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 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.


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.

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.


  1. Very interesting! Great points, Jerrold! I did notice them referring to ICD 10-CM as "ICD 10" and just thought, 'oh no, more sloppiness, going to create more confusion. I saw they said the ICD definition was the same and just thought 'ICD doesn't define illnesses' and was just confused. It didn't occur to me that the panel could be so sloppy that they had no idea about this and got their 'information' from that commercial site! Unbelievable. Just more nonsense. It never stops.

    Instead of having these IoM reports only reviewed by a select few reviewers who aren't up to the job, why don't they just release a draft. Informed patients make up the vast majority of experts on this disease and would have been all over it, as evidenced by your excellent blogpost here. But, no, these organizations are too fancy to hand over the draft for comments from the unwashed masses. Too fancy or doing it on purpose so their nonsense isn't pointed out.

    1. From Jerrold:

      Thanks, Justin. It's unbelievable that after waiting 46 years for ME G93.3 to be included in the US version of the ICD, the IOM committee, composed mostly of medical dilettantes and HHS camp followers, wants to toss the neurological disease coded G93.3 out the window. Instead, the committee wants to start from scratch with a new name and new ICD code, which very well may not be in the neurological diseases section of the US ICD. This is just plain stupid. No doubt the HHS overseers of this disastrous report will be pleased.

  2. Thanks to Jerrold Spinhirne for the excellent post and to Liz Willow for sharing it here! This nicely illuminates the motivation for the renaming and redefining effort. I don't think this was sloppy or stupid on the part of the committee, however. I think it was part of their deliberate effort to continue the cover-up of ME after the ICD-10-CM billing code for ME goes into effect. It will be critically important to point out errors such as Jerrold has uncovered here to our healthcare providers and to not let ME get buried under SEID.


    1. I agree, Jan. This is politically motivated. I'm sure the IOM panel knew that separating ME from CFS would not please HHS. No one bites the hand that feeds them and 80% of the IOM's business comes from the Federal government.

  3. Great post! I just finished writing one of my own on the subject of the IOM's ridiculous renaming and cited this post as a source of more info for my readers. Thank you very much!