Chronic Fatigue Syndrome Name Change Imminent

It is late at night and I am jet lagged, having just returned from Florida where the CFS Name Change Advisory Board met to discuss a possible name change for Chronic Fatigue Syndrome. The Fort Lauderdale meeting took place Friday January 12, and coincided with the IACFS conference, in a city that was warm, tropical, and very, very windy. I would like to think that those were the winds of change.

Board members included Drs. Lucinda Bateman, David Bell, Paul Cheney, Leonard Jason, Nancy Klimas, Anthony Komaroff, Charles Lapp, and Daniel Peterson (via telephone). Putting this team of the nation's leading CFS researchers together has been a lot of fun (and work), and happily, everything went as planned. The scientists arrived, and proceeded together as a congenial, social group - partially the result of a prearranged limousine ride that delivered all of us to a lovely restaurant with great food, good service, and importantly, a private meeting room. This was indeed a dream team of brilliant and respected minds, and I was honored to be in their presence.

Board members discussed and debated the merits of changing the name 'Chronic Fatigue Syndrome' - broadly considered by patients and the majority of CFS researchers and clinicians as hurtful. They carefully weighed the negative consequences of a change versus possible benefits. There was little conversation regarding the pejorative nature of the current name, and the group quickly addressed the appropriateness of an alternative name.

In particular, the board considered two issues. One was the vast amount of research that has already been published using the name 'Chronic Fatigue Syndrome.' The other was the question of timing, especially in light of the extensive effort the CDC is presently exerting to promote recognition and education of the disease via its $4 million advertising campaign.

The board members got down to making some tough calls - a strong theme being science versus social injustice - and reached a consensus decision that the name should be changed. The particulars of their decision and rationale will be issued in a written statement and will be released on ImmuneSupport.com in the future.

Interestingly, the board of directors of the IACFS announced a decision to change the name of their organization to the IACFS-ME - based on a poll of their general membership.

Your patient advocate,

Rich Carson
ProHealth Founder and CFS Patient

PS. A special thanks to Marly Silverman of PANDORA, who masterfully organized the IACFS professional and patient conferences. Both conferences set attendance records with participation, enthusiasm, and hope at an all-time high. ProHealth was proud to be a sponsor of both.