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 preliminary comments on it on one specific issue from my friend and fellow advocate, Jerrold Spinhirne (with his permission, of course).  Thank you, Jerry!

2/11/15:  I've updated this post with more on this subject from Jerry below the original post.

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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 here.]

Reference 1 is:

The World Health Organization’’s International Classification of Diseases, Tenth Revision, can be accessed at http://www.icd10data.com/ICD10CM/Codes (accessed January 13, 2015).

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. http://www.cdc.gov/nchs/icd/icd10cm.htm#icd2015

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. http://www.icd9data.com/AboutUs/ 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 Revision," 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 1969. 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 ME.

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, 2015. Any US doctor credulous enough to consult the IOM report will receive no guidance on how to code a differential diagnosis of ME.

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Jerrold Spinhirne, Facebook status update, posted 2/11/15:

The failure of the IOM ME/CFS committee to acknowledge the long-standing ICD code for myalgic encephalomyelitis as G93.3 in the diseases of the nervous system section of the WHO ICD means whatever disease the committee has defined, it is not ME. The committee, composed mostly of US non-experts from outside the field, wishes to create a new disease with a new ICD code, de novo, based on a literature review. This is absurd. The IOM committee lacks the standing and qualifications even to suggest such an outrageous undertaking.

Far more qualified independent international panels, composed entirely of experts, have clearly stated that the disease they are defining is ICD G93.3 myalgic encephalomyelitis. The 2003 CCC does not address the classification issue. However, the later CCC Overview summary does – as do the ME-ICC and IC Primer.

2005 CCC Overview, Page 1 under Classification:
ME/CFS is an acquired, organic, pathological, multi-system illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD).

2011 ME-ICC:
In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

2012 IC Primer, Page 1:
Classification: Myalgic encephalomyelitis has been classified as a neurological disease by the WHO since 1969. WHO stipulates that the same condition cannot be classified to more than one rubric because, by definition, individual categories and subcategories must remain mutually exclusive. Thus, it is essential that patients meeting the ICC for ME are removed from overly inclusive groups. [In adjacent box.] Myalgic encephalomyelitis: neurological disease WHO ICD G93.3.

Failure of the IOM committee to acknowledge the established neurological classification of the disease ME and the committee's hubristic attempt to create a new disease with a new name and ICD code is absolutely unacceptable.