Confirmed victory

On July 15, the Coalition 4 ME/CFS submitted a proposal to the National Center for Health Statistics (NCHS), ICD-9-CM Coordination and Maintenance Committee (C&M) to restore CFS to Chapter 6, “Diseases of the Nervous System,” code G93.3 in the ICD-10 Clinical Modification (ICD-10-CM). The Coalition's proposal was based on the scientific recommendations made by the federally-appointed Chronic Fatigue Syndrome Advisory Committee (CFSAC), a committee of national experts on ME/CFS, on September 2004, August 2005 and May 2011. 

The proposal was "accepted for review" by NCHS and only under ICD-10-CM since ICD-9-CM is now "locked down".

On September 14, the Coalition 4 ME/CFS made an oral presentation to the committee and responded to concerns expressed by audience members.

The coalition has written a letter to clinicians, researchers and other medical professionals outlining the two options 

The NCHS is asking for public input during the “open comment” period between now and November 18. The NCHS director will make a decision sometime in December. By signing this petition you will be sending a letter in favor of the Coalition option. For the complete information on the Coalition's proposal  please visit


Letter to
Donna Pickett RHIA, MPH Medical Classification Administrator National Center for Health Statistics - CDC
In support of the July 14th Coalition 4 ME/CFS proposal, I respectfully request that the National Center for Health Statistics, housed at the Centers for Disease Control and Prevention (CDC), revise the U.S. Clinical Modification of the International Classification of Diseases (ICD-10-CM) on chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).

In the ICD-10-CM, I respectfully request that CFS be moved from “Chronic Fatigue, Unspecified” at code R53.82 (under “Symptoms and Signs”) to G93.3 (under “Diseases of the Nervous System”), its current position in ICD-10. This is “Option 1” as presented by the Coalition 4 ME/CFS.

I reject the NCHS Option 2 where CFS is put in a different diagnostic code from ME. For two decades, CFS data in the U.S. has included patients with virus triggers. To separate CFS patients based on viral triggers or no viral triggers will corrupt data collection and is contrary to the clinical modifications used in other countries and the ICD-10 published by the World Health Organization. Much of CFS research shows the disease often has a viral trigger.

In addition to requesting that CFS be moved, I am requesting implementation of the coalition’s proposal as soon as the process allows, before rollout of ICD-10-CM in 2013. This will help in more quickly ending the confusion clinicians have in diagnosing this disease and will better distinguish it from other illnesses that cause fatigue.

The CDC estimates that at least one million people in the U.S. and 17 million worldwide, according to the National Institutes of Health, are stricken with this debilitating, disabling, and sometimes fatal disease; and we need to act now to end the confusion on the nature of this illness.

Thank you for your attention in this matter,

Sincerely yours,

Coalition 4 ME/CFS started this petition with a single signature, and won with 247 supporters. Start a petition to change something you care about.