Andie Pring
Andie Pring campaign leader

Coalition 4 ME/CFS Proposal to Reclassify Chronic Fatigue Syndrome (CFS) in the ICD-9-CM and ICD-10-CM


Coral Gables, FL, September 12, 2011 – The Coalition 4 ME/CFS on July 15, 2011, submitted a proposal to the National Center for Health Statistics (NCHS) for reclassification of chronic fatigue syndrome (CFS) as a neurological disease in the United States International Classification of Diseases-10-CM (ICD-10-CM) and International Classification of Diseases-9-CM (ICD-9-CM). The proposal was accepted for review at the upcoming meeting of the Coordination and Maintenance Committee at the Center for Medicare Services (CMS), in Baltimore, Maryland, on September 14, 2011.

The proposal request is supported by past and current recommendations from the CFS

Advisory Committee (CFSAC), an advisory committee, created under the Federal Advisory Committee (FACA) statue and regulations. The proposal request is to reclassify CFS as a neurological disease in the ICD-9-CM and ICD-10-CM in recognition of the current scientific understanding of CFS and its classification in the ICD-10 by the World Health Organization (WHO). “The goal of this proposal is to ensure alignment with ICD-10 under WHO and the clinical modifications embraced by other countries, and to ensure alignment with the best current case definition for CFS, which includes both viral and bacterial triggers,” stated Mike Munoz, a member of the Coalition 4 ME/CFS steering committee.

The WHO publishes the ICD, which is used by more than 100 countries to standardize how diseases are classified. In the ICD-10, which is the current global standard, myalgic encephalomyelitis (ME), post viral fatigue syndrome (PVFS), and CFS are all classified under Neurological Diseases. “This proposal is a stepwise change that will separate cases of ME/CFS from cases of unspecified chronic fatigue and depression, and in the process, signal to the medical community the seriousness of this disease,” said Lori Chapo-Kroger, another steering committee member.

It is estimated by the Centers for Disease Control and Prevention (CDC) that at least one million individuals in the U.S. and 17 million worldwide (National Institutes of Health) are stricken with this debilitating, disabling, and sometimes fatal disease. The annual economic cost in the U.S. for ME/CFS according to a recent study published in the Journal of Dynamic Medicine-Bio Med Central, by Jason et al., from DePaul University is estimated to be between 18 and 23 billion dollars. Marly Silverman, another member of the current Coalition 4 ME/CFS steering committee added: “The approval for review of this historical proposal by the NCHS, highlights the fact that current science is bringing government health agencies, researchers and patient advocacy groups together to collaborate, leading to results that will improve quality of life for patients afflicted with ME/CFS in the U.S.”

The Coalition 4 ME/CFS supports our scientific research community in the efforts of retiring the name chronic fatigue syndrome and the acronym CFS. It supports a worldwide collaborative and accepted case definition, with well-defined diagnostic criteria and guidelines for implementation of well-devised treatment standards. Although the coalition recognizes pragmatically the effort and time needed to drive this welcome change across all clinical, research, legal, disability, and insurance disciplines in the U.S., we believe our ICD-10-CM and ICD-9-CM proposal initiative contributes to a productive timely result.

We acknowledge and express gratitude to Mary Dimmock, who prepared the proposal request with solid expertise and diligence on behalf of the Coalition 4 ME/CFS. We thank the Coalition 4 ME/CFS steering committee for their unwavering commitment to this project. We acknowledge CFSAC members who have voted for the recommendations that this proposal supports. We appreciate the support of physicians and researchers who provided expert input to the proposal.

To read the proposal and get more information, visit the coalition website at Coalition4ME/

About NeuroEndocrineImmune Diseases (NEIDs)


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