Five Congressmen, a Senator, Joan Baez, and the Governor of Nevada - What Do The

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FOUNDER'S CORNER

Five Congressmen, a Senator, Joan Baez, and the Governor of Nevada -

What Do They Have In Common?

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What do five congressmen, a senator, folk singing legend Joan Baez,

a mayor, the governor of Nevada, and more than 300 high society

luminaries have in common? They all attended a magnificent gala

fundraising event, awards ceremony, and strategy planning session in

Reno on September 15, held to support Chronic Fatigue Syndrome

research. The event was sponsored by the Nevada CFS Foundation and

the HHV-6 Foundation, and it was beautifully organized and wildly

successful. This produced big news for patients, and I look forward

to sharing details and photos in ProHealth's next CFS newsletter.

Stay tuned.

I was honored to co-chair a Chronic FATIGUE Syndrome renaming

meeting at the event with the extraordinary CFS researcher and

humanitarian Klimas, MD, President of the International

Association for Chronic Fatigue Syndrome (IACFS). Some of the

attendees included Dr. Dan , whose reputation as a CFS

specialist, researcher, and patient advocate is legendary, as well

as Drs. Lapp, Kenny De Meirleir, Konnie Knox, Snell,

Mark Van Ness, and Judy Mikovits.

Dr. Katrina Berne, PhD, represented the CFIDS Association of

America; Judy Fero represented the Wisconsin CFS Association;

Loomis (Harvard MBA) and Hischier (Wharton MBA)

represented the HHV-6 Foundation; and CFS power broker and

philanthropist Annette Whittemore and her lovely daughter, ,

represented the Nevada CFS Foundation. The Department of Human

Health and Services' CFS Coordinating Committee was represented by

Staci s, MA. I was in the company of some very important,

influential people.

The discussion was lively, and the bottom line was that everyone

seemed to recognize the importance of changing the name " Chronic

Fatigue Syndrome " to one that does not stigmatize and demean

patients with the trivializing word, " fatigue. "

Dr. Klimas provided terrific background information on previous

attempts to change the name, and provided the beginnings of a

roadmap for a successful renaming campaign. She argued effectively

that issues could arise for patients seeking Social Security

Administration disability benefits if the new name does not include

the words " Chronic Fatigue Syndrome, " at least in the interim. The

other participants seemed to agree.

The general consensus was that a stepwise name transition would be

less likely to harm patients seeking CFS disability support.

Discussion then focused on two names in particular, which I will

discuss in my next CFS Founder's Corner. In the meantime, please

visit the Bulletin Board to see readers' comments and name

suggestions. I would say that the name change is inevitable.

Wishing you good health and healing,

Rich Carson

ProHealth Founder and CFS Patient