

Institute of Medicine Issues New Diagnostic Criteria and Disease Name

Peterson's IOM report cheat sheet for those who don't want to read the whole 300-page report

Name change committee report | Comments by Dr Charles Shepherd


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

Diagnosing Chronic Fatigue Syndrome the IOM Way: the IOM Report #3

If you want to blame the fact that the Committee did not recommend the Canadian or International Consensus Criteria you can blame it on Lenny Jason.  His work indicated that the diagnostic criteria  for ME/CFS could be shorter – much shorter – without sacrificing accuracy and without potentially running into the problem of emphasizing psychological issues. In medicine, if not in other places, shorter is better.

Read more: Diagnosing Chronic Fatigue Syndrome the IOM Way: the IOM Report #3

Friday, February 13, 2015

Jen Brea on NPR Monday morning 10am ET/7am PT

Pseudo-diagnosis will bury ME even further

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Help ME Circle <<<<
13 February 2015
Editorship :

By Jerrold Spinhirne
The US Department of Health and Human
Services (HHS) has paid the non-profit
Institute of Medicine  (IOM)                      
( $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
economic power.

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
characterized by:

       (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
       after onset.]

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:

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
the population.

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
even further.

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.

Brian Williams isn't NBC's only ethical problem; check medical news

Their issue is "conflict of interest"; our issue is touting exercise as suitable for exertion intolerance.  What part of exertion intolerance does she not get?

Thursday, February 12, 2015

Chronic Fatigue Finally Gets The Name It Deserves


This is what we're up against | Phoenix Rising ME / CFS Forums

The comment section of Miriam Tucker's new Medscape article is, once again, full of physicians making extremely derogatory remarks about patients with ME/CFS/SEID. Curiously, the article is under the Psychiatry and Mental Health section, whereas one of her recent articles was under Rheumatology.

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. 
* * *
Even after I got a blood test that was 10x normal, I was still dealing with people who were sure I'd somehow faked that blood test.
The only thing that will change the minds of some people is to come down with it themselves.

Wednesday, February 11, 2015

Goodbye chronic fatigue syndrome, hello SEID | Science/AAAS | News

After reviewing more than 9000 scientific studies, hearing testimony from experts, and soliciting input from the public, the committee concluded that "the name 'chronic fatigue syndrome' has done a disservice to many patients," calling it  "stigmatizing and trivializing." 
Systemic exertion intolerance disease does not exactly roll off the tongue. IOM committee member Ronald Davis, a biochemist who heads the genome center at Stanford University in Palo Alto, California, says the group considered about 100 options. "Boy, did we  struggle with that," he said. "It's hard to come up with a good name, and I don't think this is a perfect name."
"I hope it will get rid of those who may not believe it," Davis said. "They'll have to keep it to themselves. It's incompetence and it's malpractice."
* * *
Got that, folks?  There are more than 9000 studies, worldwide, that show physical abnormalities.  It's not just a figment of our imagination.  It's real, it's very real.
I hope that this will allow us to report every doctor who has ever disparaged us for "incompetence and malpractice" and have them forced into an educational program that teaches them how to be sensitive to patients' concerns. 
And if you have any doubts how serious it is, this moment is bittersweet, coming on the heels of the death of a patient/activist in her early 30s just a few days ago.  Yes, it kills.

Tuesday, February 10, 2015

Rebranding chronic fatigue syndrome - CBS News

"This is not a figment of their [patients'] imagination. This is an all-too-common, complex disease that needs to be diagnosed."

Wormwood: The IOM Report proposes new name

This has happened with another doctor before. This one said
,"You need to push yourself. You are making 
yourself a cripple!"

No, I'm really, really not. And doctors should not be allowed to say that anymore.

IOM's Powerpoint Slides for today's hearing


The committee reviewed literature on a number of symptoms in ME/CFS patients:
•Post-exertional malaise
•Orthostatic intolerance and autonomic dysfunction
•Neurocognitive manifestations
•Sleep-related symptoms
•Symptom Constructs and Clusters
•Immune impairment
•Neuroendocrine manifestations
What will these new criteria mean for clinicians?
•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

