Tuesday, February 10, 2015

IOM Unclassifiable Diagnosis

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9 February 2015
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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
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
       classification coding.

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
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.

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