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Founder's Corner: "Chronic Shakiness Syndrome"

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By Rich Carson • • September 6, 2006

ProHealth has received 438 letters to date regarding Campaign for a Fair Name - the three-week-old patient movement to change the name "Chronic Fatigue Syndrome" to one that does not trivialize the seriousness of the disease by calling it a symptom common to many diseases and life conditions.

The vast majority of writers offered support by volunteering their time and energy for the campaign. Less than 2 percent of the letters were from readers who felt that the name should remain the same, their rationale being that CFS is already a recognized name. The Centers for Disease Control (CDC) maintains that less than 20 percent of CFS victims have actually received a CFS diagnosis. This means it is not recognized enough. The theme of most of the letters is that the name is hurtful and stigmatizing to patients and their loved ones; a real, serious disease deserves a real, serious name. Not one with "fatigue" as the central part.

Some people wrote that the name should be changed only after the cause of the disease is identified. Although this is an ideal scenario, there are probably several "subgroups" of CFS, and most likely there are several causes as well. Waiting for the discovery of a cause could take a long time, and even then, it may be the cause of only one of the disease's subgroups. I used to be in the "wait for the cause" camp, but almost 20 years have passed and the name "Chronic Fatigue Syndrome" continues to harm sufferers, confuse doctors, and impede research funding.

My favorite letter was from someone who said that calling this disease Chronic Fatigue Syndrome is like calling Parkinson's disease "Chronic Shakiness Syndrome" or calling Alzheimer's disease, "Chronic Forgetfulness Syndrome." My hat is off to that person. Bravo!

The name suggestions have been creative and impressive, and ProHealth has established a place on our bulletin board where you can introduce your name choice, discuss others that have been suggested, or just read the comments of other visitors. One name seems to be getting most of the attention, and looks like it could be an early winner. Want to know which one?

About the bulletin board: You will need to register, but there is no charge and no spam, and you will always have complete anonymity. While you are there, search the archives for specific information pertaining to you and your needs. Our bulletin board is a fabulous source of expert information from people who know and who care - just like you.

What would you like "Chronic FATIGUE Syndrome" to be called?

Yours in health and unity,

Rich Carson
ProHealth Founder and CFS Patient

PS. To the many wonderful people who wrote to volunteer your efforts: Thanks a million for your support! I will be in touch with you as we begin to launch the campaign. Stay tuned.

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