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Founder’s Corner: Name Change Advisory Board to Meet in Florida

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A committee consisting of eight leading CFS researchers and clinicians has agreed to meet in Florida on January 12. They will develop a strategic consensus recommendation on a new name for ‘chronic fatigue syndrome’ – for subsequent review by patients and patient organizations.

According to published research, CFS patients and researchers alike feel that the present name trivializes the serious nature of the disease by labeling it “fatigue” – a symptom that is shared by almost everyone at some point in their life. The CDC maintains that up to 25 percent of people in the U.S. seeking help from their doctors complain of fatigue, and fatigue is central to many illnesses.

The members of this Name Change Advisory Board number among the most published, quoted, and highly regarded CFS experts in the nation – and collectively represent more than 150 years of direct CFS clinical and research experience.

Board members include Drs. David Bell, former professor of medicine at Harvard Medical School, Anthony Komaroff, senior physician at Brigham and Women’s Hospital and editor in chief of Harvard Health Publications, and Nancy Klimas, president of the International Association for CFS and faculty member of the University of Miami School of Medicine. Other members include the eminent Drs. Daniel Peterson, Lucinda Bateman, Leonard Jason, Charles Lapp, and Paul Cheney.

All are medical doctors with the exception of Dr. Leonard Jason, PhD, a noted CFS epidemiologist and professor at De Paul University.
“It’s just fabulous that a group of doctors of this importance, of this magnitude, can come together to help patients find a better name” said Chris Pitko, a CFS patient in Southern California, and one of the hundreds who have written to express their view that the name chronic FATIGUE syndrome is stigmatizing and embarrassing.

Leading CFS patient organizations have historically denounced the name as medically vague and inappropriate – and published research studies indicate that the name leads doctors to believe CFS is not a serious illness. Maybe that is why, according to the CDC, fewer than 20 percent of patients have received an actual CFS diagnosis.

Is CFS serious? Try this on for size: According to information released at the CDC’s press conference in late 2006, CFS patients suffer as much or more than cancer patients on chemotherapy, or patients with multiple sclerosis, ‘end stage’ AIDS, end stage kidney disease, and end stage emphysema. By the way, ‘end stage’ is the last, or terminal, stage of life with a given disease. That is pretty serious, I would say.

The effort to change the name – the Campaign for a Fair Name – will be a collaborative effort involving both patient organizations and the medical community. For more perspective on the long struggle for a fair name, read the following article titled “A Disease in Search of a Name.”

Wishing you a happy, healthy New Year,

Rich Carson
ProHealth Founder and CFS Patient

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