Preface and Summary of IOM report

The committee "developed evidence-informed diagnostic criteria for this complex, multisystem, frequently
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.
These are doctors who have taken care of us.  They have seen the disease, and know the effects.  They recognize the severity, in ways that other committees have not.
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 more fully captures the full scope of this disorder."
Seeking and receiving a diagnosis can be a frustrating process for
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.
This has always been a big problem.  Doctors who don't know what they're dealing with will tell you to exercise your way back to health, which can land you in bed for years.  Having a diagnosis may be reassuring, "it has a name", but if the doctor has no clue what to do for you, having a diagnosis is ONLY of emotional benefit.  You're still sick.  
They "read the full text of these articles,
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
Chapter 7 presents the committee's recommendations, including new diagnostic criteria and a
new name for ME/CFS, and operationalizes the new criteria.
The primary message of this report is that ME/CFS is a serious, chronic,
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."
It is never appropriate to dismiss ANY patient's symptoms.  There's a reason for them, and it's the doctor's responsibility to find that reason.  Do more tests.  Do even more tests.  Consult older and wiser doctors.  But do NOT tell the patient she's imagining things or exaggerating unless you have actual proof that this is true.
Recommendation 1: Physicians should diagnose myalgic encephalomyelitis/
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."
Getting away from those old, psychobabble notions will be a great help to patients.
the committee was struck by the relative paucity of
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
is essential.
This is what patients have been begging for since the beginning -- research.  You can't fix what you don't understand.  You'll never find what you're not looking for.
The criteria proposed here will not improve the diagnosis and care of patients unless health care providers use them.
And there's the problem.  Experts have known for a quarter-century that brain scans of various sorts were showing a problem; that information was not being used by the front-line doctors.  If a well-read patient suggests it to a doctor, the idea is often simply dismissed by the doctor.  And if the patient isn't well enough to do her own research or assertive enough to advocate for herself, the odds of getting that diagnostic test fall to zero. 
Personally, I knew to ask for cardiac testing, and my PCP was willing to order it, but the cardiologist paid no attention to my request for the specific test that Cheney recommended, and instead insisted on giving me a treadmill test because, after all, he's the doctor and he knows better than anyone else.  Except he didn't know better, and hadn't even read the multi-page form his office insisted had to be returned 2 weeks in advance of the appointment, which noted that I have had exercise-induced asthma since I was a child; that alone would have required giving me the stress test by injection while sitting in a chair (as I had requested) rather than on a treadmill.  His lack of information could have killed me.

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.  
The committee was convinced of the
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.
My current insurance does not cover my favorite doctor, and has therefore assigned me a new PCP with whom they have been pushing me to schedule an appointment.  Armed with this new name, I will see whether I get better treatment.  I'll also take along the link to download this report, and see whether he's amenable to reading at least essential portions of it.

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."
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.

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
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.

Charge to the Committee, 16
Context for This Study, 17
The Committee's Approach, 19
Overview of the Report, 24
References, 25
History of ME/CFS, 27
Terminology, 29
Burden of ME/CFS, 31
References, 33
Case Definitions and Diagnostic Criteria, 38
Terminology, 57
Symptom Constructs and Clusters, 60
References, 66
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
Pain, 141
Immune Impairment, 147
Neuroendocrine Manifestations, 152
Infection, 157
References, 162
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
Making the Diagnosis, 213
Disseminating the Diagnostic Criteria, 225
Updating the Diagnostic Criteria, 226
Naming the Disorder, 227
Closing Thoughts, 228
References, 228
Objective, 231
Context, 231
Strategic Choices, 235
Dissemination Activities, 239
Evaluation, 246
References, 246
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.

IOM: Report Card | Occupy CFS

The blogosphere is burning up today with the IOM report

THE NICEGUIDELINES BLOG: IOM: psychiatrists' beliefs are wrong

In particular, the panel found sufficient evidence linking the illness to immune dysfunction, especially diminished natural killer cell function, and infection, particularly Epstein-Barr virus. 


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."

New name, new approach?

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,
Nashville, Tennessee
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 (

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.

IOM Unclassifiable Diagnosis

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9 February 2015
Editorship :

Twenty Years and Counting
Tuesday, February 10, 2015

Guest post

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
and misrepresentations
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
elsewhere classified""

(ICDR53.82) [sic]. [1] [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 (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
       classification coding.

What the IOM committee has done is to
stumble upon a commercial website,, 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
disease classification.

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.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining

Download the PDF free or pre-order a $45 hardcopy.  You know which I'm doing.  You know what I'll be reading this afternoon.

Chronic fatigue syndrome is a physical disorder, not a psychological illness

Gosh, don't all of you who verbally and emotionally abused patients feel really dumb now?
"We just needed to put to rest, once and for all, the idea that this is just psychosomatic or that people were making this up, or that they were just lazy," said Ellen Wright Clayton, a professor of pediatrics and law at Vanderbilt University, who chaired the committee of the Institute of Medicine, the health arm of the National Academy of Sciences.
Less than a third of medical schools include the condition in their curricula and only 40 percent of medical textbooks contain information on it, the experts said.