Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & 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.

Proposed Changes in ICD Coding for CFS

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.

2011 IACFS/ME Conference Summaries

This conference, sponsored by the International Association for CFS/ME, brought together over 200 clinicians and researchers from 20 countries. The conference was held September 22-25 in Ottawa, Ontario, Canada.

Dr. Charles Lapp highlights what he found to be most important and interesting of the presentations. Read Dr. Lapp's summary.

Dr. Rosamund Vallings presents a brief summary of every paper presented in the plenary sessions, with a topic index. Read Dr. Vallings' summary.

Dr. Anthony Komaroff presented highlights of the conference from his perspective.  Read a summary.

View videos of the 13 presentations given on the Patient Day.

New Chronic Fatigue Initiative Funds Scientific Research

The Chronic Fatigue Initiative (CFI), a privately funded 501(c)3, has enlisted leading CFS/ME researchers to participate in a new collaboration. This is the first time the "venture funding" model, which uses private money to fund research on "overlooked" diseases and has been successful with cystic fibrosis and multiple myeloma, has been applied specifically to Chronic Fatigue Syndrome. According to Scott Carlson, Executive Director of the CFI, the Hutchins Family Foundation is providing "over $10 million" to fund projects through 2014, with the possibility of more depending on the findings.

The Chronic Fatigue Initiative has planned research projects in several areas, beginning with building a "bio-bank" containing biologic samples from a "well-characterized" cohort of 200 CFS patients and 200 healthy controls, collected by leading clinicians from around the country. Dr. Nancy Klimas is in charge of cohort recruitment. These samples can then be used for study by researchers around the country.

Creation of the bio-bank and a database to link information about the patients to the samples will be followed by research to discover and study possible pathogens involved in the illness.
An Epidemiology Project will utilize epidemiologic data from the Harvard School of Public Health to study possible environmental as well as biological risk factors for CFS.

A "Mechanism of Illness" program will work with a scientific advisory board of leading researchers and clinicians to formulate hypotheses and fund new grants for research to test these hypotheses.

Participating institutions include the Center for Infection and Immunity at Columbia University, Harvard School of Public Health, Stanford Medical School, Harvard Medical School, Duke University, NewYork-Presbyterian/Columbia University Medical Center, Brigham & Women's Hospital, Massachusetts General Hospital, University of Miami and University of Utah. Lead researchers include such familiar names as Drs. Nancy Klimas, Lucinda Bateman, Dan Peterson, Jose Montoya and Ian Lipkin.

Notice about names

The Massachusetts ME/CFS & 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) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.