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Is it time to get beyond ME/CFS case definitions?

Dr. Friedman started by drawing attention to the uncertainty and debate which now surrounds the three most popular case definitions for CFS, ME or ME/CFS. As chairperson for the session on "Case Definitions for Research and Practice" at the Ottawa conference, Dr. Friedman noticed some researchers/clinicians were unsure about the case definitions or not in agreement with each other, while others sought ways to get beyond these case definitions.

He thought some researchers were positively influenced by the approach being taken by Dr. Leonard Jason at DePaul University in Chicago, IL.  In order to arrive at the most suitable definition for the illness, Dr. Jason focused on identifying the most appropriate features in the illness and identifying the most appropriate case definition and criteria for CFS. (At the Ottawa conference, Dr. Jason's study described a statistical technique, data mining, which was used to help determine which questions and items would provide the most effective data).

The use of Electronic Medical Records (EMR's) affords a practical way to record and characterize patients' symptoms along with other relevant information. Patients' medical data could be compared to case definitions or other data along an infinite array of parameters. Dr. Friedman stated that the technology exists and it continues to become increasingly more accessible.

So, it would be possible to assess patients in this manner and determine if they met at least one the case definitions. Furthermore, he thought that if the patient would meet "one or any" of the illness criteria, that would suffice.

What Dr. Friedman described was the relationship of case definitions, EMR's and patient registries that could lead to a system with many possibilities for ME/CFS research.

Another approach that could help facilitate diagnosis of ME/CFS and selection of treatments, would be the switch from the "single definition/single cause" model to one that supports subsets.

Dr. Friedman made the analogy of ME/CFS to breast cancer, to the extent that breast cancer is described not as a disease but a category of disease in which there can be multiple types of breast cancer (or subsets). In this approach, treatments will often depend on the specific type of cancer that the individual patient has.

Dr. Friedman mentioned how this model for breast cancer was recently reviewed on the Doctor's Radio, a satellite radio station, which led him to see this as a viable and appropriate strategy for ME/CFS. There already exists considerable evidence to support multiple causes and subsets in ME/CFS, and the benefits that patients would gain from more individualized treatments is obvious.