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The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Changes proposed regarding the coding of Chronic Fatigue Syndrome (CFS) in the next edition of the International Classification of Diseases – Clinical Modification (ICD-CM-10) were discussed at the September 14, 2011, meeting of the ICD-9-CM Coordination and Maintenance Committee. ICD codes are used world-wide to classify diseases and gather statistics for health management and other purposes. How “Chronic Fatigue Syndrome” is classified in the U.S. edition could have an impact on patients.

There were two proposals presented, but both would result in CFS being coded in Chapter 6, “Diseases of the nervous system (G00-G99)”, where Myalgic Encephalomyelitis (ME) is currently classified, rather than in Chapter 18, “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99).”

The public comment period on these proposals has ended, and a decision is expected after the first of the year. At the same time as the ICD is being revised, the American Psychiatric Association is preparing version 5 of its Diagnostic and Statistical Manual of Mental Disorders (known as DSM-5), which is due to be released in May, 2013. DSM-5 includes a new category of psychiatric illness, Complex Somatic Symptom Disorder (CCSD). Under the definition of CCSD it is possible that many ME/CFS patients could be labeled as having a psychiatric illness, CSSD. The Massachusetts CFIDS/ME & FM Association has joined with other U.S. patient organizations to advocate against the potential misuse of this new psychiatric diagnostic category in the diagnosis of ME/CFS/CFIDS and Fibromyalgia. Read more about Advocacy.

What this means

If CFS is coded as a disease of the nervous system in ICD-10-CM, there will be a stronger case against the misuse of the CSSD psychiatric diagnosis in cases of Chronic Fatigue Syndrome, which is a medical, not a psychiatric illness.

What are ICD codes and how are they used?

The International Classification of Diseases has been the responsibility of the World Health Organization (WHO) since 1948. “The ICD is the international standard diagnostic classification for all general epidemiological, many health management purposes and clinical use. It is used to classify diseases and other health problems recorded on many types of health and vital records including death certificates and health records [… and] provides the basis for the compilation of national mortality and morbidity statistics by WHO Member States.” Individual nations can modify the ICD codes in order to better accommodate their needs, but only with permission from the WHO.

In the U.S., the ICD is used in epidemiology (tracking of illnesses), health management, and clinical practice, including billing. The system is used in many types of health records, including mortality and morbidity statistics. The coding system is used by medical insurance companies, as well as Medicare and Medicaid. The codes are also used by disability insurance companies in their determination of benefits.

What are DSM codes and how are they used?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association, and is the standard classification of mental disorders used by mental health professionals in the United States. Each of the diagnostic labels in the DSM is associated with a diagnostic code derived from the ICD.

“Making a DSM diagnosis” consists of selecting those disorders from the classification that best reflect the signs and symptoms that are exhibited by the individual being evaluated. Associated with each diagnostic label is a diagnostic code, which is typically used by institutions and agencies for data collection and billing purposes. DSM diagnostic labels are thus closely related to/dependent on ICD codes, and changes in ICD-10-CM to clearly identify Chronic Fatigue Syndrome as a medical illness will hopefully make it less likely that patients will receive an incorrect psychiatric diagnosis.

More resources

“HHS Announces ICD-10 Delay” (MedPage Today – April 9, 2012) The Department of Health and Human Services (HHS) now recommends the deadline for implementing the new ICD-10 diagnosis coding system be extended by one year, to October 1, 2014. Some healthcare providers claim they are not able to put necessary systems in place and fully test these within next 6 months.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.