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Discussion of International Classification of Diseases—patients could be orphaned by codes assigned to their illness

Discussion of the International Classification of Diseases—Clinical Modification (ICD-CM) concerns was another very important agenda topic. Initially, someone was supposed to come from the National Center for Health Statistics (NCHS) and speak about the changes with upgrade to ICD-10-CM codes (which are used for insurance and other purposes). However, in the absence of this presenter, the data provided by Dr. Wanda Jones and Dr. Leonard Jason was still quite valuable.

Dr. Jones pointed out there has been a process in place by which codes are reviewed as well as a process providing opportunities for public comment during public meetings held by NCHS. To submit comments or recommendations, patients or organizations would have to register (much like for CFSAC meeting participation). She said that she was informed that there has been no reported presence by the ME/CFS community at those meetings.

Dr. Leonard Jason helped to explain the importance and the impact of codes used to categorize an illness, especially those like ME and CFS. Even though all through this meeting and elsewhere, the term ME/CFS is being used synonymously, CFS is not the same as ME, especially when it comes to ICD codes. CFS and ME are regarded as two distinct entities in their classification and in how they are coded. There are many other differences and repercussions, but here is what patients and physicians need to understand about CFS compared to ME, in this particular function:

• ICD-9-CM (referring to the 9th edition of the World Health Organization (WHO) international classification of diseases and the clinical modification currently used in the U.S.) classifies CFS under "Symptoms, Signs and Ill-Defined Conditions", with the code 780.71 ("General Symptoms"). In a subsequent revision, ME was moved to a completely different classification (a type of encephalomyelitis) and given the code 323.9.

• Use of ICD-9-CM is coming to an end. ICD-10 was released by the WHO in 1992 and everyone around the world has been using the 10th edition of classification and codes for illnesses, except the U.S.

• ICD-10-CM takes effect in the U.S. on Oct. 1, 2011, with a partial freeze on these codes while electronic records and systems are updated. Revisions will still be possible later on, but it is always more difficult to do so after adoption. This changeover was not sudden nor unexpected, especially when the rest of the world is now preparing for ICD-11 updated classifications. This will further complicate how these illnesses are grouped and coded in the U.S.

• Post-viral Fatigue Syndrome (PVFS) and ME—under ICD-10-CM, both will be classified with diseases of the nervous system, under the G93 group ("Other disorders of the brain"), and more specifically, coded as G93.3. Canada has already been using ICD-10-CA (the Canadian modification) and has placed all three terms (CFS, PVFS and ME) under G93.3.

• CFS—under ICD-10-CM, CFS will be classified in a group described as "Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)". CFS will fall into the "R codes", under R53 (referring to malaise and fatigue) and more specifically, the new code for CFS will be R53.82.